Welcome to Merle's World

BEEP, BEEP, BEEP

2012-01-30T23:54:00.004-05:00

That’s a sound I heard just before daylight the other morning. Even though I was in a deep sleep, that is a sound that will wake me. I have pulmonary arterial hypertension, a life threatening disease that affects both the lungs and the right side of your heart; and I am on an IV medication… a line goes into my chest and directly into my heart where a life-maintaining medication flows through that line and is run by a pump; I am attached to it 24/7/365. When it malfunctions it goes BEEP, BEEP, BEEP.

Upon occasion I have rolled over in bed and kinked that line, shortly thereafter I will hear a BEEP, BEEP, BEEP. I move, check the line and the beeping stops. This time that sound continued. I was thinking ‘did I forget to do my medicine last night’ – there again the pump will set off that alarm to let me know my medication is low. Now I had to get up, put on the lights and check my pump. The reservoir setting indicated that it was in a normal range. I also checked my calendar. HMMM

I checked my dining room table (that is where I mix my medicine)… no sterile drape with empty bottles of medicine, syringes and all the other goodies that go along with mixing and I mix every other day. Nothing, nada. HMMM

BEEP, BEEP, BEEP once again. Hmmm, this time it sounded further away.

I had checked the line, no kinks. I had checked and no leftovers on the dining room table (I mix late and put all those used/empty items in the garbage the next morning). The pump was at a setting it should be; and it’s still beeping. ??? O.K., so apparently it isn’t the pump. I followed the sound and it led me to my bedroom. It wasn’t the alarm clock and then again beep, beep, beep. I was getting closer. Then it dawned on me. I take my cell phone to bed with me (I use it as an alarm clock for my other meds)…. THAT battery was running low so BEEP, BEEP, BEEP!!!!

Just another adventure with having a life threatening disease; knowing enough that I checked everything out and how we learn to cope and how life does go on.

Remember to smile – it’s contagious.

Merle

Agitation

2011-01-18T20:51:00.004-05:00

Agitation (noun)
1. Anxiety – nervous anxiety
2. Public campaigning – actions intended to arouse public feeling, interest, or support for or against something.
3. Shaking – vigorous or violent shaking, stirring, or other disturbances of something, especially a liquid

Sunday evening my washing machine decided to give me some grief. A load of wash was put in and I checked later on to put it in the dryer. The clothes were sopping wet. Oh no buckwheat. I reset the dial for final spin and went in the other room. I came back and oh, no buckwheat the clothes were still sopping wet. :o(

Now I’m a fairly sensible person. I tend to have a mechanical mind – pretty good common sense (at times) so I thought, hmm let’s try another cycle. I reset the dial and I heard some water drain, then a click and then the final spin light went on and then went out as quickly, then the “it’s over” light went out. I emptied out some of the clothes thinking maybe the load was off balance.

I ran a full cycle from start to finish. The start worked ok but it would not “agitate”. Hmm, again. I was getting agitated myself and decided to let it go for the evening, Tom would be over the next day and maybe he could figure it out. When you have pulmonary hypertension being stressed out is not a good thing, it can make your heart race and then you get short of breath and other things. I took a deep breath and let it out slowly, I took several deep breaths and let them out slowly. Something else that is helpful when you have pulmonary hypertension. It helps calm one down.

The next day when Tom arrived – the weather was accommodating so he was able to drive in to my place. I explained the situation and we were both hoping it was the “belt”. He took the back off the machine and the belt was in place and whole. He looked at this and tried that, had me set the dial to have it spin while he watched, nothing, zip, zilch. Darn. Sounds like it might be the motor or one of those techie things; with my luck it will be a circuit breaker. I do wish it had a reset switch. Seems nothing is simple lately.

I called Sears as it is a Kenmore, a stackable washer and dryer. I was told it would cost $100 for a repairman to come out just to look, then parts and labor; I said thanks but no thanks. Yellow pages here I come. I found two local repairmen and I called the first who set up an appointment for today. He came; he saw and could not conquer. Darn. He didn’t charge me for the call saying he doesn’t do front loading machines. I then proceeded to call the second repairman. He also asked similar questions, model, problem, etc. I mentioned it being a front loader and the water would fill, it would drain but it wouldn’t spin or…. and I was at a loss for the word I was looking for and the voice on the other end said agitate – I said yes and that I was now getting very agitated with it not working… he chuckled. The earliest he can come out is next Monday – next Monday, what am I to do. Double darn.

Remember to smile -- it's contagious

How the heart is supposed to work

2010-12-19T18:28:00.003-05:00

1. Blood that has delivered oxygen to the rest of the body flows into the right atrium
2. The blood then flows from the right atrium into the right ventricle
3. The right ventricle pumps blood to the lungs, where it picks up oxygen
4. This oxygen-rich blood is returned to the left atrium
5. The blood then goes to the left ventricle, which pumps it through the arteries and throughout the body.
6. When the blood needs to renew its supply of oxygen, it returns to the right atrium and the steps are repeated.

I was doing my usual hunt and search today for just your basic information about the dastardly disease known a pulmonary hypertension. I came across the above and when you think about it -- it tells exactly how the cycle or the interference thereof happens when you have pulmonary hypertension. When the blood (step 3) can't get to or through the pulmonary arteries we have TROUBLE.

Research or just searching reminds me of looking up something in a dictionary or encyclopedia. One word leads to another which leads to -- another clue which leads to another clue... just like in "National Treasurer", one of my favorite movies.

Just a little tid bit I found and wanted to share.

Merle
And remember to smile -- it's contagious

Pulmonary Hypertension ~ The Dastardly Disease

2010-11-23T16:59:00.021-05:00

I used to be healthy; I used to be strong,
I used to work most all the day long.
And then it hit me without even a clue
I wasn’t quite sure just what I could do.
I saw many doctors and then all those tests
I was diagnosed with IPAH and you know the rest.

Pulmonary Hypertension the dastardly disease
It’s rare with no cure and progression will be
It affects the right side of heart – the lungs big time too
Those arteries get constricted and give out on you.
It’s so complicated; makes it so hard to breathe
With having this dastardly, pulmonary hypertension disease.

Shortness of breath are symptoms at first
And sometimes it feels like your heart just may burst
That weight in your chest, fast heart beats oh my
And walking too fast may just make you cry

Some may get dizzy, or maybe pass out
Some are so tired - what’s that all about
Some cannot work and don’t understand why
With little exertion they falter not fly

Some have edema, that swelling so bad
Retaining that fluid just makes one so sad
Some may have chest pain and may have blue lips
This disease is too serious and needs to be nipped

Some may have Scleroderma, Sleep Apnea or HIV
Lupus, Raynaud’s Phenomenon or maybe COPD
There can be some causes or no cause at all
That’s when our ph doctors need to make the right call

We cut back on salt, smaller portions for meals,
Nutrition’s important and helps us to deal
We deal with life changes a whole new life style
Remember it’s doable – we’ll be here a while.

Many will ask when not feeling too well
How do I cope, how do I dwell
Do not despair and let me just say
There are treatments out now – with more on the way
With hope and with faith we have a good chance
To fight this disease and maybe then dance

Too many doctors; some specialist too
Do not understand what this ph disease can do
Luckily though and I praise God on high
There are ph doctors and nurses who do know the why
They treat us with wisdom and caring that shows
I thank them so much and I just hope they know.

They schedule those testings they start off real slow
An echo and blood work and others you know
A six minute walk, many PFT’s, oh gee
We scurry, we’re dazzled, we come then they see

You may have a CAT scan, a bron-chos-co-py too
And there could be several others, they make ask of you
And then the right heart cath the gold standard of all
This proves the diagnosis is proper – they made the right call.

Some take an oral an inhaled or such
Some with IV’s and more, oh, oh so much.
Revatio, Adcirca, Letaris, Tracleer,
Ventavis, Tyvaso are a few that are here
Then Veletri, Remodulin or Flolan may do
And some of these meds are almost brand new.

A hose in the nose; a tube in the chest
We struggle; we strive and hope for the best.
It is very doable this dastardly disease
With research abounding, there’s hope – so let’s breathe

Those researchers out there, those researching now
How can we help you, with what and the how.
We’re counting on you to brighten our life
You give us more hope to end all this strife.
We’ll give you some blood or whatever you need
And hope for a cure of this dastardly disease.

The cost of these meds is abhorrently high,
We suffer, we struggle, oh my how we sigh.
Some insurance companies won’t give us a dime
The government too in their wisdom declines
Then say they will help - but they have special rules
Most are careless and thoughtless and actually cruel.

There are specialty pharmacies and pharma reps too
With guided persistence they know what to do,
They tell all those doctors those specialists out there
About the ph meds and how they need treated with care.
Some have special nurses and advocates now
Who teach the new patients the why, when and how.
They treat us so special it’s learning one on one
They do have support for us, their work’s never done.

There’s a ph community it spreads far and wide
We meet in some chat rooms and support groups with pride.
I’ve made many phriends and I value them well
Unfortunately though, and I do have to tell
I’ve lost ooh too many – that hurts thru and thru
This dastardly disease can do that to you.

With our phamily support system we’re able to cope
We share with each other, there is always hope.
Hope for a future, hope for a life
Hope we’ll endure without too much strife

Although it’s not cancer the symptoms may be
As bad, sometimes worse than that horrid disease.
PH is progressive and can cause us much pain
We must not let fear grip us, there’s still much to gain
As mentioned before and remember this now
Pulmonary Hypertension is doable – we’ll be here a while.

Let’s take a deep breath; so slow if you please
It can strengthen those lungs with this dastardly disease
In through your nose and out through your lips
Slow is the key – please remember that tip.

And last but not least, remember to smile
As smiles are contagious you see
And when you feel down; and bring on a frown
Turn that frown upside down just for me
Smiles make us happy and will help us cope
With having this dastardly pulmonary hypertension disease.

Merle ~ there is always hope

I have Pulmonary Hypertension

2010-11-16T12:00:00.003-05:00

I have pulmonary hypertension ~ pulmonary hypertension does not have me.

Pulmonary Hypertension is a rare, life threatening, progressive and incurable disease of the lungs and heart. It occurs in individuals of all ages, races, and ethnic background; it is more common in young adults and is approximately twice as common in women as in men. This disease is often mis-diagnosed or under-diagnosed and again it can occur in any person, male or female from infant to senior citizen. It is not uncommon for a patient to visit 3 or 4 different doctors before an accurate diagnosis is made -- often losing a precious year, or more importantly, the deterioration for quality of life. Having this disease is a lifetime commitment for a patient and their doctor; with proper diagnosis and treatment, it is a doable disease for a time. Right now there are approximately 20K to 30K who are diagnosed with pulmonary hypertension in the US and approximately 150K world wide.

Symptoms of pulmonary hypertension do not usually occur until the condition has started to progress. The first symptom of pulmonary hypertension is usually shortness of breath with minimal exertion, you may also feel extreme fatigue, have dizziness or fainting spells, heart palpitations, a dry cough; all these can be symptoms. Edema or swelling in the ankles, the legs or the abdomen can occur; bluish lips and skin and chest pain may occur as strain on the heart increases.

Symptoms range in severity and a given patient may not have all of the symptoms. PH may be secondary to COPD, HIV or Raynaud’s Phenomenon, Sleep Apnea, Scleroderma or even Lupus. There are several other contributing diseases that can cause PH or there can be no known cause. Untreated, however, PH has a worse prognosis than many forms of cancer. Did you know lung disease is the fourth leading cause of death in the U.S., responsible for one of every seven deaths?

Lest we Forget

2010-11-11T09:42:00.003-05:00

From a newsletter from Senator Bob Casey: "As we mark Veterans Day, it is not only a time to thank our veterans for their service, but to also acknowledge the debt we owe them for protecting us and preserving our freedom.
When young men and women are brought into their nation's service a promise is made. We promise each veteran that their sacrifice and that of their family will not be forgotten.
To those who have worn the uniform and served their country; their sacrifices must be remembered.
There are approximately 23 million living veterans from different generations and with different needs.
This sacrifice is also borne by the families of veterans – by the mothers and fathers and especially the spouses and children.
I hope that everyone will remember the service and sacrifice of our veterans this Veterans Day and every day of the year."

Also remember this is Awareness Month for Pulmonary Hypertension. Another battle, a different field.
Pulmonary Hypertension is a rare, life threatening, progressive and incurable disease of the lungs and heart. It occurs in individuals of all ages, races, and ethnic background; it is more common in young adults and is approximately twice as common in women as in men. This disease is often mis-diagnosed or under-diagnosed and again it can occur in any person, male or female from infant to senior citizen. It is not uncommon for a patient to visit 3 or 4 different doctors before an accurate diagnosis is made -- often losing a precious year, or more importantly, the deterioration for quality of life. Having this disease is a lifetime commitment for a patient and their doctor; with proper diagnosis and treatment, it is a doable disease for a time. Right now there are approximately 20K to 30K who are diagnosed with pulmonary hypertension in the US and approximately 150K world wide.

Merle -- Always remember

Well Hold Me Back

2010-08-11T17:09:00.006-04:00

This just kinda tickles my funny bone -- and trust me after what I went through the end of June and all of July -- I need my funny bone tickled.

Last week I was switched from Flolan to IV Remodulin... they have been upping my dosage and I have been feeling, well actually wonderful!!!!... still waiting to get more of my strength back so I am spending a lot of time on my puter and less time on that treadmill. Having Pulmonary Hypertension can wear you out.

SOOOO, being the person I am, I was doing my "health review" searching and one of those was through the letters I get from the White House... yes THE White House. With a follow through on one connection about health care, I saw off to the side "schedule a call with the President", so I say to myself -- self what could they possible do to you -- give you a life threatening disease... well, I've been there, got that and even have a T shirt (PHA one and a CAPHS one) Pulmonary Hypertension can bring spice to your life if you let it.

I call the number push this button, push that button and get a recording on how to email to set up an appointment. It was a fast message and of course I did it wrong the first two times... third one was a charm... amazing what one little letter can do. Along with my request for a conversation with THE President I mentioned I am working on having Representatives co-sponsor HR 1030.... :o)

So this morning the phone rings and I answer Hello, this is Merle with the PHA Help Line and I hear a pause and then the voice on the other end says this is Tom from the White House. I said hello Tom and I know exactly which White House you are talking about :o) with a smile on my face (you know how you can tell when someone is smiling) --- thinking it's the Legislative Aide I had called yesterday whose name happens to be Tom. Well, Tom says he was calling on behalf of President Obama because I had sent a request to sechedule a conversation with him about health issues. A pause on my part more like a gasp. Tom then said that right now the President cannot schedule me in but he wanted me to know that he appreciated my contacting him (him meaning President Barack Obama) and just wanted me to know that. WOW... WHOO HOO A call from the Executive Office of the President... to me... WHEW!!!

I've decided I'm going to blog this... I'm happy, happy and I haven't been that way in a while.

Just put another smile on my face and you know those are contagious.

Outstanding PH Citizen....

2010-07-25T10:53:00.008-04:00

Well, WHOO HOO... A member of the Board of Directors for the Pulmonary Hypertension Association came to our Mercer Area PH Support Group and did a formal presentation for the Outstanding PH Citizen Award. I think I mentioned in a few previous posts that I was/am the (basically the national) recipient for this award. Such an honor for me and it still leaves me speechless... but my fingers aren't.. :o)

Roger Towle who is the Treasurer as well as a member of the BoD for the Pulmonary Hypertension Association, did the presentation this past Thursday after our local PA Representative Mark Longietti did an excellent presentation on Health and Wellness for Pennsylvanians (that will be posted on the Mercer web site).

I was excited and a tad bit nervous :o) and I'm sure I didn't give Roger a proper introduction but he came forward and did the presentation. This is awarded to a patient with pulmonary hypertension who exemplifies dedication to the PH community through any combination of the following: raising awareness; advocating for PH patients; participating in fundraising efforts; service to PHA; and, helping to provide the public with a voice and face of the PH community.

As a Helpline volunteer, advocate, and leader of three PHA support groups (Mercer, PA; Cleveland, OH; and Pittsburgh, PA) Merle has exhibited unyielding dedication to the PH community. In support of the 2010 Path to a Cure Mt. Kilimanjaro climb, Merle helped organize a Unity Walk with her Pittsburgh, PA Support Group earlier this year. In February 2010, she helped raise awareness of pulmonary hypertension and heart transplantation at and in a ballet at the Byham Theater in Pittsburgh. This year the Cleveland Area Group will be having their 4th Annual Walk and Roll in September to raise awareness about PH. Merle is a tireless advocate and lobbyist for the PH community, and has reached out to government leaders from a local to a national level and she doesn’t care which state it involves. If a pher needs help, she is there for them. This past May Merle was asked to speak at a luncheon group the day before the Ohio primary. With that presentation to the UAW, she was able to mail over 200 signatures to each Ohio Senator about S 2803 and also letters to 5 Congresspeople about HR 1030. She is passionate about being a face for the PH community, and has appeared on television and radio in the Pittsburgh and Youngstown-area on many occasions, as well as featured in numerous Pittsburgh and Cleveland-area newspapers. Her boundless energy, enthusiasm and caring spirit make her a true asset to the PH community.

This award was presented at the 9th International Pulmonary Hypertension Conference and Scientific Sessions: “Riding the Wave” this past June 25th – 27th in Garden Grove, CA I was unable to attend the conference and Roger was gracious enough to accept the award on my behalf. The afternoon of the presentation I received a phone call from CA and I was asked if I would like to make a brief statement. "Remember there is always HOPE and to always SMILE, IT'S CONTAGIOUS".

At our local presentation, Roger mentioned that among previous recipients were founders of the PHA, some who had raised over one million dollars for the association; the author of the PH Survival Guide; I am the 9th recipient.

It is a beautiful trophy/award and is also very heavy :o). It will not only hold a special place in my heart but a special place on my mantel.

Don't for to Smile -- it really is contagious.

Reflections

2010-07-16T17:29:00.004-04:00

This was sent to me by my phriend Ann, whose daughter Margret had pulmonary hypertension. She has allowed me to share these beautiful memories with you.

Reflections of the second anniversary of my daughter's death

The sun rose today, just as it has every other day over the last two years, but behind clouds. It rained. Thanks universe, I appreciate the sentiment.

I have been thinking of my daughter Margret today, and remembering her fondly.

I've been remembering good things, fun things, happy things like what a great giggle she had, how much she liked ice cream, how we would sit together and watch Dancing with the Stars - especially the season Billy Ray Cyrus was on. She would clap her hands in delight, sometimes giggling at the same time. She cast ALL her votes for Billy Ray that season. Until he had to leave.

Did I cry today? Yes, a bit. I cried as I was remembering my feelings when the doctor said "end stage," how I was shocked, yet at the same time, not really surprised at all. Then the scramble to let people know it was time to say goodbye. I'm grateful to each and every one who came to tell her, one last time, how much loved she was. Her passing was peaceful, and quick. I held her hand, and tears rolled down my face. The feeling as I let go of hope I didn't know I was still clutching was like water pouring from a pitcher, vanishing as it streamed from the pitcher's lip. Not a very good explanation, I don't think, but the best I can manage. Then numbness set in, and the numbness let me function in those sad first days after.

Margret belongs to the past. Never again will I track doctors appointments for her, make sure she has all her prescriptions refilled in good time, check to see that she's up with her alarm clock in the morning, help her change an oxygen tank. Lots of things in the Never Again list.

Margret also belongs to the present because I think of her every day. Some days I smile, remembering, while I put the silverware away, what an amazingly consistent and neat job she made of it doing the same thing. Other moments are less happy. I still miss tucking her in, the good night hug and kiss, little interchanges like our "Good night, Margret, sweet dreams." "Good night Mama, I love you."

She also belongs to the future. My newest granddaughter, according to her mother, makes some of the same faces that Margret did, some of the same gestures, and sometimes doesn't close her eyes all the way when she is asleep, another Margret trait. That is comforting in a way I can't explain. It just is.

Yes, I'm still here. I'll never forget my sorrows, but I know I'm not finished with my joys. I'll go on living and loving and doing fun things.

I'll rise again tomorrow. Just like the sun.

To read more about this amazing young woman go to: Incredible Gift, http://incrediblegift.blogspot.com

Pulmonary Hypertension does not have me

2010-06-22T18:50:00.002-04:00

In my previous post I said when I start a support group meeting I say: I have pulmonary hypertension, pulmonary hypertension does not have me. Some of the members have told me this gave them hope... hope to face this disease and not let it consume them. When you have a life threatening dastardly disease you look at things a little differently. Pulmonary arterial hypertension is a progressive disease, marked by shortness of breath and fatigue which can be fatal if untreated. Of course there are other symptoms but those are the top two.
This past month has been an emotional roller coaster for me. I am the recipient of the "Outstanding PH Citizen Award" which will be presented by the Pulmonary Hypertension Association this coming weekend in CA. I cannot attend but trust me when I say "I will be there" -- I have great phriends. And now I want to tell you about them.
When I was notified about the award I reached out to some of my media contacts. The local newspaper did an article and another local paper, a Youngstown, OH TV reporter, Susan Campbell of WFMJ, contacted me and wanted to do a report on PAH. The reporter and a cameraman came to my home and the interview began and lasted almost an hour and a half. We covered pretty much everything. I knew the report would be very short and I am amazed with all that info how concise and well covered that report is. They also have a doctor do the clinical part of the disease and the whole thing is only 2 minutes. I added another one of my "lines" and this brought on some special responses. To view the report copy and paste http://www.wfmj.com/global/category.asp?c=179433&clipId=4871301&topVideoCatNo=127724&autoStart=true
My phriends laughed and basically said you go girl with my remark of "Is it ok to say this: I don't want others to end up being like me with a hose in their nose and a tube in their boob".
I host chat and in my chatroom I don't allow cussing -- and when they heard those words coming from my mouth they couldn't believe that my mild mannered "Clark Kent" female version, said such a thing. In honor of that TV report they came to chat with such names as: Booberella, Boobette, Boobalicious, Lolalabooba, Boobless, Boobsmasher, Boobalicia, Sir Boobless, and Tubelessintheboob... That brought a smile to my face and they made me proud... they also said I made them proud and laugh at the same time. As the evening came to a close I expanded on a line from Bob Hope: Thanks for the mammories... Remember to smile, it's contagious.

Merle

I have Pulmonary Hypertension

2010-06-08T09:30:00.010-04:00

Lately I have been asked to do presentations at various "groups"... in mid April a member of the Mercer Area PH Support Group asked if I would speak before his retiree group about pulmonary hypertension. He said they would have one more meeting before their summer break but it was kind of a "political" meeting being the day before the Ohio primaries. Well, you know me my ears perked up when I heard political. He told me I would have about 4 minutes as Congressmen, local and state politicians would be there. I said I guess if I can do something in six minutes on TV, I could do 4 minutes before a group. I asked how many would be attending thinking 25 to 30 (I wanted to be sure I had enough brochures to pass out). He said between 8 and 900. Say what!!!
I contacted the Pulmonary Hypertension Association saying I needed a rush for the "Helpful information for patients and families", a brochure for and about pulmonary hypertension. I always have 25 to 50 but not enough for a group that large. The UAW -- yes THE UAW.
Paul, my friend, made arrangements to make copies of letters that could be mailed to Federal Representatives and Senators about HR 1030 and S 2803 respectively; the Tom Lantos Pulmonary Hypertension Research and Education Act of 2009.
Now in April I spoke before a ladies business group about Lupus and Pulmonary Hypertension -- thinking 1/2 hour presentation would be enough, I was told, oh no, you are the key note speaker, take an hour to an hour and a half. So I prepared, I added a little more here, I added a lot more there. I made a power point presentation with pictures and had 28 full pages. I was ready, I "done good". Now I had to switch from Lupus and PH to just pulmonary hypertension and do it all in 4 minutes.
This had to be concise and to the point, I wanted to cover symptoms, causes and effects (those side effects) and most importantly cover the research and awareness bill and make it interesting but not too scary. After all, having pulmonary hypertension is scary.
May 3rd finally arrived. I was ready and good to go. Tom and I drove over to Boardman, OH to a large conference center. There were 5 or 6 "food stations" around the perimeter of the room for the buffet luncheon that would be served; it is a huge dining room. Round tables for seating 10 with white table clothes were set through out. There were several tables at the entrance with brochures of "VOTE FOR ME" and why. As I mentioned, several politicians were to be there. Brochures and flyers on the dining tables as well.
The meeting began, one by one the politicians were asked to speak. Apparently one of the Congressmen was running late so I heard: "Is Merle here now and could she speak"... Woo Hoo -- my turn. I made it to the podium, I was only two rows back.. I had my Flolan (an IV in my chest that goes into my heart) -- attached, I had my portable oxygen tank (canula in the nose) -- attached. I had 3 steps up to the podium; I shut off the pulse on the oxygen and put it on full flow. I didn't want that little puffer noise to distract anyone while I was talking.
I started off with "Good Morning" and almost fell over when a booming "Good Morning" came right back at me. Now as I recall, when I've heard or even presented talks when you say good morning or greetings of sorts you might get a meek and mild response if any. Not here, not at the United Auto Workers Local 1112. These men and women let you know they were there and ready to listen.
I introduced myself and thanked Paul and the UAW for asking me to speak and then I said: "I have pulmonary hypertension - pulmonary hypertension does not have me"!!
I explained what pulmonary hypertension is (Pulmonary Hypertension is a rare, life threatening, progressive and incurable disease of the lungs and heart) also who may get it; the possible whys and for some no known reason. How it is often misdiagnosed or not diagnosed and how long that process can take. Then the symptoms (Symptoms of pulmonary hypertension do not usually occur until the condition has started to progress. The first symptom of pulmonary hypertension is usually shortness of breath with minimal exertion, you may also feel extreme fatigue, have dizziness or fainting spells, heart palpitations, a dry cough; all these can be symptoms. Edema or swelling in the ankles, the legs or the abdomen can occur; bluish lips and skin and chest pain may occur as strain on the heart increases) and the bill now before Congress. I finished with a tribute to Paul's sister Betty who died of this dastardly disease last year and thanked them again for the opportunity to speak to them.
The Congressman came, did his presentation and told everyone what would be happening in the valley and what he hoped for. Very encouraging. Lunch was then ready.
Now on each table there were several letters (but not enough) to either Representatives or Senators and during my presentation I asked that they put their name and address on these and I would mail them or they could and to mail to the local office not the DC office. We gathered over 200 signatures for each Senator and enough letters to mail to 5 Congresspeople throughout Ohio. I need to add that Congressman Tim Ryan has co-sponsored our PH Research and Awarness bill each time it has come before Congress (that's 3 - the most recent being HR 1030) Another Woo Hoo moment.
During and after lunch several people came to me saying their sister, or I was just diagnosed, or someone they know may have this disease. I had several "Envelop of Hope" post cards that PHA has, you fill them out mail them in and the PH Association will mail you a packet with lots of info. People brought over the letters to be mailed, one of the members asked if a donation could be made to the association (PHA), it was voted on and agreeded to, then after the meeting there was not one brochure about pulmonary hypertension left on the tables nor any letters -- plenty of the political info :o)
THEN a few weeks later I receive a letter from PHA saying I am to be awarded the "Outstanding PH Citizen Award" I would be the 2010 recipient, yours truly, me, myself - I.
The letter stated: Awarded to a patient who exemplifies dedication to the Pulmonary Hypertension community through any combination of the following: raising awareness; advocating for PH patients; participating in fundraising efforts; service to PHA; and, helping to provide the public with a voice and face of the PH community. Well, hold me back... What an honor, I was speechless (key word there is WAS) and in awe. I am still flying high -- my local newspaper did an article about it and tomorrow a local TV station is coming for an interview

RMEMBER TO SMILE -- IT'S CONTAGIOUS
Merle

www.firstgiving.com/CAPHS

Put a smile on my face

2010-05-09T11:24:00.009-04:00

About a week ago I had to replace my TV remote. It was among the missing and I think what may have happened is the end table it is usually kept on is right beside a wastebasket... are you having visions of it being bumped or knocked into the waste basket running through your head. Well, that's the only thing I can think of and I checked all chairs and the sofa to make sure it wasn't hiding beside the cushions or under them. Naturally I didn't think of THAT until the trash has been put out for the week. It was getting old anyway, not all the buttons worked; the back button, the mute and another: I had tape around it to keep it together...
So the next day it was among the missing I had to physically get up and turn on the TV, I had to get up and change the channels, adjust the volume do the whatevers that can normally be done with a remote... whew. Now for a normal person this should not be too much of a challenge but when you have pulmonary hypertension it can be. Getting up can be a strain on your heart if your heart isn't in all that good of shape. I wasn't worried about my legs as much as how I got a little sob (that's short of breath, thank you very much) every time I had to get up, go to the TV and make those adjustments. You may or may not know, pulmonary hypertension is a rare, life threatening, progressive and incurable disease of the lungs and heart. Pulmonary hypertension is often misdiagnosed or under diagnosed and can occur in any person, male or female from infant to senior citizen -- and I have it and it's not fun. :o(
Anyway, the next day when Tom is over -- the healthy one, although of late he hasn't been feeling too well -- he makes comments about the remote. So I say lets go to Wal-Mart and I'll get a new one. As I mentioned I really needed a new one anyway.
Off to Wal-Mart we go. We arrive and I head right to the electronics department. We look at 3 or 4 and settle for the one in the middle - price wise. We are getting ready to leave and Tom said aren't you going to look at anything else, I said nope, I'm done. (Haven't been feeling up to par and I didn't want to walk too much around the store).
Well, all the registers are full, people are lined up 3 or 4 deep except for one of those 12 items or less and it was in the back or toward the front of the store. I head for that one and I said to the cashier "You look so lonesome I'd thought I'd stop"... and she said: "I'm so lonesome I could cry".... ;o) That just tickled my funny bone so I said -- "That should be a song tile"... We both laughed. Then she started singing the song and I said who sang that and so the fun began. Tom said Terry Bradshaw (Steeler quarterback from years ago). I said I thought it sounded like something Johnny Cash would sing. She called the manager on those phones they have and the manager said Elvis :o) >
We all laughed as she rang up the one item I had. Everyone of us had someone different in mind. I guess the curiosity got the best of the manager as she came over singing "Hear that lonesome whippoorwill... she said she knew it was Elvis, I said seems more like Johnny to me and Tom said nope it was Terry.... and we all sang "I'm so lonesome I could cry". I thanked her for giving me such a good laugh cuz we sure were laughing and smiling and to have the manager come over and join us... Just kinda made my day.
BUT, it doesn't end there. When we got home we programmed the remote got it all working properly and turned on the TV, checked it out... yep we done good and started watching TV.
I kept smiling just thinking about that lonesome whippoorwill "he sounds too blue to fly -- The midnight train is whining low -- I'm so lonesome I could cry." It got the better of me and I just had to look it up. I hooked up the lap top and googled You Tube and I'm so Lonesome I could Cry. GUESS WHAT -- we were all right/correct. Actually is was a song written and sung by Hank Williams in 1949, also sung by Marty Robbins, Johnny Cash, Elvis, Dean Martin, Terry Bradshaw and several others.
Still brings a smile to my face when I think about it -- laughing is such good exercise for the lungs and I really need a lot of laughing/exercise. I wanted to call and tell the manager and have her tell the cashier but Tom said no...

Remember to SMILE -- it's contagious...

Exercise, an Inspiration

2010-03-27T16:28:00.004-04:00

"She was hospital bound for quite a while and when she was able to return home she had a nurse come -- with that first visit she was able to take 2 steps and gradually built that up. She can now do light house work, can go shopping and has gone from 12L of 02 down to 1L".

Another chatter and I decided we would be exercise buddies (we're several hundred miles apart, but hey) so this morning, via cell phone, we started an exercise program. She would use her gizmo and I would use mine -- I have a treadmill which has been gathering dust. I did 4 minutes -- 2 more minutes than I was doing the last time I was able to get on it. I saved the chart I had when I did pulmo rehab and added some lite arm exercises. My doctor told me which I could and could not do. He told me if I got short of breath, to stop and take a break, then go back to doing what I was doing. I am to continue to do the treadmill and gradually add to those walking going nowhere minutes.

Having an exercise buddy has been an inspiration, it gets me going and makes sure I will continue to do exercise. Exercise is so very important for those of us with pulmonary hypertension. It's not only good for our heart but our lungs as well, we need to keep our body active if we want to continue to keep on keeping on. We have to know our limits but we have to be able to use those limits to our best ability.

I'll try to keep you posted on how I do.

Remember to smile -- it's contagious.

I can see the green grass

2010-03-15T17:34:00.004-04:00

Last Thursday I woke up and was a little sob -- for those who don't know, that means short of breath. I looked out the front window and I could see FOG -- FOG, oh no. I have trouble breathing when it's too humid. I have pulmonary hypertension and for some of us humidity can be an issue.

Anyway, besides seeing fog I didn't see that white four letter word stuff that has been on the ground most of this winter. We were hit hard this winter with that white fluffy stuff -- that four letter word, was over 3 foot plus deep at times. Wednesday we still had about 4" left and on Thursday morning pretty much zip, nada, not much at all. There some small white patches where it had been plowed and stacked high... not so high now :o) There was a very light rain during the night and washed it all away. It was suppose to reach the mid 40's -- whoo hoo a heat wave.

Tom came over late morning and we had plans to go to the store -- my monthly toilet paper run -- when I run out of toilet paper -- I run to Wal-Mart. Well, I don't run but I get there as quick as I can. On the way to the store we went by the high school and out in the field were students dressed in baseball uniforms and playing or practicing the game. Wow, that does mean warmer weather is on it's way. This has been such a LONG winter. Exceptionally cold, exceptionally snowy.

When you have pulmonary hypertension you have to be careful of the cold air. Breathing that bitter cold air can do damage to your lungs and we (phers) either need to wear a mask or have a scarf over our nose and mouth when we go outside. Now freezing weather is bad enough -- 32 degrees -- but when it drops to the single digits and even sub single digits it's not good. Because of the bitter cold, I didn't go out much this winter. When I did go out I was lucky that the sun was shinning those days.

I bought my monthly supplies, we stopped for take out on the way back and headed home. It was so nice to get out and since then, I've been out twice -- who could ask for more. One outing was for the Cleveland Area Pulmonary Hypertension Support Group. The first of the year, the first of the decade. We don't meet during the winter months because of the weather and it was great to get back together, to share to learn what we can. Our presentation was on "How to Eat Having Pulmonary Hypertension" -- great interaction and we learned a lot. Support is so important for many who have pulmonary hypertension; it's a scary disease, a life threatening disease that affects not only the lungs but also the right side of the heart.

Remember to smile -- it's contagious.

Merle

On one of my previous posts Karen wrote and for some reason her note was deleted. I remember her saying her Mother was new to PH. Please write back and I will help in anyway I can.

HEART ~ Function vs Emotion ~ A Ballet

2010-03-02T09:41:00.009-05:00

The weekend of February 19th and 20th, it was my privilege and honor to participate in a ballet. And yes, I said participate in a ballet. Maria Caruso, Artistic Director of Bodiography Contemporary Ballet was approached by Dr. Dennis McNamara, Director Heat Failure Transplant Program at UPMC; who attended a previous ballet about a health issue. His daughter is an apprentice under Maria.
Knowing Maria as little as I now do, I can imagine that first vision she may have had. She is a remarkable young woman full of vision, passion, emotion, nimbleness and forth site. She is a go getter and persistent in doing what needs to be done – to the point when it was decided a ballet would be performed about heart transplant patients and pulmonary arterial hypertension patients – she asked and was allowed to watch a heart transplant. Now how devoted is that.
Notes were sent and a meeting was planned in September. Several heart transplant patients and several pulmonary arterial hypertension patients met for the first time to discuss the possibility of having a ballet in February – heart month. We were to meet at the ballet studio in Squirrel Hill.
Holly, a phriend and member of the support group, and I decided to see what it was all about. Bryan, her husband said he would drive, so off we went to see what great adventure lay before us. We arrived in Squirrel Hill at the appointed time, there was a nice parking garage not too far from the studio, with just a slight incline to get there. I jokingly said to Holly, I just hope this isn't on the third floor. Well, guess what. I looked at those steep steps, I looked at Holly and Bryan and said there is no way I will be able to get up those stairs to the third floor. Holly felt the same so Bryan went up to the studio and mentioned that we would not be able to do the stairs. Maria came down and we all went across the street to a cafe and had our first of several meetings. During those meetings the intent was to see how we as transplant patients and PAH patients felt – what we had gone through; what we are we going through now. The photo shoot was set on the third floor so Holly and I would not be in the billboard photos that would be placed around Pittsburgh announcing the ballet.
At that first meeting there were several of both types of patients but with work schedules and distance involved, not everyone could continue meeting as hoped. Four heart transplant patients and two PAH patient would be part of the HEART TEAM. The dancers practiced. we met at the cafe; the dancers practiced more frequently we met at the cafe; we then met at the Club One Fitness Center for our first all together rehearsal.
We the patients, watched as the dancers danced and Maria counted out the beats. She told us the musicians would be Cello Fury (three classically trained cellist and a rock drummer); she had a tape of the music they specially composed for this ballet. I watched in awe as those dancers moved about to the beat of a heart; to the moan and drone of a sorrowful mode moving on to the upbeat of joy and extended life. The movements were more of a flowing motion. Their movements were graceful and emotional and filled with passion. A lump grew in my throat and tears welled in my eyes as I saw what Maria in her vision had created. The drive home that evening Holly and I spoke of the emotion they had captured of our struggle prior to and now with treatment; you could see the same for the heart transplant patients; their struggle prior to a transplant and now their new life.

I made fliers for the event; sent them to the appropriate sources. The pulmonary hypertension centers in Pittsburgh, the Pulmonary Hypertension Association in MD so all PAH patients in the area would know of the ballet and attend if possible. UPMC graciously bought tickets and any heart transplant patient or pulmonary arterial hypertension patient and their family members could attend at no charge.
The special weekend was fast approaching, I was so excited it was a good thing I had some self-control. I did buy myself a new top for the occasion – purple with a black sparkly bow on it and a black sweater with sparkles too. They were on sale, I'm sure left overs from New Year's Eve. Holly and I decided we would wear something similar – color-wise – purple to match our lips. Once someone asked me what shade of lipstick I was wearing. I said it's called lack of oxygen... ;o) Holly bought me a “bling” to match hers. A silver heart with purple jewels throughout. It is beautiful.
On Friday we were to meet at the Byham Theater at 1 p.m.. This theater was built in 1904 so you can imagine the culture that oozes from it's walls. It was restored in 1999 so technically/electrically it is very up to date. The murals and such are typical of the turn of the century – the other turn of the century. It is a captivating structure. We were to enter at the back of the building and had a special code to punch in. We opened the door and low and behold STAIRS, oh no. I had my cart with my spare meds and spare oxygen, there was no way I would be able to lug those up the stairs, then Holly found an elevator. Whew, saved again.
The dancers were stretched out in the main lobby, Maria was counting out the beat as they moved about and got their muscles ready for the evening performance. Watching them wore me out and we hadn't even started. I remember back when I could do things like that. I took dance when I was a kid... 4 or 5 years old but I always loved to dance – to go out dancing. They use to call me twinkle toes because once I got up on the dance floor, I never sat down until the music stopped. Now, well now – we won't get into that. I can tap my toes and shake my shoulders a bit and roll my hands/arms until I'm a little sob (that's short of breath) thank you very much.
The rehearsals began and yes there is a 's' at the end. We went through the performance; Maria is an excellent director – lighting had to be just right; those of us who are non performers had to learn how to walk into those lights that are set on the side for the proper ambiance. Several adjustments had to be made and re-rehearsed again – for the dancers again and yet again. Things had to be perfect. We had a break which gave us enough time to go next door to the Renaissance Hotel for a light dinner. Several of us went together and one of the heart transplant patients saw some friends from CORE (Center for Organ Recovery & Education) and when Pat told them what we were doing, they bought our dinner. Such an incredible gesture. We headed back and when we walked into the theater itself there were the dancers on stage still going over their performances. Practice makes perfect. One more run thru and then it was time to put on our best and get ready for the real thing. I didn't wear a tutu.

When the curtain opened we were in a tableaux arrangement; the music began, the dancers danced. Each of us either had a dancer or maybe two or three dancers to express our function.

“Act I – Function: The first portion of Heart is an abstract rendering and representation of the organic function of the heart. It begins with the introduction of our collaboration and the visualization of the connection between each patient and their heart. This has been created to demonstrate the color, texture, movement, flow, and macrobiotic behavior of the organ itself as seen and felt from the eyes of the choreographer during heart transplantation.”
My dancers were Nicole and Maggie who did an excellent presentation of the struggle we with pulmonary arterial hypertension have and as I explained to them my struggle.
“Act II – Emotion: The second portion of Heart depicts the physical preparation prior to heart transplantation as well as the operation itself. The surgery will be visually demonstrated by world-renowned transplant surgeon Dr. Robert Kormos. The second act then displays the choreographer's physical interpretation of each of the patients' experience with heart disease (PAH too)
“Patient and performing artists meet again to represent the unification of a common organic disease. As the patients depart we prepare for heart transplantation and anesthesia.
“Each patient's heroic story is represented by yet another performance by their now emotional representation.”
During Act II as Dr. Kormos and Maria (his assistant) performed open heart surgery a dancer mimicked the struggle a heart would have prior to and during the surgery. The doctor then lead the dancer off stage representing the old heart and a new dancer dressed in white was led on to represent the new heart prior to blood being added.
The dancers did single performances; in groups of several of the artists and in groups of just two or three. When it came time to do the 'patients' emotion the audience would note that each patient sat at the edge of the stage while their dancers showed the struggle some of us have gone thru and some are still going thru (PAH patients). It truly was very emotional.
Nicole and Maggie showed the pressure that I have felt in my chest when Maggie stood on top of Nicole! Then the closing of that segment Nicole dragged off Maggie showing the weight of my oxygen tank and all the other just-in-case stuff I have – such as my Flolan, my mixed meds my just in case meds.

Because of the length of our stay – being there early for rehearsals, I knew I would run out of oxygen in my marathon tank so I had to bring back up; I also had to bring my mixed medicine and my back up medicine; a change of clothes etc.everything for this now just-in-case life I lead as do other pulmonary hypertension patients lead. I used my red carry cart. Friday night I left it back stage, Saturday night I used it on stage. The back up oxygen is very heavy and Friday night it slipped off my shoulder and wrenched my arm. Soooo Saturday night the cart was with me.
After the performance there was a question and answer time and the audience had the opportunity to ask questions. Many were directed to the heart transplant patients but several were directed to me or Holly with questions about pulmonary hypertension. Each of us had a chance to share our feelings and emotion of the night and it truly was an emotional time. Tears flowed as we shared our appreciation for the accomplishment and of the awareness that was presented this past weekend. This performance was awesome and Maria and her dancers are phenomenal. Maria gave each of the patients a bottle of champagne and some gummy fish, we gave her a bouquet of red roses. Holly contacted me Saturday morning and asked if I had any phenomenal bracelets – those that say phenomenal hope (for and about pulmonary hypertension) – she wanted to give two to her dancers. What a wonderful idea so I made plans to give Maria and each dancer a bracelet for being such phenomenal people; we also gave our new phriends, the heart transplant patients one for being such phenomenal people for what they went thru and the hope they now give us.
After the performance we exited stage right... I gathered up my coat, used oxygen tanks and was heading to the lobby to meet my family. Oops... the incline in the theater -- how soon I forget things. I thought it would be easier for me to meet them in the lobby than for them to fight the crowd and come get me. I saw a young man and asked if he would pull my cart up to the lobby. He said he would and was surprised with the weight of the cart even though it was on wheels.
This was a phenomenal event – a time in my life I will cherish forever. I thank all those who made it possible and also to all who participated in making it a true and emotional success

Path to a Cure

2010-02-25T10:54:00.004-05:00

I just spoke with the climbers... Jessica is back to feeling better she said the two doctors took very good care of her. They are about ready to go to bed as it is 6:30 p.m. their time (10:30 a.m. eastern). At 11 p.m. they will wake up -- have something lite to eat and then climb to the summit... remember the sunlight; they have to climb during the night.
I asked Dr. Benza if they were above the treeline now and he said they are looking DOWN on the clouds!!!
Unfortunately, we were cut off but I was reconnected... so to make sure they got all our well wishes, I told them how every one is rooting for them from afar -- how those positive thoughts and prayers are going their way and Dr. Benza said they will do their best to reach the summit -- it is the highest any of them have every climbed and more of a challenge. The connection was cracking again and I know they are tired so I felt a 15 minute conversation was the best we could do right now. They will call again on Sunday when they reach base camp.
What these doctors (Dr. Benza and Dr. Franz) and Jessica are doing is above and beyond the call.... To try and have or give yourself pulmonary hypertension, I guess to better understand those of us who have it, and to raise funding for research and awareness for this rare and life threatening disease; well, I just don't know what to say. Thank you just doesn't seem to be enough for what they are doing for all of us in the PH community.
If you have pulmonary hypertension you may know that "sound" when someone talks.. their speech just isn't the same... I could hear me several years ago before I was on treatment; I still remember the struggle to talk. They weren't that bad but I could hear the strain in their voice. Or maybe it was the connection but I don't think so.
I wish them well -- sending those positive thoughts and prayers. YOU ARE AWESOME!!

Merle -- remember to smile, it's contagious.

They made it to the summit!!!!

Unity Walk - PGH

2010-02-14T09:54:00.007-05:00

On January 29, 2010, plans had been made to have a Unity Walk to honor and make note of Pulmonary Hypertension Specialists and Pulmonary Hypertension Association Scientific Leadership Council members Drs. Ray Benza and Robert Frantz, along with Jessica Lazar, PA, who will know firsthand what it means to be breathless. In a joint effort to raise global awareness of PH, they will tackle the ultimate challenge: climbing Mount Kilimanjaro, Africa's highest mountain! Dr. Benza and Jessica from Allegheny General Hospital are not doing this just for those patients they have but for all those PH patients in the PH community -- as is Dr. Franz from the Mayo Clinic.
Western Pennsylvania is hill country, not like Mt. Kilimanjaro but very hilly, and Pittsburgh itself was built on or around hills. They have many stairways to get from one street to another –- a totally different level and very steep -– we’re not talking second story to a home level; we are talking up the side of a hill level. It is also Steelers Country and if you are into football you will know what that means. Pittsburgh is also known as the City of Champions - this past year the Steelers won the Super Bowl and the Penguins won the Stanley Cup. Woo Hoo!
Now for the Unity Walk, we were to meet in the Sandusky Waiting room where Michele, nurse specialist for PH, took us to the eighth-floor PH research area. Because we’re in Western Pennsylvania during the month of January, our flier advertising the walk stated, “weather permitting.” Some days in January can be balmy, which would be just above freezing; this was not one of those days. It was 8 degrees when we left home with a wind chill of -2. THAT’S COLD! The Weather Channel predicted snow flurries in the surrounding area, so I was not expecting the usual turnout, nor even as many of those who had signed up.
We went to the conference room and in the center of the table was a cupcake Mt. Kilimanjaro –- really cute and very tasty. At one end was a mountainous stack of lunch boxes for our post-walk luncheon; the other end had backpacks with a water bottle, stress ball and an exercise stretch band. We were set and ready. On the white board was a hand-drawn Mt. Kilimanjaro with stick people of Dr. Benza, Dr. Frantz and Jessica with “Mt. Kilimanjaro or Bust” written in the mountain.
Jessica Lazar, a physician assistant at Allegheny General, is going on this infamous climb (be sure to read her blog posts) and she told us of her training involving climbing those stairs in the ‘Burgh, climbing the stairs at the hospital. She mentioned that when Dr. Benza makes his rounds along with the fellows, they use the stairs to the 16th floor. Jessica smiled when she told us that some of those fellows are losing weight while being in training with Dr. Benza.
She explained the equipment required: special shoes/boots, wool as opposed to cotton, layers of clothing (but not too much, or you will sweat, and that could freeze). The material required for climbing has to be something that will keep the moisture away from your body, not keep it close to you –- think of a bath towel and how that holds moisture. “Cotton kills” is a term used by climbers.
Through these past months of training Jessica has climbed “hills” around Pittsburgh, climbed those steps mentioned earlier and she learned to adjust her clothing as the weather went from fall to winter as Mt. Kilimanjaro will go from the jungle heat to an arctic freeze. She showed us a little lamp, like a miner’s lamp (remember, we’re in coal country, too), and this one had stretchy string to put around her head, as even one with a leather strap or a “hard hat” type would add extra weight. The climbers weigh their clothing and what they will be carrying in their backpacks. The weight they carry when they start in the morning may only be a few pounds, but by evening it will feel like hundreds of pounds. So every ounce counts. That reminds me of my Flolan pouch; it may only weigh 4 or 5 pounds, but some days it feels more like 20 pounds -- and, again, that is a reason these clinicians are doing this: to feel what we are going through to raise funds for research and awareness of this dastardly disease. Jessica’s emotional reason why she is doing this put a lump in my throat.
She told us of the packers or guides that are required to trek along with our climbers. They will carry the tents, major food and other heavy equipment. When at the lower levels of the mountain, you are not allowed to go off alone, as those hazardous animals are on the loose –- lions and leopards and snakes, oh my. At a higher level above the jungle, they are still some critters to be aware of. Above the tree line, no hazardous critters –- just bitter cold.
Each day, a climb will consist of approximately eight hours up. They reach a level and go off to the side to adjust to the altitude change, and Jessica told us it’s like taking two steps up, one step down and a side step along the way. I wonder if they’ll make a Mt. Kilimanjaro two step dance ;o). The packers set up the tents and prepare their evening meal. The climbers will carry enough food and water for a day’s use, along with several just-in-case items.
This climb can create altitude sickness and it is recommended they drink 4-5 liters of water per day, and eat lots of food for energy. A common symptom of altitude sickness is loss of appetite, nausea, and vomiting… and if they don't eat and drink, the altitude sickness gets worse. She told us how they may not realize this symptom and how they have to rely on each other when and if they get affected to do what they can to overcome this illness or it’s a quick trip back down the mountain. Jessica has given up caffeine now, as stimulants can create an issue. She said it’s better to have withdrawal symptoms now then when climbing up that mountain. Jessica plans on taking her oxygen sats when she reaches the summit, and one of our members volunteered a pulse ox (light weight) for the climb. The climbers also hope to be able to communicate with PHA on a regular basis while climbing.
The last climb to reach the summit will take approximately 15 hours, and this will be done at night as the bright sunlight will be too overwhelming for a day climb. The climb down will take one or two days as opposed to the seven days it takes to reach the summit. Climbing down is a reversed strain on those leg muscles and the knees, so caution is still in vogue. We thanked Jessica for sharing her thoughts with us and let her know how much we appreciated what she and the doctors are doing for all of us.
Michele, Carrie and Lynn (who work at AGH) then introduced us to staff who work in the research department of the Gerald McGinnis Cardiovascular Institute at Allegheny General Hospital, and we gathered ourselves up for our Unity Walk -– a tour of the PH research department. Our first stop was the Bio Engineering Lab where Dennis Trumble, a bio engineer, showed us a heart made to scale and pointed out the pulmonary arteries, the aorta and other tubes either going to or from the heart. He also showed us an oversized heart and explained why it could be in that condition. Dennis then showed us a pacemaker, a hydraulic pump of sorts and another medical device created at AGH that he is working on –- all these to help the heart and lungs.
We then went on to Dr. Benza’s storage room, where he has DNA samples stored in several freezers for use in PH research. The room is specially equipped to handle the heat from the freezers, so the room is basically at an even temperature.
Then across hall to the Gene Therapy Lab. Dr. Michael Passineau showed us various testings in progress and equipment that is used and how they will benefit us as patients or retard the progression of PH. There is a new not-ready-for-trial-as-yet med and the catheter used on the rats is about the size of human hair. When viewed through the microscope, it looks about the size of a thin straw. Some of us were able to take a peek. It truly is amazing what is going on in their research department. The rats are doing well.
Jessica then took us down the hallway with a mural her son’s daycare classmates made: a construction paper giraffe and a lion, whose mane is made from their hand prints. “They done good."
Now back to the conference room for lunch and the raffle drawings. We were told that the baskets were brought to the cafeteria each day with special totes in front to know which basket you want to win and where to place your ticket. There were a dozen or more baskets to choose from: restaurants, wine and cheese, books, coffee, attend a sports game and a doggie basket (the basket itself was a doggie bed; it also had a food dish and various other goodies a dog would enjoy). :o) several others as well. AGH collected $1,300 from the raffle drawing.
The Pittsburgh goal for the Unity Walk was $2,000 and each support group across the country was asked to try to raise $1,000. Actelion is sponsoring a dollar-for-dollar match of up to $50,000 in donations. The climbers’ goal is to raise $100,000 for PHA’s PH Research Programs and patient serving programs; we are very close to reaching that goal and many of the support groups haven’t even had their Unity Walk as of yet.
My agenda was very brief but I did ask all to call or write their legislators often to either co-sponsor HR 1030 or S2803. I shared information about PHA’s upcoming International Conference in California in June, and for folks to get their flu shot.
I want to thank United Therapeutics for providing our lunch for the day, also Gilead Sciences for providing our backpack specials, and especially the nurses and staff at Allegheny General Hospital for all the help they provided prior to and during this walk. Those members who came submitted the contributions they collected, several of the pharmaceutical representatives who participated added their donations and our total for the day was $3,250 –- with donations still coming in!

Read their blog: On January 29, 2010, plans had been made to have a Unity Walk to honor and make note of Pulmonary Hypertension Specialists and Pulmonary Hypertension Association Scientific Leadership Council members Drs. Ray Benza and Robert Frantz, along with Jessica Lazar, PA, who will know firsthand what it means to be breathless. In a joint effort to raise global awareness of PH, they will tackle the ultimate challenge: climbing Mount Kilimanjaro, Africa's highest mountain! Dr. Benza and Jessica from Allegheny General Hospital are not doing this just for those patients they have but for all those PH patients in the PH community -- as is Dr. Franz from the Mayo Clinic.
Western Pennsylvania is hill country, not like Mt. Kilimanjaro but very hilly, and Pittsburgh itself was built on or around hills. They have many stairways to get from one street to another –- a totally different level and very steep -– we’re not talking second story to a home level; we are talking up the side of a hill level. It is also Steelers Country and if you are into football you will know what that means. Pittsburgh is also known as the City of Champions - this past year the Steelers won the Super Bowl and the Penguins won the Stanley Cup. Woo Hoo!
Now for the Unity Walk, we were to meet in the Sandusky Waiting room where Michele, nurse specialist for PH, took us to the eighth-floor PH research area. Because we’re in Western Pennsylvania during the month of January, our flier advertising the walk stated, “weather permitting.” Some days in January can be balmy, which would be just above freezing; this was not one of those days. It was 8 degrees when we left home with a wind chill of -2. THAT’S COLD! The Weather Channel predicted snow flurries in the surrounding area, so I was not expecting the usual turnout, nor even as many of those who had signed up.
We went to the conference room and in the center of the table was a cupcake Mt. Kilimanjaro –- really cute and very tasty. At one end was a mountainous stack of lunch boxes for our post-walk luncheon; the other end had backpacks with a water bottle, stress ball and an exercise stretch band. We were set and ready. On the white board was a hand-drawn Mt. Kilimanjaro with stick people of Dr. Benza, Dr. Frantz and Jessica with “Mt. Kilimanjaro or Bust” written in the mountain.
Jessica Lazar, a physician assistant at Allegheny General, is going on this infamous climb (be sure to read her blog posts) and she told us of her training involving climbing those stairs in the ‘Burgh, climbing the stairs at the hospital. She mentioned that when Dr. Benza makes his rounds along with the fellows, they use the stairs to the 16th floor. Jessica smiled when she told us that some of those fellows are losing weight while being in training with Dr. Benza.
She explained the equipment required: special shoes/boots, wool as opposed to cotton, layers of clothing (but not too much, or you will sweat, and that could freeze). The material required for climbing has to be something that will keep the moisture away from your body, not keep it close to you –- think of a bath towel and how that holds moisture. “Cotton kills” is a term used by climbers.
Through these past months of training Jessica has climbed “hills” around Pittsburgh, climbed those steps mentioned earlier and she learned to adjust her clothing as the weather went from fall to winter as Mt. Kilimanjaro will go from the jungle heat to an arctic freeze. She showed us a little lamp, like a miner’s lamp (remember, we’re in coal country, too), and this one had stretchy string to put around her head, as even one with a leather strap or a “hard hat” type would add extra weight. The climbers weigh their clothing and what they will be carrying in their backpacks. The weight they carry when they start in the morning may only be a few pounds, but by evening it will feel like hundreds of pounds. So every ounce counts. That reminds me of my Flolan pouch; it may only weigh 4 or 5 pounds, but some days it feels more like 20 pounds -- and, again, that is a reason these clinicians are doing this: to feel what we are going through to raise funds for research and awareness of this dastardly disease. Jessica’s emotional reason why she is doing this put a lump in my throat.
She told us of the packers or guides that are required to trek along with our climbers. They will carry the tents, major food and other heavy equipment. When at the lower levels of the mountain, you are not allowed to go off alone, as those hazardous animals are on the loose –- lions and leopards and snakes, oh my. At a higher level above the jungle, they are still some critters to be aware of. Above the tree line, no hazardous critters –- just bitter cold.
Each day, a climb will consist of approximately eight hours up. They reach a level and go off to the side to adjust to the altitude change, and Jessica told us it’s like taking two steps up, one step down and a side step along the way. I wonder if they’ll make a Mt. Kilimanjaro two step dance ;o). The packers set up the tents and prepare their evening meal. The climbers will carry enough food and water for a day’s use, along with several just-in-case items.
This climb can create altitude sickness and it is recommended they drink 4-5 liters of water per day, and eat lots of food for energy. A common symptom of altitude sickness is loss of appetite, nausea, and vomiting… and if they don't eat and drink, the altitude sickness gets worse. She told us how they may not realize this symptom and how they have to rely on each other when and if they get affected to do what they can to overcome this illness or it’s a quick trip back down the mountain. Jessica has given up caffeine now, as stimulants can create an issue. She said it’s better to have withdrawal symptoms now then when climbing up that mountain. Jessica plans on taking her oxygen sats when she reaches the summit, and one of our members volunteered a pulse ox (light weight) for the climb. The climbers also hope to be able to communicate with PHA on a regular basis while climbing.
The last climb to reach the summit will take approximately 15 hours, and this will be done at night as the bright sunlight will be too overwhelming for a day climb. The climb down will take one or two days as opposed to the seven days it takes to reach the summit. Climbing down is a reversed strain on those leg muscles and the knees, so caution is still in vogue. We thanked Jessica for sharing her thoughts with us and let her know how much we appreciated what she and the doctors are doing for all of us.
Michele, Carrie and Lynn (who work at AGH) then introduced us to staff who work in the research department of the Gerald McGinnis Cardiovascular Institute at Allegheny General Hospital, and we gathered ourselves up for our Unity Walk -– a tour of the PH research department. Our first stop was the Bio Engineering Lab where Dennis Trumble, a bioengineer, showed us a heart made to scale and pointed out the pulmonary arteries, the aorta and other tubes either going to or from the heart. He also showed us an oversized heart and explained why it could be in that condition. Dennis then showed us a pacemaker, a hydraulic pump of sorts and another medical device created at AGH that he is working on –- all these to help the heart and lungs.
We then went on to Dr. Benza’s storage room, where he has DNA samples stored in several freezers for use in PH research. The room is specially equipped to handle the heat from the freezers, so the room is basically at an even temperature.
Then across hall to the Gene Therapy Lab. Dr. Michael Passineau showed us various testings in progress and equipment that is used and how they will benefit us as patients or retard the progression of PH. There is a new not-ready-for-trial-as-yet med and the catheter used on the rats is about the size of human hair. When viewed through the microscope, it looks about the size of a thin straw. Some of us were able to take a peek. It truly is amazing what is going on in their research department. The rats are doing well.
Jessica then took us down the hallway with a mural her son’s daycare classmates made: a construction paper giraffe and a lion, whose mane is made from their hand prints. “They done good."
Now back to the conference room for lunch and the raffle drawings. We were told that the baskets were brought to the cafeteria each day with special totes in front to know which basket you want to win and where to place your ticket. There were a dozen or more baskets to choose from: restaurants, wine and cheese, books, coffee, attend a sports game and a doggie basket (the basket itself was a doggie bed; it also had a food dish and various other goodies a dog would enjoy). :o) several others as well. AGH collected $1,300 from the raffle drawing.
The Pittsburgh goal for the Unity Walk was $2,000 and each support group across the country was asked to try to raise $1,000. Actelion is sponsoring a dollar-for-dollar match of up to $50,000 in donations. The climbers’ goal is to raise $100,000 for PHA’s PH Research Programs and patient serving programs; we are very close to reaching that goal and many of the support groups haven’t even had their Unity Walk as of yet.
My agenda was very brief but I did ask all to call or write their legislators often to either co-sponsor HR 1030 or S2803. I shared information about PHA’s upcoming International Conference in California in June, and for folks to get their flu shot.
I want to thank United Therapeutics for providing our lunch for the day, also Gilead Sciences for providing our backpack specials, and especially the nurses and staff at Allegheny General Hospital for all the help they provided prior to and during this walk. Those members who came submitted the contributions they collected, several of the pharmaceutical representatives who participated added their donations and our total for the day was $3,250 –- with donations still coming in!

Read their blog: http://pathtoacure.blogspot.com/

Awesome event and such a very special day.

Remember to smile ~ it's contagious.

Veterans Day - Lest we forget

2009-11-11T08:44:00.008-05:00

A thank you to all soldiers for your service and your sacrifice -- whether it be behind a desk or a rifle -- you will be always remembered for what you have done so that we may enjoy our freedom.

War Veterans
The 11th Hour: The Date Behind Veterans Day
by Claudine Zap

While most know that Veterans Day honors those who have served in the military, the meaning behind its exact date (November 11) may not be so familiar. Here's the backstory:

Back in 1918, in the 11th hour of the 11th day of the 11th month, a stop to hostilities was declared, ending World War I. An armistice to cease the fighting on the Western Front was signed by the Allied powers and Germany.

President Woodrow Wilson immediately proclaimed the day "Armistice Day," kicking off the annual commemoration on November 11. But over the years, with veterans returning from World War II and the Korean War, Armistice Day became Veterans Day — a day reserved to honor veterans returning from all wars. But 11/11 still represented the end of the Great War in the public's mind, and the date stuck.

In 1921, unidentified dead from the war were buried in Arlington National Cemetery in Washington, D.C., Westminster Abbey in London, and the Arc de Triomphe in Paris. The tradition to honor those killed in the war but never identified continues every year in the U.S. The ceremony is held at 11 a.m. at the Tomb of the Unknown Soldier at Arlington National Cemetery.

Congress designated Veterans Day as a legal holiday in 1938, and since then, most Americans have come to know it as a day for store sales and parades. Yahoo! Searches on the holiday have already surged on the Web. People want to know "veterans day history," "veterans day closings," veterans day sales," and "veterans day free meals."

About Pulmonary Hypertension

2009-11-03T09:54:00.001-05:00

Pulmonary hypertension is a rare lung disorder in which the arteries that carry blood from the heart to the lungs become narrowed, making it difficult for blood to flow through the vessels. As a result, the blood pressure in these arteries -- called pulmonary arteries -- rises far above normal levels. This abnormally high pressure strains the right ventricle of the heart, causing it to expand in size. Overworked and enlarged, the right ventricle gradually becomes weaker and loses its ability to pump enough blood to the lungs. This could lead to the development of right heart failure.
When pulmonary hypertension occurs in the absence of a known cause, it is referred to as idiopathic pulmonary arterial hypertension (IPAH). This term should not be construed to mean that because it has a single name it is a single disease. There are likely many unknown causes of IPAH. IPAH is extremely rare, occurring in about two persons per million.
Secondary pulmonary hypertension means the cause is known. A common cause of secondary PH are the breathing disorders emphysema and bronchitis. Other less frequent causes are the inflammatory or collagen vascular diseases such as scleroderma, CREST syndrome or systemic lupus erythematosus (SLE), the list goes on.
Pulmonary hypertension occurs in individuals of all ages, races, and ethnic backgrounds although it is much more common in young adults and is approximately twice as common in women as in men.

Merle - OHPA

Blood Clot in Lung can cause Pulmonary Hypertension

2009-11-02T10:15:00.007-05:00

An unexpectedly large number of patients who survive a blood clot in the lungs develop a potentially dangerous high blood pressure in the pulmonary artery researchers report. Finding show that pulmonary hypertension occurs far more frequently than expected.

Pulmonary embolism, a blockage of an artery in the lungs, strikes an estimated 600,000 Americans every year and causes approximately 60,000 deaths. It is, in fact, one of the leading causes of sudden death in this country.

Pulmonary hypertension, on the other hand, is a condition that can strain the heart, which must work harder to push blood through the lungs, but one that is often ignored because it causes few or no symptoms in many patients.

It has been thought that only a few of those who survive a pulmonary embolism go on to develop pulmonary hypertension -- one in 1,000 at most. But the incidence amount of those patients studied (223) was much higher says a report in an issue of the New England Journal of Medicine.

At six months, 1 percent of patients had pulmonary hypertension. That increased to 3.1 percent after one year and 3.8 percent after two years. Hypertension generally developse slowly after a pulmonary embolism. There is "a honeymoon period" of a few months, and then the incidence begins to increase.

The condition can be caused by lung disease, by failure of the left side of the heart or by a congenital heart disorder such as a faulty valve. In a small number of cases, usually involving young women, there is no apparent cause.

These often are difficult to diagnose and have treatments that are quite different. For example, if the cause is a bad heart valve, surgery is done to replace the valve. If the cause is lung disease, treatment is aimed at correcting the lung condition.

When the cause is a plmonary embolism, an effective treatment is endarterectomy, surgery to removed the clots that are blocking the artery. The technique was developed at the University of California, San Diego, and is now widely used.

Often, the only warning sign of pulmonary hypertension is shortness of breath. And how often is that ignored

Opha

In my humble opinion an epiphany of sorts

2009-10-31T16:59:00.006-04:00

This is from a friend -- I thought it worth reading.

Occasionally, after specific things have been rattling around in our heads for awhile, there may be a fortunate moment when at some connections are made. I got lucky, I hope.

As I was contemplating and yes, that's as far as it got, repairing a closet door, it occurred to me that a recent PH Specialist visit which resulted in an outcome similar to that experienced 14 times by a PH patient described elsewhere, may not have been the disaster that it first seemed. Although the physician's impression was incorrect, ("I am not sure you have PH"), I most certainly recognize that he is an exceptional doctor. He is widely recognized as being an expert in certain PH areas and was a very impressive individual. Besides, I am not qualified to evaluate his medical skills, and will not attempt to do so. My disagreement is with the scope of the evaluation. Pulmonary function test and the six-minute walks are standardized screening and even confirmation features of nearly every pulmonary hypertension assessment conducted in the United States and elsewhere. They formed the basis for his opinion.

While statistically sound, these instruments do not address the many different types of PH, resulting in all too common diagnostic delays, disease progression and needless suffering. Clinical indications which can be quantified exist but are not usually detected during standard evaluations, such as presenting problems which are intermittent in terms of symptom intensity, as in sporadic pulmonary hypertension. Chronic thrombeombolic PH, that's where the spinner stopped on my wheel, and does not necessarily respond to standard evaluation as would idiopathic PH, and so on... I cannot state unequivocally how many different type/classes of PH have been identified, but my last count was between 8 and 10, which is quite likely an underestimate.

A subjective issue about which I have received multiple comments from other PH patients involves the use of outward personal appearance as a yardstick for overall health status. At least initially. Many of the replies to "my, you look great today!" are quite humorous and very creative. And ironically, most folks, regardless of their illness, do not wish to show up at their doc for help only to hear about how wonderful they appear! PH in particular is insidious in its tendency to hide beneath a superficial facade of decent health.

Diagnostically, right heart catherization is the gold standard, as we all know. Yet even it can be fickle. Today's advanced diagnostic imaging is imperfect. Indispensable of course, but imperfect nonetheless. During my all too common sleepless PH nights, I have reviewed volumes of nationally respected research generated by quality physicians at well-respected institutions, and there is a trend developing toward a more comprehensive clinical assessment. Including not only quantifiable information, the scope is expanding to include what are considered subjective measures, such a quality of life, extent of patient support system and daily functioning, ability to accomplish goals, as well as sleep quality and pain management.

After all, if we could all participate in a six-minute walk and the other function tests once a week for a year, if PH existed, it would be hunted down eventually. The alternative is more inclusive evaluation, drawing from the leading work in multiple areas relative to PH as a class of diseases. In my particular case, employing additional heart catherizations as a diagnostic instrument has been avoided for three years due to "risky" primary and secondary diseases. Consequently, the aforementioned recent, expectation-laden journey to a well-respected teaching hospital, famous for it's experts, resulted in what was perceived by some (and oh, yes I was a member at first) as basically the end of the story. This rendering, these thoughts, helped me to resolve any doubts and get on with the daily struggle to deal effectively with PH.

Don't get me wrong; while I chewed this dilemma every which way and back again, I wasn't having one of those rare 'good days', as I did during the PH assessment. I recall thinking during a pulmonary function test; I know I'm going to hit a home run on this thing, because expiration is not my major challenge. But during a 24/7 02, and too much TV day, when fatigue steam rolls me, I would have fumbled getting any inspiration worth reporting. I would have fallen asleep and missed the game. Excepting emergencies, timing an evaluation for a highly symptomatic day appears to be a poor approach; at least for me.

Which brings me back to that finely considered repair for my closet door, when the realization that the presence of other, perhaps more credible evidence was laying out on my coffee table. I raced, hobbled, banged my 02 bag against myself, but did reach my objective. The haste was necessary lest I forget why I went looking in the first place (oh the PH moments!). My prey was the fall 2009 Issue of the Pulmonary Hypertension Association Newsletter, "Pathlight". Slightly off-task but worth mentioning. I read elsewhere in a PHA publication: "When you can't breathe, nothing else matters." Absolutely no way I can conceive to improve on that sentiment.

Two articles I had read seemed not only to be relative to my recent experience, but to the slow but certain transition to a system of PH diagnostic techniques which reaches beyond intrinsically institutional factors. The first, from "Phenomenal Lives", written by a PH patient who was frustrated by multiple misdiagnoses, vividly described the process of delay after delay before diagnosis and treatment were attained. In this case, 14 years transpired before a diagnosis was attained. Her spirit undiminished, this incredibly resilient PH patient is now a stout advocate for PH education, awareness and research. The second article, the one that pulled me in like a hungry rainbow trout, was under "Meet the Doctor", and composed by PHA Medical Education Program Associate Christa Donald and Kaitlyn Benneville, Former PHA Web Services Intern. It features Dr. Stephen Mathai of Johns Hopkins Hospital, and after reading about his approach and objectives and hopes, the establishment of a more comprehensive PH diagnostic evaluation system seems like just a matter of time. Time, however, is and will remain unconcerned and unhelpful for most PH patients. Only continued research and determination will unlock the keys to both diagnosing and treating this terrible disease. "Dr. Mathai and his colleagues are attempting to improve the outcome for these patients. He is also interested in developing new tools to measure progress beyond the six-minute walk and lung function tests. Dr. Mathai believes scientific measures should also reflect a patients quality of life, looking at such areas as depression and anxiety levels, sleep quality and the like".

Whatever the cause, I am very grateful my thoughts collided where they did this evening. While my closet door remains neglected, I have a small measure of peace of mind that might convey more strength on a rough day, or two consecutive hours of restorative sleep. Hope is both a very fragile burden and a headstrong, immovable force for change. It is where the inherent discrepancies meet that I believe true progress occurs. And it seems to be happening, thanks to the members of organizations like the Pulmonary Hypertension Association, American Heart and Lung Associations, Dr. Mathai, countless researchers, and all the undeniably tough, determined PH patients who do not give up, and our physicians who never settle, never stop learning.

So, that likely over-describes my little epiphany, It was a blessing to finally gain more perspective, as PH can consume so much thought and energy. However, I could not drag myself off to some uncomfortable sleeping position and likely visions of the miserable closet door until I provided heartfelt gratitude for those PH patient fighters. An unsung hero. I met Merle Reeseman through the PHA Help Line and we have been friends ever since. And what a Blessing, indeed. She inspires many and asks for absolutely nothing in return. Her encouragement allows me to consider hope as something other than deferred despair. Also, I would be remiss not to acknowledge my Critical Care/Pulmonary Medicine doc, who has been effectively treating my PH for about six years. He also helped to save my life during a massive pulmonary embolism in 2006. Humble and dedicated to his patients, this outstanding physician has established such an impressive record that folks come from all over the U.S. to study under him. My PCP is a compassionate young woman who is not intimidated by dealing with tough quality of life issues and pain management. I consider myself both blessed and very lucky to be involved with these physicians.

Following my appointment with the PH specialist, I was admittedly quite discouraged. And a good month of learning and introspection and conversations were required before my tiny epiphany occurred. Perhaps now I'll address the home repair issues, but I anticipate continuing to try to improve my understanding of PH whenever and wherever possible. Finally, (yep, I'm nearly finished!), I would like to reach out to the previously described, constantly misdiagnosed PH patient, who indicated in her article that she often wondered and struggled with the idea that God had given her PH and all its' many demons, and it was seemingly too much to bear. May I just suggest, without imposing my personal beliefs, that perhaps God was not responsible for the PH, but for the strength and determination which have enabled her to obtain a proper diagnosis and deal with the debilitating disease.

And the battle continues....

Rod ~ PH Patient

Symbols of Patriots

2009-06-02T10:47:00.006-04:00

The use of the eastern diamondback rattlesnake as a symbol of the American colonies can be traced back to the publications of Benjamin Franklin. In 1751, he made the first reference to the rattlesnake in a satirical commentary published in his Pennsylvania Gazette. It had been the policy of Britain to send convicted criminals to America, and Franklin suggested that they thank the British by sending rattlesnakes to England

In 1754, during the French and Indian War, Franklin published his famous woodcut of a snake cut into eight sections. It represented the colonies, with New England joined together as the head and South Carolina as the tail, following their order along the coast. Under the snake was the message "join or die". This was the first political cartoon published in an American newspaper.

As the American Revolution grew closer, the snake began to see more use as a symbol of the colonies. In 1774, Paul Revere added it to the title of his paper, The Massachusetts Spy, as a snake joined to fight a British dragon. In December 1775, Benjamin Franklin published an essay in the Pennsylvania Journal under the pseudonym American Guesser in which he suggested that the rattlesnake was a good symbol for the American spirit:

I recollected that her eye excelled in brightness, that of any other animal, and that she has no eye-lids—She may therefore be esteemed an emblem of vigilance.—She never begins an attack, nor, when once engaged, ever surrenders: She is therefore an emblem of magnanimity and true courage.—As if anxious to prevent all pretensions of quarreling with her, the weapons with which nature has furnished her, she conceals in the roof of her mouth, so that, to those who are unacquainted with her, she appears to be a most defenseless animal; and even when those weapons are shewn and extended for her defense, they appear weak and contemptible; but their wounds however small, are decisive and fatal:—Conscious of this, she never wounds till she has generously given notice, even to her enemy, and cautioned him against the danger of treading on her.—Was I wrong, Sir, in thinking this a strong picture of the temper and conduct of America? B.F.
Found this interesting. Howz come we don't write like this anymore...
Smile -- it's contagious

Life - Liberty - Freedom

2009-05-23T21:11:00.013-04:00

You've heard of high blood pressure (hypertension), a common condition that affects the way your blood flows through the arteries in your body from the left side of your heart. A less common type of high blood pressure, called pulmonary hypertension, affects only the arteries in the lungs and the right side of your heart.

Pulmonary hypertension begins when tiny arteries in your lungs, called pulmonary arteries and capillaries, become narrowed, blocked or destroyed. This makes it harder for blood to flow through your lungs, which raises pressure within the pulmonary arteries. As the pressure builds, your heart's lower right chamber (right ventricle) must work harder to pump blood through your lungs, eventually causing your heart muscle to weaken and sometimes fail completely.

As many of you know I volunteer for the PHA Help Line -- yesterday I received a call from a soldier and I thought of the above.

He wants to decorate his 1999 Malibu in memory of his wife who died 4 years ago after struggling for 5 years with PAH. He called to ask for permission to use the PHA logo along with the website, the flame of hope and the purple ribbon would go from tip to stern. He also wants to put PATHLIGHT on the side overlapping the doors. It would be a PHA logo in motion.

He told me how he put on over 300K miles on this car -- his wife's car -- driving her to and from appointments first to Duke when they lived in NC, then when they moved to KY to the Univ of KY. We talked of treatments the care involved and the grief that can follow.

Since her death he has continued to donate $100 per month to PHA in her memory. He is now stationed in Afghanistan and as we spoke I could hear the roar of the jets as they flew overhead. When he returns from Afghanistan this December, he will start decorating the Malibu and raise awareness about pulmonary arterial hypertension.

He also mentioned how he has educated the medical staff there about this disease to the point that one of the nurses who was going for an additional degree did her paper on PAH... He is such an advocate for all of us in the PH Community. He made me proud I had the opportunity to speak with him.

Let us truly appreciate, especially this weekend ~ Memorial Day Weekend, how our soldiers go above and beyond the call of duty not only to protect us but also to be such advocates for our cause.

Let's remember to pray for those in uniform. In memory of those who have died so that we may live the life to which we are accustomed to living and in honor of those who still defend those rights and our liberties -- both who have paved the way for our freedom.

Every day should be a day of rememberance to those in uniform -- A Memorial Day of sorts but more.

Merle - Now is a time to SMILE -- to show our thanks -- and remember it's contagious

Since December 2000 in an effort to help Americans

remember the true meaning of Memorial Day the

"National Moment of Remembrance" asks that at

3 p.m. local time ALL Americans pause for moment

of silence in remembrance and respect.

HAPPY MOTHER'S DAY

2009-05-14T07:50:00.004-04:00

What is a Mother -- a Mom, a Mommy, a Mum or to some it is Mother...

She's the one who kisses that boo boo and makes it feel better, the one who listens to what you have to say -- and sometimes does not agree with what it is you are saying but still listen. The one who gives out hugs and expects to get many more back.

Mom's are among the ones who help you learn lessons of life -- like baking cookies, some can even teach you how to sew -- some can not *;* ~ how to cook a meal, wash clothes, many of the "daily tasks" that seem so behind the scenes but are there. Many Moms do this but again, many can not. They teach responsibility.

Lessons on how to get along with others and how to make friends -- how to settle an argument. There are volumns to be learned and in return Moms learn from their children as well. They can teach you how to play sports -- how to dance... their circle of knowledge is vast; their teaching ability seems unlimited.

They learn and share their compassion, to feel anxious when their children arrive home later than expected; to feel grief when a child is lost to a greater being or dispair when a child is lost to an unknown disaster of life such as drugs or alcohol ~ when that road of life goes astray.

Mom's, Mother's, Mommies show love, caring, compassion and responsibility -- it does not always show from the viewpoint of a child but trust me when I say they do love their children no matter what.

A Mom

The Ceiling -- Part Three

2009-05-05T10:41:00.003-04:00

The disrepair was about to begin, or repair or whatever it should be called... Tom had taken down all the old tiles and the next day he and Byran came over to help put up those runners and put the new ones in. Things were moving along smoothly and that should have been a hint as to what was about to happen. They figured about a 2 hour job at the most and I would have a new ceiling... another hint.

Bryan -- who recently became engaged to our daughter Tammy -- wanted things to be right. His heart is in the right place... that corner where the plumbing was repaired for the upstairs was just below the level of the tile. He said if we pull up that pipe with an old wire coat hanger, it should work -- another hint of doom and disaster. The plumbing hung down about an inch below the tile. I said you could cut an area out, it wouldn't really show....I was thinking of an easy way. It was decided to pull up that plumbing and do it right. Now the chore was finding an old wire coat hanger and that believe it or not was a chore. We finally found one in an upstairs closet. Pliers, screws, the operation was now underway. Slowly the plumbing was brought up to where it should be BUT WAIT... one little side tract of the plumbing was still too low. So a trip to the hardware store was in order. A bracket or brace was needed over here, might have to cut an inch up on this pipe there, then connect it back up again....

They returned from the hardware store, cut a little here, connected a piece there and viola it looked great and should be perfect... So Tom goes upstairs and runs the water in the tub. Bryan and I are downstairs with our fingers crossed and a little drip is spotted. So back to the hardware store to buy something for the "joints", not sure what was wrong. I think it might have been a larger plier to tighten up a connection but I'm not sure. A slop of this here, wipe at little there, tighten this here make sure that's ok there. Tom goes upstairs again and runs the water -- NO LEAK. Whoo Hoo. Then all of a sudden we hear this CRACK, Bryan and I look at each other -- no leak... then all of a sudden there is water running down the side of the wall and he yells to Tom to shut the water off.

Well wouldn't you know, the Y connection between the commode and the tub, the sewer line, snapped. OH NO BUCKWHEAT. So back to the hardware store, need pipe for the size of the sewer line with the proper things to make a conneciton. Some of this, some of that -- good thing they bought that special glue and those pliers.... Finally they finished, Tom goes up stairs once again to run the water -- NO LEAKS... DA DAH Time now to cut that last piece of tile to fit into that corner...

So what should have been a 2 hour job turned into a 2 day job but it sure does look beautiful.... Now for the kitchen wall...

Smile -- it's contagious and it sure helps when doing something like a cieling :o)

The Ceiling -- Part Two

2009-04-28T11:44:00.004-04:00

If you note the date on the pictures of my ceiling you will notice it was a couple of weeks ago -- yes Jen a couple of weeks ago *;*

I had sooooo much trouble with the pictures I never posted it -- I also had another picture with the "guys" working -- don't know what happened but I lost the picture and what I posted along with them.. Worked on it two hours this morning, got the 3 pictures the way I wanted and lost my epistle.... then lost the other picture so I decided to leave well enough alone and write this allllll by itself. So here goes.

Since I moved downstairs, about 16 months ago, the ceiling has been in disrepair -- isn't that just a wonderful word... disrepair -- needs fixin is what it is all about. Every now and again I would mention about the ceiling... every now an again I would get a smile -- one of those smiles that mean when the right time comes it will be fixed/repaired. Tom decided he wanted to do the whole ceiling not just those that were stained or missing. Just in case there was a color difference -- made sense to me.... soooooo.... patience is a virtue....!!!! Six years ago the upstairs bathroom sprung a leak and soooo the easy way was to do that repair was from the first floor. New plumbing was put in -- new sink, commode, I kept the old claw foot castiron tub and added one of "those" shower heads with the loop tubing that you hang your shower curtain and shower head from... anyway... the upstairs bathroom was fixed. The ceiling (in my diningroom) was left in disrepair -- I think I'm beginning to like that word. *;*

Well, a few weeks ago, proably a month or more now, we took the truck, went to the big city and bought some ceiling tiles and those runners that they lay on... now that's a start. The future of having a new ceiling was really in view. Whoo Hoo.

I had mentioned to my pastor on one of his visits (it is embarassing to have folks visit and have them think the sky is gonna fall in on them) that I had hoped it would be repaired by Mother's Day -- of course this was last year when I said that :o).... When Mother's Day came and went and the pastor came again -- he said "Well, did he mention which Mother's Day".... I think he has a typical male sense of humor. I'm sure I responded with a pleasant but smirky smile. :o\

My friend who had moved to Florida a number of years ago was up for a visit. Our plan was to go out to lunch so she stopped to get me. I met her outside... we had a wonderful lunch, caught up on not seeing each other (we email and talk on the phone often). We stopped at a couple of stores on the way back. She helped me bring in the "stuff" from the stores so my intent was to show her the apartment and have a cup of tea or coffee. Well, we walked in the door and low and behold I saw some tiles on the floor. Whoo Hoo, Tom had started to take them down. I had mentioned to my friend at lunch about the ceiling but never expected the work to start that day. My standing joke is == which Mother's Day will it be fixed by. She totally understood my frustration.

To be continued....

Smile - it's contagious

The Ceiling.... Whoo Hoo

2009-04-14T18:13:00.020-04:00

TV and Pulmonary Hypertension

2009-04-02T18:18:00.008-04:00

Well hold me back. Yesterday, April Fools Day I was asked to be part of an "Awareness" program for PH. --> that's me doing a cartwheel.

I should back up some. We have an upcoming PH Support Group meeting and one of the Pharma Reps asked if they could sponsor a program about cooking and having a local celebrity do the program -- no salt and using herbs and spices. Sounded super good to me so it was looked into and we were finally able to make it a go.

I was excited about the presentation or demonstration for our Support Group and I was asked if I could come and meet Rania, our specialty cook; so Tom and I went for a ride to Pittsburgh. We met, discussed the type of foods that would be possible, suggestions, comments the usual when you are trying to make things work just right. Then Rania asked about Pulmonary Hypertension and it's causes and such. I started to tell her "my story" and she said you need to go on television. She does a weekly cooking program on KDKA a local TV station in Pittsburgh. Well, the wheels get rolling on that one. I am anxious, I am excited, I am emailing back and forth information about pulmonary hypertension, its causes, treatments and how we (those in the PH community) are anxious for a cure and the need for more awareness. I'm emailing to Rania, the producer for the proram show and just sending anything and everything I can think of. Trust me when I say I have a lot of info in "MY DOCS"

I was so excited the night before I didn't sleep well, I think I was afraid of oversleeping as we needed to be there by 8:15; which meant we had to drive to Pittsburgh during rush hour traffic. Now according to map search it's just over 50 miles to where we were going -- which is right in downtown Pittsburgh and the guesstimate to get there was approximately 55 minutes... Ya right, do wish these computers had some common sense about traffic... We planned to leave by 6:30 and we left by 6:35 not too bad considering all I have to take with me.

I had notes -- I contacted PHA to let them know the exciting news, Katie wrote back and sent me some helpful hints as I tend to overwrite when I want to say something -- did any of you out there ever notice that???? Anyway, I had it down pretty good, I contacted both of the PH Centers (AGH & UPMC) in Pittsburgh asked them for some specific info -- again I had a lot but hey I was going on TV. I wanted to have it right. They each sent me some info and I was good to go.

I had the symptoms of PH, the possible causes -- secondary pulmonary hypertension, I had the new PH bill HR 1030 - The Tom Lantos Pulmonary Hypertension Research and Awareness Bill of 2009. I brought a copy with me, I had a copy of the letter to mail to your Congressperson, I brought my camera. For me I had my back up medicine, my mixed medicine, my back up pump, my back up ice packs, my back up oxygen; and all those other needed supplies just in case. I was good to go.

We arrived on time, we were shown to the "green room" which isn't even green and waited our turn. BJ and Rebeca arrived we were then shown into the studio -- another whole different story -- and wired up. Just what I need, another wire *;*

We were told we would be second on the agenda.. a Harlem Globetrotter was to be first. Then there was a call, he was stuck in traffic and we were on. Nothing like being prepared... they must anticipate those situations as we were ready. The producer and staff were so gracious and curtious to us I was truly pleased. The reporter, Keith, was a cool and very professional guy. I do believe the presentation went well. The program not only include our awareness speil but also the cooking demonstration and a segment on no salt vs herbs and spices. All for Pulmonary Hypertension.

When you get to the site, look at the little video on the right and let it scroll until you see a hot pink jacket -- that will be me. If a newer PTL is on, go to the video library and look at April 1st -- it will be there and that segment is titled "Living with Pulmonary Hypertension. KDKA also put a link to the Pittsburgh PH Support Group. I hope you enjoy the presentation as much as I enjoyed being a part of it -- so here it is: Pittsburgh Today Live It has moved and you will need to go to the April 1st previous video library . This is the direct link to "Living with Pulmonary Hypertension".

Don't forget to look at Rania's cooking segment and Leslie's info on salt and herbs -- same Pittsburgh Today Live for April 1st - they both did a special about PH and cooking.

Remember to smile -- it's contagious

Merle

Hot Diggity

2009-03-24T16:15:00.004-04:00

I GOT MY CAR BACK. This may not sound like a big deal BUT IT IS! I have been without my car for 2 full weeks. Now mind you I don't go out much but when I do go out, I would rather get to places with my "automobile" than walk... and if it came to walking well I probably just wouldn't go. Tom went and got it for me Monday -- the 3rd Monday it was at the geerage.

This morning I just had to give it a try -- word was they didn't even know how it started let alone moved. Went and had my blood work done but it got me out the door and into my "automobile". It moved out pretty good and now that I think about how it rode, I'm wondering if my car had a case of pulmonary hypertension!!!

Before it was fixed when I drove along, it would slow down when I went up a hill and gave it some gas -- does this sound familiar? If I were on a level it would go ok. If I had one of those "situations" I would pull off to the side of the road, shut it off, count to 10 and start it up again and it would be fine. Well, that one doesn't quite work when you have PH but I think you get the drift. It did have a transplant -- new fuel pump and gas tank.....

It now has more zip than I remember it having for quite some time. Guess it really needed to see the "automobile" doctor. *;*

Remember to SMILE -- it's contagious

Merle

For better or worse ~ from better to worse

2009-03-12T17:36:00.002-04:00

Some of you know that last Monday Tom brought my car to the dealer -- 8 a.m. to be exact. He called me at about 8:10 saying it would be a while for them to look at it and for me to come get him. He had taken my car the night before, left the pick-up for me and the plan was put into place. The Aurora is an automatic and the pick-up is a stick-shift. Now one car prior to the Aurora was also an automatic but before that all the vehicles I owned were stick shifts... even had a little sports car once. When you are in business for yourself you need the right "tools", one being a nice car.
Anyway, I get into the truck which in itself was a challenge because it is a TRUCK and off I go to the next town over which is about 10 miles away. Tom had backed the pick-up in so all I had to do was go forward.... *;* does this sound like I am leading up to something :o) I haven't driven a stick shift in about 6 years but I guess it's like that saying about riding a bike... once you learn you don't forget how to do it. I chugged a little at first but finally got that smooth motorin action I needed... had 5 lights to go through and wouldn't you know every one of them was red when I got to them. I was doing pretty good, I got Tom, we came back to my place. We waited all day and finally just before 5 p.m. the car dealer -- service department -- called to say they really didn't get a chance to look at it !!!!! But they had taken it for a drive and there is a problem.
Tuesday comes and they call and say it needs a new fuel pump and that the computer thingie they put it on said a lot of other things were showing up. Now John -- service department -- is thinking once the fuel pump is put in, it will take care of most if not all of those other glitches but of course won't guarantee that. The cost for the fuel pump and labor will be about about $800. Tom called a couple of places and got a better price but not by much and he calls John who then tells him if they use another fuel pump they cannot guarantee the part or the labor even if they do the labor. So we decide with the kind of luck I have it wouldn't be worth the few bucks saved. Then I'm thinking where am I gonna get that kind of money -- that's more than I get a month plus another 1/3 again... Tom is all upset about the money and I'm not sure why because he's not allowed to help me out financially and he wouldn't have that much anyway. I've learned not to worry any more about money -- I can only do so much and worrying isn't going to help with the condition I'm in. We gave the o.k. and they were to order a fuel pump -- it will take a day to get there.
Wednesday comes and so does the fuel pump. We get a call -- ut oh -- while they are working on taking out the old fuel pump, guess what!!!! The "neck" connection which is from the gas tank is all rusted out and falls apart so now it needs a new gas tank.... AND GUESS WHAT ELSE... the car, my beautiful Aurora, is 12 years old and they don't make them, the gas tank, like that any more... soooo they start to call all around to see if they can find one. THINGS ARE GOING FROM BAD TO WORSE and I'm thinking I should pull my hair out, I have enough hair and it might make me feel better. Nah, that won't make me feel better and besides, it will hurt, no mights about that one.
Tom calls me when he gets home and I can tell by his voice that something is wrong -- he says guess what :o( I say what and he said when he got home and backed in the garage the brake line broke so there he is out in the country no truck, me in town no car... he is so upset. I'm thinking, well I won't tell you what I'm thinking. I try to calm him down and told him we'll worry about that tomorrow... He calls Tim, our son, who doesn't live that far from him, Tim comes up, looks under the truck and says Dad I think we can fix it. They go to the auto parts store buy a new break line and viola, they fixed it. Tom calls me later and said he was just so worried if something else or anything should happen to me likle needing a ride to the hospital etc... he worries about me sooo much. Although right now I'm doing ok, it seems there are times when something will happen and it's a trip to the Cleveland Clinic -- I have pulmonary hypertension and my specialist is there. It's a life threatening disease and I and anyone else who have it has to be very careful with maintenance of this disease and it has totally changed my life.
Thursday comes and no call. The last estimate is between $1200 and $1400. Now Saturday is my support group meeting just outside Cleveland and no car. John said if it wasn't fixed by tomorrow, Friday, then we could have a loaner for the weekend. Glory be.
Right now I need to take my own advice -- SMILE ~ it's contagious *;*
Merle - OHPA

Advocacy is the extra bag I tote

2009-02-26T11:40:00.004-05:00

A new bill was recently presented in the HOUSE - HR 1030. It is about Pulmonary Hypertension and what this disease can do and now we desperately need to have our Federal Representatives co-sponsor this bill. I have written to several and will continue to write to more until we can get this bill to pass in the HOUSE and move on to the SENATE. This is what I emailed.

Honorable Congressperson (you can copy this and fill in your Representatives name):

As a member of the pulmonary hypertension community, I urge you to co-sponsor H.R. 1030, the Tom Lantos Pulmonary Hypertension Research and Education Act of 2009.

Pulmonary hypertension is a simplified name for a complex health problem--continuous high blood pressure in the pulmonary artery in the lungs, resulting in an enlarged heart which can lose its ability to pump. Many associate PH with common high blood pressure instead of a distinct and grave illness. Someone with high blood pressure can live 30 or 40 more years. Without treatment, 50% of PH patients die within 2.8 years of diagnosis.

Symptoms of pulmonary hypertension may include: Shortness of breath with minimal exertion, chest pain, unusual fatigue, a dry cough, edema, heart palpitations, fainting and dizzy spells. Pulmonary hypertension is described as progressive and fatal.

The sooner a PH patient receives effective treatment, the better their prognosis. Several treatments are available, but patients see an average of three physicians before a fourth makes an accurate diagnosis--often losing a precious year, or more importantly, the deterioration for quality of life.

The Tom Lantos PH Research and Education Act of 2009 Co-sponsorship of H.R. 1030 brings us one step closer to...

preparing more physicians for prompt and effective management of PH
raising public awareness about PH symptoms
increasing the effectiveness of clinical researchers in the PH field

Your co-sponsorship supports improved diagnosis, improved treatment and the search for a cure to this deadly disease. Please help slow the progression of this dastardly disease and extend our quality of life.

Thank you in advance for your valuable support.

You sign your name along with address and phone number. To find out who your Representative is go to: http://www.house.gov/ type in your zip code (may need those additional 4 digits) and send it on.

To those of us with Pulmonary Hypertension this is so very, very important. We almost made it last time -- and every minute counts with the 111th Congress -- politicians can be slow as busy as they get.

Remember to SMILE ~ it's contagious

Merle

HAPPY VALENTINE'S DAY

2009-02-14T12:48:00.005-05:00

It's called sweethearts day -- and many other endearments. We send or give or receive flowers, candy and sweet cards or notes saying how special someone really is in our lives. We write romantic poems or fun and lovey sayings. Something to make this day special and loving.
The history of this day has a few mysteries that follow it, one being: "One legend contends that Valentine was a priest who served during the third century in Rome. When Emperor Claudius II decided that single men made better soldiers than those with wives and families, he outlawed marriage for young men — his crop of potential soldiers. Valentine, realizing the injustice of the decree, defied Claudius and continued to perform marriages for young lovers in secret. When Valentine's actions were discovered, Claudius ordered that he be put to death. While in prison he fell in love with his jailers daughter and sent her notes signed "from your Valentine"..... So there you have it -- or one of them.
Now I didn't get flowers for Valentine's Day but I did get a HUGE box of chocolates. I couldn't find an appropriate picture of a box of chocolates so hence the picture of roses -- another symbol of love and affection. This box of chocolates is too big to fit on my lap now that's a lot of candy. I have limited myself to only 3 pieces of chocolate a day -- I should be done in about a month. It really is big.
Tom and I celebrated Valentine's Day by giving each other lovey dovey cards... he is so good about getting cards and buys just the right one and he also brought over lunch and the chocolates.
Our one daughter invited us for dinner on Sunday (the 15th) -- we had steak and shrimp and fixings and this was also to celebrate our anniversary which is today. I told the kids today is so special because it is our anniversary and it is also a Holiday (President's Day) *;*. Again special cards but no special lunch == I had made a meatloaf Saturday night and we had ml sandwiches... good enough for me and it was for Tom too.
Remember to smile, it's contagious...

Merle

Be Prepared

2009-02-11T08:24:00.006-05:00

This past Sunday was Boy Scout Sunday at the church my daughter and her family attend. Jerod is now a Boy Scout and Nolan is a Webelos or Tiger Cub -- not sure on that one, whichever is the youngest. I was invited to attend this special service to honor scouts and scouting.

With the exception of the Pastor doing prayer requests and upcoming notices, the whole service was conducted by the Scouts. From the Scout Master, Den Mothers, Scout Leaders to the scouts themselves, a brief history of scouting, the religious aspects of scouting; Bible scripture being read and applied to their daily living. It was a very impressive presentation. Of course, anything involving my grandchildren is going to be impressive and emotional for me... *;* Jerod carried the Boy Scout Flag in and also did a "reading", Nolan helped with the collection and had a proud toothless smile when they all sang their songs.

"Scouting has always been about preparing boys for life," says Chief Scout Executive Jere B. Ratcliffe. "Through the Scout Oath and Law, almost 99 million youngsters have learned to help and respect other people, exercise their minds and bodies and know right from wrong." A recent study by Louis Harris & Associates found that three-fourths or more of Boy Scouts believe the program teaches them right from wrong, helps them feel more self-confident and provides them with new skills. I think we all know this part of scouting.... To be prepared.

And being prepared brings me to one of my adventures that has almost become typical for me. Last Friday, Hailey, my granddaughter (cousin to the above boys), was having a concert at school. As mentioned, if I am able I will attend anything I can that involves the grandkids. Well, it happened to be a night that my friend was coming for dinner; she also was looking forward to seeing the kids preform. So when Mary Lou arrived, off we went to the Middle School; next town over and about 10 miles away. I drove. We were about half way there when my car started to act up. It slowed down when I gave it gas and then it would (pardon my English) fart :o) I haven't a clue as to what would cause this. Mary Lou said be sure when I go out again to have someone with me -- JUST IN CASE. Wow, does that sound familiar. (I might get into that later)

The concert, I think a better description would be talent show, was awesome. Those kids; 6th, 7th and 8th graders were amazing. Some sang by themselves, some in groups of 2 or three. Some had amazing voices, some sang off key. Some played the guitar, some drums one even played the piano. Just brought a smile to my face and tears to my eyes -- and it was soooo LOUD. But a great performance by all. I got goose bumps when Hailey and her friend sang their song. They done good. (I also brought my tape recorder and recorded her singing -- and remembered my camera this time)

The trip back home was pretty much ok, my car did act up a bit but not like on the way over. We made it home, cooked dinner and chatted the evening away and I think maybe my car needs to be used more than once or twice a month.

Now for my being prepared. When I go out anywhere I have a routine of sorts. I have my back up medicine -- JUST IN CASE -- I have enough oxygen, plus extra -- JUST IN CASE -- I bring my cell phone -- JUST IN CASE. I am ready for any minor inconvenience -- JUST IN CASE. Well, Sunday on my way to church, I did have my medicine and oxygen but I forgot my cell phone -- left it on the charger. Dang. I was about halfway to the church when I remembered and I thought to myself -- self, people survived many years without cell phones. I will be fine. I get to the interstate area (have to drive past it) when the car started acting up. Now luckily the speed limit isn't too fast at that point because my car was barely moving. I knew I couldn't stop there as I was on the overpass and I was soooo hoping I would make it across the bridge. I did put my flashers on so those behind me would know I wasn't being some senile old person not knowing how to drive *;* and finally found a spot where I could pull over. Well, low and behold who comes pulling up behind me but a State Trooper. Whoo Hoo. He comes to the car and asks if everything is o.k. I explained that my car was acting up and even mentioned the farting -- well how else can you describe what was happening. It put a smile on his face too.... He said he didn't know that much about things like that and asked where I was going. It would be another 3 or 4 miles down the road to the church. He said he had something to do and would drive out that way after to make sure I made it. I made it -- the church service was great -- I made it home with a couple of fartters... Life is good. I'm not going to get into living life and having pulmonary hypertension and all the restrictions and complications that are involved with that. This is long enough -- read some previous postings.... :o)

Now don't forget to SMILE -- it's contagious

Merle

Steeler Fans

2009-01-31T09:43:00.017-05:00

Now I'm not much of a football fan BUT I do know when you live in Steeler Country it is something special to behold and that's not just for the Pittsburgh area. There are Steeler fans all over this country and I'm sure else where in this world. :o)

Now don't get me wrong -- I may not enjoy watching football but I am a Steeler fan. I will root and cheer along with the best of them and it's a thumbs up for a win or a mention of their name. And BTW -- they, the Steelers, need another Super Bowl ring for their other thumb. *;* That would make 6, yes 6 Super Bowl wins.

The first Super Bowl game was played in 1967 in Los Angles and in 1979 the Steelers had their first win. Only 2 other teams besides the Steelers have won 5 Super Bowl Rings. The Steelers really are an awesome group of players and I wish them well. I guess I don't really need to say that as they will WIN... Go Steelers. Over the years the Super Bowl has become the most-watched U.S. television broadcast of the year. Super Bowl parties are a "thing". Team items are a "thing".

One of my friends asked me what the Terrible Crying towel is -- so I took a picture of mine on my sofa.... And this is a little bit about it: In 1996, Myron Cope, a radio broadcaster for the Steelers, created a gimmic. This has become a legend in its time and in 1996 he gave the rights to The Terrible Towel to the Allegheny Valley School in Corapolis, Pennsylvania. The agency provides care for more than 900 people with mental retardation and physical disabilities, including Cope's autistic son. No proceeds went to Myron Cope and trust me when I say, it's a big seller. Just watch a Steeler game and see them being twirled around.

Here we go Steelers, Here we go.... Pittsburgh's goin to the Super Bowl ~ Here we go....

THEY WON!!!!

Now don't forget to SMILE -- it's contagious.

OHPA

Well, Glory Be

2009-01-28T17:34:00.003-05:00

I know this may be a weird picture for this time of year BUT I just figured out how to get pictures off my cell phone. This was taken last November at the Symposium the Cleveland Clinic had and yes that does say 503 lbs on the pumpkin. Using my head for once, I thought if I just take a picture of the pumpkin it would look like a pumpkin BUT if I took a picture of a nurse NEXT to the pumpkin you would realize just how HUGE it was... HUGE PUMPKIN ---->

Now for the Glory Be part. I'm sure you all get those wonderful automated phone calls about the warranty on your car has expired OR maybe one about getting free dish service for a month if you pay for the installation WELL.... yesterday the phone rang, I answered it and before I hung up on the recording I heard "to be remo".... I was just about to press the off button but I waited. The message said to be removed from further calls press 9 now. I did -- now lets see if that works. Today I received another one of those calls, and I thought.... hmm I wonder if pressing 9 will work on this one. I pressed 9 and I heard my phone number being read off and low and behold the next statement was this number has been removed!!!! Glory Be!!!!

I just had to pass it on. Don't know if it will work but hey, it's worth a try. My thought is once you press 9 be sure to wait for your number to be read... then I believe it will work... I' sure hoping it does. One of those won't hurt to try.

SMILE -- it contagious

Merle

Winter Wonder Land

2009-01-25T12:41:00.003-05:00

I want you to note the depth of the snow on my neighbors truck. Where the color changes is the top or hood of the truck. I was finally able do download this picture and believe it or not, most of that snow is still there. Been too cold to melt.

It has been one of those winters -- you know, one for the books. It has been extremely cold and not just here but across the country. We have had temperatures in the sub zero range -- although that is not uncommon, it is not typical; at least not this early in the season. The news said we haven't had temperatures like these in over 10 years. Kinda falls into place with the election :o) that was one for the books too.

I wish you could have seen the icicles that were on the houses too and I wish I had taken a picture of those. Since they can be very dangerous, most of the neighbors knocked them off before they could hurt anyone. Oh well, I'm sure before winter is over there will be more.

Remember to SMILE -- it's contagious,

Merle ~ OHPA

BA DA BOOM

2009-01-11T10:48:00.005-05:00

You know that commercial that has those 'priceless moments' -- well I had one the other night. My daughter called and said that Jerod was having his band concert and would I like to go and see it. WELL, HOLD ME BACK. Me go to one of my grandkids concerts. Don't think I've missed one yet. They range from someone singing in a choir, to a band concert. This was a band one -- the first of the season for 5th graders and the first ever for Jerod.

The music teacher / band leader had the students come out in groups according to their instruments. You know, horns, percussion, woods etc. They came out with huge smiles on their faces -- they were to stand quietly (and I mention this because it is very hard for a 10 year old to stand quietly) and enough time was given for the proud parents to take pictures. Darn, I forgot my camera and knowing my daughter I'll get a copy of the ones she took maybe sometime NEXT year. Just joking, well maybe not. ;o)

The students were in place, the band leader explained that this was the second time they had all played together -- the first time being 2 days before. He mentioned it may be a little bit of a bumpy performance and he was absolutely right -- it was priceless. He tapped the baton on the podium and the music, and I use that term with the deepest respect, began. I did recognize "Jingle Bells", I had great difficulty recognizing the other songs -- along with every one else who attended the concert. Trust me when I say there were a lot there. Parents, Grandparents -- I live in a small community but they are all about the children and very supportive of them.

Jerod was in the percussion section and there must have been at least 12 drummers drumming -- sounds like a song we all know -- any way his position was behind the BIG base drum. You know the one that would be about as tall as he is. It was on a stand and so from where I sat, and actually where anyone else sat, you couldn't see him. BUT, and you have to know Jerod, when a song was done -- two hands would go up in the air along with those drum sticks and they were Jerod's. Just tickled my funny bone. Even the band leader announced how enthusastic the percussion section was -- that end of it.

Those faces I could see were so intense when they played their priceless music. Cheeks puffing out as they blew into those musical instruments, arms moving to the beat of the song (drummers drumming) -- depending upon what the beat was, but it was an awesome perfromance. Some played on key, some did not. Some played in the right tempo, some did not. Again a priceless performance. They got a standing ovation from the audience. A proud and priceless moment.

Now the trip to and from the concert is a whole 'nother story. I have pulmonary hypertension and we have to be very careful when we go out into that cold evening weather -- the temp was in the mid teens. I covered my face, well nose and mouth to protect me from the elements, had my "just in case" bag with me; I was good to go.

Those of us with pulmonary hypertension have to be very careful. It is a rare disease and is life threatening and with no known cure at this time. My thoughts are with the research and trials that are going on, there is hope and that is what keeps me going. So as I have been known to say: SMILE ~ IT'S CONTAGIOUS.

And now the reason for the season

2008-12-24T14:17:00.005-05:00

The time before Christmas, at many churches, is Advent, a season of preparation for Christmas. We prepare for it by celebrating the birth of Jesus. In Advent we are reminded of how much we also need a Savior, and we look forward to the second coming even as we prepare to celebrate his first coming at Christmas. Let us keep in mind the first in Bethlehem and the second yet to come.

Advent can be a solution to the age-old problem of secular Christmas vs. spiritual Christmas. We need to recognize that Christmas is a time to celebrate the birth of Jesus. Unfortunately, we spend most of our time preparing, not for a celebration of the birth of Jesus, but for fulfilling the demands of the season. We have to buy presents for many people and make sure they are all wrapped and delivered. We have parties to attend and parties to host. We have relatives who come to visit or we are the relatives who go elsewhere to visit.

Are we focusing on the real reason for the season – the birth of Jesus? Are the traditions of Advent helping us to focus more on the Lord, to get in touch with our need for Him, to replenish our hope, and to celebrate Christmas with greater meaning and depth? Or are we facing heavy competition from retailers, relatives and friends. How do we save Christmas from being consumed by consumerism? Not to say giving gifts is wrong but our priorities and overspending, going into debt to give what we can’t afford and giving something they really don’t’ want or need. Instead, we need to put the needs of others above our own our actions need to speak so much louder than our words. Materialism has hijacked Christmas and we need to get our priorities straight. Spend less but give more from your heart. Maybe we should change it to, we need presence not always presents.

The lighting of the Advent candles is a way of preparing for the second coming of Jesus and focuses on Christ's threefold coming: past, present, and future. First, we remember the Lord's humble first coming in Bethlehem two thousand years ago. Second, we give thanks for His present and continual coming to us through His Word. Finally, we look forward with hope and longing to His second coming in glory on Judgment Day.

The first candle symbolizes the hope and anticipation of His coming and is purple or dark blue in color. The second candle we are to ask for forgiveness showing repentance, knowing Christ is the way, again purple or dark blue. The third candle is for joy and rejoicing with anticipation of His coming and is usually pink or rose in color. The fourth candle is a reminder that Christ will bring peace both in our hearts and to the world; this candle is also purple or dark blue. The center candle which is larger and is white is lit Christmas Eve and on Christmas Day and represents Christ himself who is born to save us from our sins. It is a celebration of the fulfillment of prophecy as represented in Jesus’ birth and hope in the fulfillment when Christ comes again. This one will continue to be lit during the 12 days of Christmas or until January 6th or the first Sunday thereafter. Some churches may use a different order for their Advent celebration or sermons but it will be close to this order. Possibly Hope, Peace, Joy, Love and the Christ candle.

May you all have a very Blessed Christmas and remember the reason for the season.

Merle
Smile – it’s one of the best gifts you can give someone.

'Tis the season

2008-12-19T10:44:00.006-05:00

Did you know....
Advent (from the Latin word adventus, meaning "coming") is a season of the Christian chruch, the period of expectant waiting and preparation for the celebration of the Nativity of Jesus; in other words, the period immediately before Christmas .

Advent books often neglect the fact that Advent does not begin on December 1, nor does Christmastide end with the excitement of December 25. (There are four Sundays in Advent before Christmas, it usually begins in late November, and the liturgical season doesn’t officially end until Epiphany on January 6).

The theme of readings and teachings during Advent is often to prepare for the second coming while commemorating the First Coming of Christ at Christmas. With the view of directing the thoughts of Christians to the first coming of Jesus Christ as Savior, and to his second coming as Judge, special lessons are prescribed for each of the four Sundays in Advent.

Remember the song: The Twelve Days of Christmas, it starts with Christmas Day and finishes with the eve of Epiphany on 5th January. The Twelve Days of Christmas dates back to English origins in the sixteenth century although the music is reputed to be French, some say German. The first publication date for The Twelve Days of Christmas (song) was 1780.

Each of The Twelve Days of Christmas has a religious significance and are symbolized following the lyrics of The Twelve Days of Christmas

1 True Love refers to God
2 Turtle Doves refers to the Old and New Testaments
3 French Hens refers to Faith, Hope and Charity, the Theological Virtues
4 Calling Birds refers to the Four Gospels and/or the Four Evangelists
5 Golden Rings refers to the first Five Books of the Old Testament, the "Pentateuch", which gives the history of man's fall from grace.
6 Geese A-laying refers to the six days of creation
7 Swans A-swimming refers to the seven gifts of the Holy Spirit: wisdom, knowledge, faith, healing, etc. ~ see 1st Corinthians 12
8 Maids A-milking refers to the eight beatitudes
9 Ladies Dancing refers to the nine Fruits of the Holy Spirit
10 Lords A-leaping refers to the ten commandments
11 Pipers Piping refers to the eleven faithful apostles
12 Drummers Drumming refers to the twelve points of doctrine in the Apostle's Creed

And the last verse of the song (try not to sing it)

On the twelfth day of Christmas, my true love sent to me
Twelve drummers drumming,
Eleven pipers piping,
Ten lords a-leaping,
Nine ladies dancing,
Eight maids a-milking,
Seven swans a-swimming,
Six geese a-laying,
Five golden rings,
Four calling birds,
Three French hens,
Two turtle doves,
And a partridge in a pear tree!

May you all have a Blessed Holiday Season -- Merry Christmas everyone

Merle

And don't forget to smile -- it's contagious

Pay Attention

2008-12-02T10:59:00.004-05:00

One of the many lessons in life is to pay attention to what you are doing. I'm sure as a child you heard it from either a parent, teacher or someone older -- you need to pay attention to what you are doing -- you don't want to do that wrong -- it will come out wrong if you don't pay attention to what you are doing....

I guess I didn't pay attention enough as this morning when I got up things just didn't seem to go right at all. I got out of bed too fast so that was my first mistake, on my way to answer natures call I was a little off balance but managed. By the time I did my thing, I was fine. Sticking to your normal routine is important -- so I guess I should say pay attention to what I am doing. Like getting out of bed slowly -- dropping my legs, slowly.

I'm thinking to myself -- self this is not the way to start off the day so I found my pulse ox and put it on, don't know why I did that but I did. I then walked from the living room to the kitchen to make breakfast. My oxygen level dropped from 93 to 85 on that little trip. HMMM... Heart rate went up to 125... well all systems seem to be working ~ maybe not as they should be but they're working.

Looked out the window and saw a dusting of snow (not again) but just a dusting ~ whew and of course it was chilly so I thought I'll make a nice cup of hot chocolate, that should get my juices running. Also thought a nice piece of cinnamon toast would go along great with the hot chocolate. Popped a slice of bread in the toaster, made the hot chocolate, put some butter on the toast when it reappeared from the depths of the toaster and it melted just right, went to my spice thingie and reached for the cinnamon. This is where the pay attention part comes in... I unscrewed the cap and started shaking, hmmm not dark brown like it should be and I'm thinking it was ginger so I kept on shaking. Then when I was done I thought, I'll just add the cinnamon and have a new creation.... Put the cap back on, looked at the container and it said "onion powder"... Oh YUK what did I do!!!! Well, I wasn't about to waste a piece of toast so I shook off as much powder as I could and then PAY ATTENTION came into place. I did get the cinnamon and gave it a good dousing on the toast, the butter was still at that put something on me stage, and I shook away. Didn't taste too bad -- didn't taste too good either *;* And right now I have this horrible onion taste in my mouth -- might have to make me some more cinnamon toast -- or not get too close to anyone today ~ wish me luck.

Merle ~ OHPA
And don't forget to SMILE ~ IT'S CONTAGIOUS

Remembering to be thankful

2008-11-26T19:09:00.008-05:00

This morning started off with a ring -- the phone *;*. Easy enough. I'm on the PHA Help Line this week so I answer the phone in a special way -- not the typical Hello. It was an easy call, a doctors office called and said a family member of a patient wanted to make a donation to PHA and how should they go about it. I passed on the information.

Next, I looked out the window... another six inches of snow. Snow can be beautiful -- to look at... but when you have pulmonary hypertension, it's a different story. I wondered if I had to go out, who would clean my car off... who would shovel my walks and porch. This is now something I cannot do any more. Not only because of it being cold outside but because of the energy it would take to do those tasks. Luckily my son-in-law stopped and cleaned off my car.

Seems the things I once could do are now a major task. Having pulmonary hypertension is a major lifestyle change. Many people when they hear what you have think of "hypertension" which can be controlled with medication and a proper diet -- and your life may go back to what it once was. It is nothing to sneeze at but is easier to treat than having PH. Not so with having pulmonary hypertension; it is a disease that affects both your heart and lungs. It is a progressive disease, a life threatening disease with no known cure at this time. If it is detected early enough you may have a chance of having a somewhat normal life. Unfortunately, in most cases it is not detected early enough and that's when your lifestyle can change drastically. You can become a little sob (that's short of breath - thank you very much) with little exertion, you may have chest pains, edema, fainting spells; just to name a few of the symptoms.

November is Pulmonary Hypertension Awareness month and off and on I have tried to keep up with some of my other phriends who have written about their dealings with having pulmonary hypertension. Some have told their stories, some have been able to have reports on the evening news and many have been able to have newspaper articles placed in their local and not so local newspaper. Some have written technical blogs that explain this disease. All for the cause of awareness and for what I call this dastardly disease --> pulmonary hypertension. Again it is a progressive disease with no cure at this time but there are treatments and with the proper one, it can be doable. Your quality of life can be improved and your life expectancy can be extended.

This morning during ph "chat" I mentioned about the snow and one of my phriends from TX asked me to take a picture and post it. One is from my window right beside my computer looking out my back yard and my car and the other is from out my front door looking down the street. I'll have to have the kids come over and build a snowman -- I'll send it on when they do.

Tomorrow is Thanksgiving and I want to wish everyone a Happy Turkey Day -- I have so much to be grateful for I wouldn't have enough space here to list it all. Let us all be thankful for what we do have and enjoy this very special family day.

Merle ~ OHPA
And don't forget to smile -- it's contagious

Clinical Trials --> Part 2

2008-11-23T09:27:00.004-05:00

When doing a clinical trial or clinical research for pulmonary hypertension or most any disease, the patient cannot be too sick or actually too well but strong enough to endure the length of the process; procedure; or treatment that may be involved.

Choosing to participate in a clinical trial is an important personal decision (I guess the critters don’t have a personal choice or decision to make). A clinical trial (also called clinical research) is a research study in human volunteers to answer specific health questions. Some clinical trials involve more tests and doctor visits than the participant would normally have for an illness or condition and there could be risks involved; be sure to ask many, many questions.

There may be unpleasant, serious or even life-threatening side effects to treatment.
The treatment may not be effective for the participant.
The protocol may require more of their time and attention than would a non-protocol treatment, including trips to the study site, more treatments, hospital stays or complex dosage requirements.

Interventional trials determine whether experimental treatments or new ways of using known therapies are safe and effective under controlled environments. Observational trials address health issues in large groups of people or populations in natural settings.

As previously mentioned all clinical trials have guidelines about who can participate. Using inclusion/exclusion criteria is an important principle of medical research that helps to produce reliable results. The factors that allow someone to participate in a clinical trial are called "inclusion criteria" and those that disallow someone from participating are called "exclusion criteria". These criteria are based on such factors as age, gender, the type and stage of a disease, previous treatment history, and other medical conditions. Before joining a clinical trial, a participant must qualify for the study. It is important to note that inclusion and exclusion criteria are not used to reject people personally. Instead, the criteria are used to identify appropriate participants and keep them safe. The criteria help ensure that researchers will be able to answer the questions they plan to study.

The clinical trial team includes doctors and nurses as well as social works and other health care professionals. They check the health of the participant at the beginning of the trial, give specific instructions for participating in the trial, monitor the participant carefully during the trial, and stay in touch after the trial has been completed.

Merle
Don't forget to smile - it's contagious

Clinical Trials - Part I

2008-11-22T10:30:00.005-05:00

A few days ago the buzz was that an oral medication that was “in trial” for treatment of pulmonary hypertension, failed – not true, actually it hit a bump in the road. There is a lot that goes into a having a trial or a study; the so called research. There are rules and regulations, procedures to be followed and I will try to list a few.

Trials or research programs have certain guidelines that are followed – the participant or patient must be sick enough to be in the program but strong enough to be able to endure the process.

The FDA requires that people be told:

That the study involves research of an unproven drug, biologic (such as a vaccine, blood product, or gene therapy) or device
The purpose of the research
How long the participant will be expected to participate in the study
What will happen in the study and which parts of the study are experimental
Possible risks or discomforts to the participant
Possible benefits to the participant
Other procedures or treatments that might be advantageous to the participant instead of the treatment being studied
That the FDA may look at study records, but the records will be kept confidential
Whether any compensation and medical treatments, if any, are available if the participant is injured, what those treatments are, where they can be found, and who will pay for the treatment
The person to contact with questions about the study, participants' rights, or if the participant gets hurt
That participation is voluntary and that he or she can quit the study at any time without penalty or loss of benefits to which the participant is otherwise entitled.
And of course, the infamous “consent form”

Clinical trials are conducted in phases. The trials at each phase have a different purpose and help scientists answer different questions:

In Phase I trials, researchers test a new drug or treatment in a small group of people (20-80) for the first time to evaluate its safety, determine a safe dosage range, and identify side effects.
In Phase II trials, the study drug or treatment is given to a larger group of people (100-300) to see if it is effective and to further evaluate its safety.
In Phase III trials, the study drug or treatment is given to large groups of people (1,000-3,000) to confirm its effectiveness, monitor side effects, compare it to commonly used treatments, and collect information that will allow the drug or treatment to be used safely.
In Phase IV trials, post marketing studies delineate additional information including the drug's risks, benefits, and optimal use.

Trials can be as short as 3 months or may last a few years.

More to follow within the next few days.

Merle - OHPA
Smile -- it's contagious

Hypertension - Pulmonary Hypertension

2008-11-18T11:50:00.002-05:00

Like apples and oranges -- many similarities but so very different. It is important to know the difference and maintain proper treatment.

Blood pressure is the force in the arteries when the heart beats (systolic pressure) and when the heart is at rest (diastolic pressure). It's measured in millimeters of mercury (mm Hg). High blood pressure (or hypertension) is defined in an adult as a blood pressure greater than or equal to 140 mm Hg systolic pressure or greater than or equal to 90 mm Hg diastolic pressure.

High blood pressure directly increases the risk of coronary heart disease (which leads to heart attack) and stroke, especially when it's present with other risk factors.

And then we have: the Pulmonary Veins return oxygenated blood from the lungs to the left atrium of the heart. After blood enters the left side of the heart it is pumped to the rest of the body. There are four pulmonary veins that return blood to the left atrium.

Primary or unexplained pulmonary hypertension (PPH) is a rare lung disorder in which the blood pressure in the pulmonary artery rises far above normal levels for no apparent reason. The pulmonary artery is a blood vessel carrying oxygen-poor blood from the right ventricle (one of the heart's pumping chambers) to the lungs. In the lungs, the blood picks up oxygen, then flows to the heart's left side, where the left ventricle pumps it to the rest of the body through the aorta.

Hypertension is a medical term for abnormally high blood pressure. Normal average (also called "mean") pulmonary artery pressure is about 14 mm Hg at rest. In patients with PPH, the average blood pressure in the pulmonary artery is greater than 25 mm Hg at rest and greater than 30 mm Hg during exercise. This abnormally high pressure (pulmonary hypertension) is linked with changes in the small blood vessels in the lungs. These changes increase resistance to blood flowing through the vessels. This increased resistance puts a strain on the right ventricle, which now must work harder than usual to move enough blood through the lungs.

Symptoms of PH include:

The first symptom is often fatigue or tiredness. Many patients think that they're simply "out of shape."
Difficulty in breathing, dizziness and even fainting spells can occur.
Swelling in the ankles or legs, bluish discoloration of the lips and skin, and chest pain more often occur later in the disease.

One of the great difficulties in treating Pulmonary Hypertension is that the diagnosis is often delayed due to the slowly progressive and insidious onset of the symptoms. AHA

OHPA

Don't forget to smile -- it's contagious

Pulmonary Hypertension --> Awareness

2008-11-15T11:56:00.006-05:00

Specialty Definition: Lung

The lung is an organ belonging to the respiratory system and interfacing to the circulatory system of air-breathing vertebrates. Its function is to exchange oxygen from air with carbon dioxide from blood. The process in which this happens is called "external respiration" or breathing. Medical terms related to the lung often start in pulmo- from the Latin word pulmones for lungs.

Lung - Noun

1. Either of two saclike respiratory organs in the chest of vertebrates; serves to remove carbon dioxide and provide oxygen to the blood.

Pulmonary hypertension is classified into five different types:

· Pulmonary Arterial Hypertension (PAH) -- This form affects the blood vessels in the lungs that carry blood from the heart into the lungs where it picks up oxygen. This category is subdivided into two types:

Primary pulmonary hypertension (PPH), which can occur for no discernable reason or - in about 10 percent of cases -> is inherited. It is very rare. It most often occurs in young adults and is more than twice as common in women as men
PAH related to exposure to toxins including diet drugs such as fenphen; street drugs including cocaine and methamphetamine; HIV; collagen vascular diseases including scleroderma, lupus and rheumatoid arthritis; chronic liver disease; and congenital heart diseases. Considered more common but is still rare.

· Pulmonary Venous Hypertension (PVH) -- This form is caused by diseases of the left side of the heart, such as heart failure or mitral valve disease. This can increase pulmonary artery blood pressure but usually doesn't become severe PAH.

· Respiratory System -- Pulmonary hypertension can be associated with diseases of the respiratory system including interstitial lung disease, emphysema, asthmatic bronchitis, sleep apnea and chronic exposure to high altitude.

· Chronic Blood Clots -- Blood clots in the lung blood vessels

· Blood Vessel Disorders -- Pulmonary hypertension due to disorders directly affecting the blood vessels in the lungs such as parasites, or inflammation of the blood vessels.

There is so much information out there I am amazed I don't have my degree in PH yet *;*

Merle - OHPA

Hey Judi -- Happy Care Taker Day

Remember to always SMILE -- it's contagious

Not laughing in stitches but the other kind

2008-11-14T14:29:00.005-05:00

Some have mentioned it's a BTDT situation or had similar adventures ~ this having pulmonary hypertension can and usually does change your life style but again remember it's a doable disease. Treatments are out there and some of us are on combination treatments, some on a single medication and when our doctors see what our pressures are -- they go from there to see what best suits our individual needs. We are each unique in our needs and treatments and it's so very important to let our doctors know how we are doing and what we are feeling.

A note to my PH doctor after the adventure below. I have a very good relationship with my PH doctor and nurses. They have been through a lot with me and are always there to answer my questions and give me support when needed. The Cleveland Clinic ROCKS....

"I was going to try to tough it out but I can't and Tom doesn't want to go to Cleveland for a 15 minute non appointment. I called my PCP and he will take out the stitches next Wednesday. It will be the DR and not a nurse. The one end is digging into my skin and is really starting a blister, the other piece is almost covered with skin and he might have to slice and dice to get those stitches out. Your thoughts???

I am tired of all the pain. The bottoms of my feet hurt, my ankles really hurt and ache all the time, my legs ache more than they every use to and I am taking Tylenol more often than I ever did. But, hey, I can breathe!!!" I guess I was having a bad day; that was two years ago ~ I am much better now.

Seems when you have a set back, "things" tend to get in the way and you might want to moan and groan some. Go right ahead, moan and groan, it's good for the soul *;*

Melre ~ OHPA
SMILE ~ IT'S CONTAGIOUS

A PH Adventure -- one of many

2008-11-13T11:15:00.006-05:00

What you are about to read is something I wrote in July of '06 -- one of my many adventures with having PH and another epistle... Pulmonary Hypertension is a rare life threatening and progressive disease. At this time there is no cure but there are several treatments that can help you maintain a good quality of life. It's doable, scary at times but doable. With the proper attitude and lots of gratitude we will do fine.

Just in case you were wondering where I've been, the short of it is in the hospital for the better part of two weeks and then a home care nurse for two weeks at home. If you want a long read ~~ it's below. Volume III Chapters 18 through -- just joking....

Well, I'm back. What a month!!! Went for a regular check-up the middle of May on a Monday, they of course asked me how I was feeling and I said I felt like I was coming down with a cold. Big mistake -- well, maybe not -- they took my temp and I had a fever!!! So my DR said I get to stay at the luxurious, comfortable, well equipped hospital at the Cleveland Clinic. He didn't want to take the chance that my line was infected. I was admitted to the hospital right then and there. You might know, it's one of the only times I didn't bring a book with me. The testing started right away, about midnight they finished up for the day. Pokes, probes and x-rays. They do their regular middle of the night testing as well -- you know, take your BP, weigh you, take your temp (mine was still too high) and if you're really lucky they'll draw some blood!! Their mornings start about 6 a.m. give or take 15 minutes and again you have the routine: BP, weight, temp and maybe a blood draw. I had to have a special blood draw for a culture test -- just a couple of extra tubes and they were special color coded tubes. I was in style--color coded--who could ask for more. With a blood culture test you have to wait 3 days, with regular blood tests you can get the results within and hour, two at the most. The x-ray results showed that I didn't have pneumonia; at that point I wasn't sure if that was good news or bad news. If I had pneumonia they could cure it; if it wasn't, what did I have that made me feel so crappy (that's becoming one of my favorite words-but it says it all). I was put on two different types of IV antibiotics. I guess they felt if one doesn't work, they other will -- just joking there. I did learn that not all antibiotics will kill those little critters that are in your blood stream and that's why you need two. Well, naturally, being me, I had a reaction to one of them -- the one that was killing those little critters. I broke out in humongous hives all over my bod; well I don't think I had any on my nose but the rest of me was covered and sooooo itchy. Bring on the Benadryl!!! They gave me a shot of that and from then on I had a shot of Benadryl first then the antibiotics. And guess what, the Benadryl makes it difficult for me to breathe but it beat having those hives. I adjusted....

Each day the culture showed no signs of little critters so I was happy for that. That would mean that my line wasn't contaminated. They not only drew blood from each arm but also directly from my Hickman--the line that goes into my heart with the medicine and that's the one they were concerned about. Thursday came and still no little critters showed up. I was beginning to feel better, my temperature was normal (I have something normal?). The DR came in and said that I might be able to go home, they would rather keep me one more day -- just in case -- but if the next regular blood draw came back o.k., I could go home ~~ with the understanding that if something showed up in the culture, I would have to come back to the luxurious resort hospital at CCF in Cleveland, OH. I was sent home.

Home at last. I was sent home with a pill form of an antibiotic. I was tired, I was beyond tired, I was exhausted. You never get any rest in a hospital. Once my head hit that pillow that was all she wrote until the next morning. Home sweet home, it sure beat that luxurious resort I just came from.... I figured I'm just gonna hang out for the day. Didn't even get out of my jammies. Mid afternoon I got the call I was so hoping I wouldn't get. The nurse called and said something showed up in the culture. Bummer! I was told I could go to my local hospital and get another blood culture draw through them. That way I could stay home for the weekend and if nothing showed up at all, I would already be at home. Did I mention that my DR said he was going to change Murphy's Law to Merlie's Law. You know, if something is going to wrong, it will. Well, I had some complications with that blood draw but I'm not going to get into that one. Needless to say, it was not a pleasant experience.

Monday morning I got the call I didn't want to get and was told to get over to Cleveland like right now. Tom came over after golfing and what a surprise I had for him; I really don't know what I would do without him. He is such a support and comfort for me and all I give him is heartache and grief and that long ride to Cleveland. He was not a happy camper but off we went. At least this time I had a change of underwear and I brought a couple of books. I figured I would be there at least 3 or 4 days. They don't waste any time when you get there. They barely give you a chance to get into their wonderful wardrobe before they start in. You know they give you a wonderful outfit to wear at this luxurious resort hospital; it has tie strings and snaps and a special pocket for your portable heart monitor. I was in style, the outfit was sheek. Who could ask for more than that.

Tuesday early morning came and they put an IV in my arm for my Flolan (the med that usually goes into my heart through the Hickman), I can't be without it and then they took me to radiology to remove my Hickman. I was given a pain killer (ya, right--by the way, unless it is absolutely necessary people with Pulmonary Hypertension should not be put out and under with any anesthetic) and started to slice and dice as my skin had of course become attached to the line where it entered my chest. It really didn't hurt but I could feel what was going on. The line was placed in a "hazardous" bag and off it went to the lab and off I went back to my resort quarters, my suite.

Flolan is a very potent drug and every time the pump went off to shoot the med into my body I could feel the pain. I was totally surprised with that one. I always joked how the pump sounded like a camera shutter but I never felt the medicine going into me. This was a new experience. And guess what -- Merlie's Law fell into place. The Flolan blew my vein so they put it in the left arm. The pain in that arm was excruciating and again it blew the vein; I asked them to put it back in my right arm, although it was painful at least I could tolerate it in that arm. My arms were turning red beyond my elbows so something else had to be done. This all happened through out the day -- I mean it didn't all happen within 5 minutes or so.

The "Orange Team" was called in and all I could think of was the Terrorist Alerts. When it reaches "orange", you better take things a little more seriously. I think the next step up in the medical field is "Code Blue" and I've been there, done that and I don't want to go there again. I was told they were going to put in a "Central Port" in my groin area and that line would run up to my heart and the Flolan could be attached and things would be fine. Ya, right!!! They gave me a pain killer and started to slice and dice (that's becoming too familiar to me) my nurse gave me two of her fingers to hold (she was just great) and I told her I might break them. I said OOOWWWW!!!! and they said can you feel that?? Well, dah!!! They gave me more pain killer. I said OOOOWWWW again and they said can you feel that??? I mean give me a break. More pain killer then they sliced and diced again (there were 3 of them and they took turns) and told me I had a strange anatomy. Say WHAT!!!??? I felt like asking if anyone needed salt and pepper. From where I could see it looked like they were cutting up a steak!! The line would kink and wouldn't go in.

They decided to go into my chest but they had to stop the bleeding from my leg. I could feel pressure but I couldn't feel pain by that time and just try to picture 3 grown men pushing as hard as they can on your upper leg. The bleeding finally stopped and they started to slice and dice on my chest -- now remember that I had the Hickman removed from there. They decided to cut on the right side as they figured that the new Hickman would be put in on the left side... I mentioned that I thought the DR that removed the Hickman said it might go back in on the right side; they said it usually goes in on the opposite side of the previous Hickman. More pain killer and they started in to slice and dice. They asked if I had any pain and I said no but I could feel them moving around. Again they said my anatomy was strange (Merlie's Law?) and they were having difficulty. I then told them they were at my throat. Wrong turn at the crossroad... They tried again and I started to scream MY EAR, MY EAR!! They stopped and pulled back on the line and tried again. That one really hurt and I thought for sure I broke my nurse’s fingers, she said she was fine. Through out this procedure my nurse stayed right with me except for a few times when she had to get more pain killer (Merlie's Law) and a couple of other things for the DR's. Finally they thought they had it in place. I can't remember if it was 4 or 5 hours that they were messing with my body. An x-ray was ordered and they finished up at 3 a.m. At 4:30 a.m. the techie came to my room for the x-ray, I was so glad I didn't have to go to them and he even took the picture while I stayed in bed; he said it would be ready in an hour or so. The Flolan couldn't be put into the new line until it was checked out. At 8 a.m. my DR called x-ray and got the results, the line was in the proper place and I could be hooked up to my Flolan. The pain in my arm finally stopped but I got a new one -- my leg. Because of the pressure they used to stop the bleeding in my leg they bruised it badly. I had a major blood clot (not the kind that can kill you) and I couldn't walk. I had a pressure bandage put on and I was told to stay in bed -- not to walk it off as I was hoping I could do.

Wednesday I was in such pain that I don't remember much of it. The Tylenol that they gave me barely helped. I couldn't read, I didn't want to watch TV but I had it on to try to take my mind off the pain. I didn't want to eat and I had IV's going in here and there. As long as I didn't move I could handle the pain. I was told I might be able to go home on Thursday if my blood culture came back negative. I put my mind in gear and said that I would walk on Thursday.

Thursday morning they came for me with a gurney and brought me to the operating room -- had to have a new Hickman put into place. More pain killer -- was it becoming my friend?? No way and I wished it worked for my leg and not just the area they were working on... more slice and dice -- and then the new Hickman was in place. They also put a PICC line in my arm. I was told that when I went home I would have to have an IV antibiotic every day for two weeks and a nurse would come to my home to hook me up. Tom called me every hour to see if I would be coming home. They were trying to find a nursing home care that would be local to me. They finally found out that Sharon Regional has a nursing home care program and they would be able to come to my home to administer the "Vanco". Shortly after supper I was discharged. I had to have the nurse or the transporter lift my leg in and out of the wheelchair and then help me lift my leg so I could get into the car... The nurse gave my some Extra Strength Tylenol just before I left; she knew the ride home (2 1/2 hours) would be painful sitting upright that long. It took the edge off. By the time I got home I was exhausted and Tom had to help me lift my leg out of the car and then he said maybe I should have stayed another day or two. Wrong!!! No matter how much pain I was in, being at home was so much better than being in the hospital. It took me about 20 minutes to get up the stairs (all 14 of them). I was tired, I was in pain and I just wanted to put my legs up and off the floor and lean back. Tom made sure I had some Tylenol handy, got me my favorite drink made sure I was comfy in my recliner and then he had to leave. It was bedtime and I just slept in the recliner that night.

Friday morning came too soon. About mid morning the doorbell rang. OH NO, BUCKWHEAT! Luckily the FedEx driver knows that I don't move too fast anyway. He had all the meds from The Cleveland Clinic. Shortly after that the nurse called and said she would be there around 12 noon. She opened the box of goodies and arranged them in an order that was convenient for the procedure. The medicine was placed in the refrigerator and the rest of the goodies were left in the box. I now have my own IV pole, bet you’re jealous about that one... The same nurse would come during the week and different nurses would come over the weekend and this of course all started over the Memorial Day weekend so all plans for any cookouts involving me or Tom were cancelled. The only time I got out of my recliner was to go to the bathroom or go to bed and for that one I had to rig a little step up and get into bed backwards. I still couldn't lift my leg on its own and it was too hard for me to lift it if the other leg was already in the bed -- hurt too much to bend over -- so I just slept with my head where my feet should be and my feet where my head should be. Hey, whatever works. If I had to get up -- which was a chore -- and after a few steps I could do a little better. By the second Saturday I was home my leg finally started feeling a little better. But of course, I overdid it that day and paid for it for the rest of the day and on Sunday. I couldn't sit upright so I have been going through computer withdrawal as well. I so wanted to send on all the jokes that I received but I just couldn't sit at my desk for any length of time. Today after almost five weeks of all this I am able to sit for a little bit of time. My leg is still sore and I still have trouble lifting it properly but I am able to sit for a little while. Although I could take sponge baths I look like a rat in a storm sewer. Still can't bend over too well and anything that hits the floor stays there until Tom or Elizabeth (our daughter) come over, they have been getting most of my meals for me.

I want to thank those who called or even wrote wondering what happened to me and to those who were away themselves and to those who I don't write to all the time, this is my latest adventure. I finished up with the antibiotics yesterday and the nurse removed the PICC line from my arm. I am on the road to recovery and I hope it won't take me too long to get caught up with all those wonderful jokes, and inspirational messages that kept me going. I did respond to a few folks but it was with using only one finger and that took too long.

Merle ~ OHPA

SMILE - IT'S CONTAGIOUS

A Very Special Day

2008-11-11T17:23:00.007-05:00

Although many are posting for awareness about Pulmonary Hypertension, I'm going to change course for today. Today is a very special day ~ it's Veterans Day and I was brought up to honor and respect our Vets. To always say thank you to them for a job well done, to show appreciation for the sacrifice they have made while serving their county, our country, my country -- this great land and nation known as these United States of America.

Many have sacrificed their lives for this nation and other nations, many are still serving to protect our rights and freedoms as many have in years gone by. For the most part, war veterans are treated with great respect but lately remembering America’s warriors is often an afterthought for many Americans.

November 11, or what has come to be known as Veterans Day, was originally set as a U.S. legal holiday to honor Armistice Day - the end of World War I, which officially took place on November 11, 1918. In legislature that was passed in 1938, November 11 was "dedicated to the cause of world peace and to be hereafter celebrated and known as 'Armistice Day.' As such, this new legal holiday honored World War I veterans.

In 1954, after having been through both World War II and the Korean War, the 83rd U.S. Congress, at the urging of the veterans service organizations, amended the Act of1938 by striking out the word "Armistice" and inserting the word "Veterans." With the approval of this legislation on June 1, 1954, November 11 became a day to honor American veterans of all wars.

I have chosen the Flame of Hope logo (in afghan form) for the Pulmonary Hypertension Association as a reminder that without these warriors to protect and serve on our behalf there would be no hope or freedom of any sort for this great nation.

A lot has happened to this country and the world in general over the past few years and these brave men and women need to know how much we appreciate them. We need to come together as one nation and support them in anyway we can.

Thank you my warriors for freedom; for the privilege to be able to write this and the hope of what will be a tomorrow.

Merle ~ OHPA
And smile, it's contagious

Pulmonary Hypertension ~ Symptoms

2008-11-05T11:42:00.006-05:00

Often misunderstood; the severity of Pulmonary Hypertension is not recognized by many who associate PH with common high blood pressure instead of a distinct and grave illness.

Symptoms may include: Shortness of breath with minimal exertion, chest pain, unusual fatigue, a dry cough, edema, heart palpitations, fainting and dizzy spells. This disease, described as "progressive and fatal", causes blood vessels in the lungs to thicken, restricting blood flow therefore making the right side of the heart overwork and lead to heart failure. It can be a silent killer.

Since the damaged heart is unable to perform its pumping function in an effective manner, it will lead to a disturbance in the pulmonary circulation process, which eventually leads to develop unusually high pressure in the pulmonary veins. Since the pressure in the pulmonary veins rises, it bounces back to the pulmonary arteries and will cause some or all of the above mentioned symptoms.

Pulmonary hypertension is a very serious condition, one that should be assessed and treated as early as possible, and the doctor should be continuously checking back to make sure that the proper therapy is being used and working properly.

New York Heart Association Classification
I. PH patients in this category have no symptoms during ordinary physical activity, their hearts function normally.
II. Although these patients are comfortable at rest, ordinary physical activity is somewhat limited by undue breathlessness, chest pain, fatigue, or near fainting.
III. These PH patients usually have no symptoms at rest, but their physical activity is greatly limited by breathlessness, chest pain, fatigue, or near fainting while doing routine things.
IV. These PH patients are often breathless and tired even while resting and can't do any physical activity without symptoms. They show signs of right-heart failure. Under the WHO system anyone who is prone to fainting goes into this class.

PH Awareness

2008-11-03T18:40:00.002-05:00

You've probably heard of high blood pressure (hypertension), a common condition that affects the way your blood flows through the arteries in your body from the left side of your heart. A less common type of high blood pressure, called pulmonary hypertension, affects only the arteries in the lungs and the right side of your heart. It is a sneaky disease -- hard to diagnose and often misdiagnosed.

For several years now, November has been designated as Pulmonary Hypertension Awareness Month and that's where this PH community comes in. By making others aware of this dastardly disease. We need to contact our local newspapers, submit an article or write a letter to the editor. Something, just about anything will do to help the cause. Shout it from the roof tops -- well maybe you don't have to go to that extreme but I think you get the picture.

When you leave your home, do you have those PH brochures handy to pass out -- when someone asks how you are doing do you tell them about Pulmonary Hypertension. If they say "oh you are looking well" -- I come back with "I guess the medicine is working." Let them know it isn't something you get over -- it is something you have to live with.

Pulmonary hypertension is a serious illness that is classified as progressive and can be fatal. Although it isn't curable at this time, treatments are available for pulmonary hypertension that can help lessen symptoms and improve our quality of life. It's a doable disease and there is hope.

Hugs to you all -- and smile, it's contagious.

Merle

November is here

2008-11-01T18:40:00.002-04:00

This picture reminds me of over the river and through the bridge to Grandmother's house we go... well, that special day is coming up real soon. Before you know it we'll be having Turkey and all the fixings -- mashed potatoes - enough for an army, sweet potatoes, brown gravy, corn (maybe even some on the cob), stuffing -- if you're from these parts it's called filling -- go figure... oyster stuffing (yuk on that one), peas, carrots, other veggies and let's not forget the green bean casserole. Cranberry relish, multiple salads, home made rolls, pumpkin pie, apple pie, mincemeat pie, probably at least two of each and I'm sure I forgot some of those fixins.
It's been a while since I was the turkey cooker, now Tom is in charge, I must admit I do get to chop up the onion and celery for the stuffing the night before the feast and I get to bring the green bean casserole -- what's a holiday meal without green bean casserole -- the kids set the table, clear it off when we're done and load up the dishwasher. I get to sit in the other room with my feet up.
As a child I was the official cranberry relish maker... my Mother would clamp the meat grinder to the counter and I would very carefully now.. place those cranberries and orange rind in the grinder and crank away. It was a very important job and I was so proud I was old enough to do it. As I grew older, it was still my job and I still enjoy making that relish - brings back fond memories of family gatherings -- something we aren't able to have as often now a days. Oh, we have our family but not the extended family members like great Aunts and great Uncles and the Grandparents. We are the Grandparents now but our brothers and sisters live too far away to join our feast.
I want to try to write a little more often and maybe if I don't write my usual novel, I could so I'm going to stop now. Guess I'll be writing fleeting thoughts.

Hugs to all and smile, it's contagious,
Merle - OHPA

Well, darn it all anyway

2008-10-25T20:28:00.002-04:00

I know, don't fall over -- twice in the same day but this really deserves a note. Today was "Trick or Treat" day in my little community and darn it all anyway, I missed it. About 5:30 my door bell rang (kitchen door) and there was a hobo with a walking stick and a space man. Together I heard, Hi Grandma -- Trick or Treat....

Trick or Treat is from 4 to 6 pm so it's still daylight outside. You are to leave your outside light on if you want treaters, if not, they will walk on by. I was really looking forward to this special day. For 5 years I couldn't see all those ghost, goblins, witches, princesses -- all those special people who come and gather up treats. Being on the second floor just made it impossible to answer the door so the first floor would have been a happening thing AND I MISSED IT. Dang!!

I told the boys they are going to have to let me know when these special events happen -- I think I'm a kid at heart because it just gets my juices all stirred up with these special days and I usually get "dressed up" too. The boys were great, they shared their candy with me so I had a special treat too. Hope I didn't miss the parade.

Hugs ~ and smile, it's contagious

OHPA <-- that's my disguise *;*

Whoo Hoo

2008-10-25T10:40:00.007-04:00

We had our October Mercer meeting -- it went very well. The Assistant Deputy Director on Area Agency on Aging started off with health programs that are available in Pennsylvania. We are very fortunate -- we have the PACE and PACE Net programs and my understanding is a lot of the other states are working on getting them. It's an insurance program, will help with that infamous donut hole and help with many other issues. We were told of a Caregiver program that is also available, they will actually pay a Caregiver to mix your meds, help with your hygiene (giving you bath, etc) and some other essential things you may need to have done. I guess the government, whether it be State of Federal, figures it's cheaper to pay a caregiver than to pay for a nurse to come to your home or pay for you being in a nursing home. Go figure and I must look into that one.

Sam speaks to the Mercer Group every year and has a wealth of information to pass on. Most every county has an office on Area Agency on Aging and they not only help those who are aging but those who are disabled. He also hosts a radio show every Friday and once a year, usually November for awareness month, Betty, the Support Group Leader and I, Co-Leader, along with a sponsor (we rotate those) get to be on the radio and talk about Pulmonary Hypertension.

Next on the agenda was our Congressman but due to a conflict with the political race, he was unable to attend. He did however send his D.C. Legislative Aide, Kelly, whom I have worked with and talked with for several years. Kelly has been able to attend the PHA Legislative Luncheon's in D.C. and has always been there for me when I have one of my many issues -- usually it's the Pulmonary Hypertension and Research Act and asking for co-sponsorship of that bill. Congressman English has always been gracious enough to co-sponsor the bill for us and he also has been there for me with some of my other issues.

Kelly spoke to us about HR 6568 and how when presented to the House it passed without question. She also talked to us about HR 6331 -- the Medicare/Medicaid bill -- this one, although a different number, comes up every year and is amended as needed. She explained how important it is for us to call, write or email our politicians -- everything is logged in and read and passed on to the Representative. Those politicians do listen to us. So now we need to call our Senators and get them to co-sponsor HR 6568 -- it still isn't too late to call their D.C. office and their number is usually listed in the "blue" pages of your phone book.

That was on Thursday -- Friday morning my local State Representative had his annual "Expo" for his constituents. His area covers a few counties so has has 2 or 3 of these. Here again, a wealth of information. Tables for health spas, visiting nurses, State and Federal Insurance programs, educational programs/scholarships, 911, AARP, State Game Lands. A full spectrum of almost anything you could think of. Accredo had a table so Betty and I shared half of it and we set up with brochures and ran several CD's for and about PH. I didn't even get a chance to visit all the tables but I did come home with tablets, pens, pencils, nail files and even a mini flashlight; of course many brochures on all the whatevers that were there that I did get to visit. I would guesstimate about 50 vendors were there. I did make a point of stopping at the County Public Assistance table.

Now for the whoo hoo part. I saw many folks I haven't seen in years and this one man came to our table and said his doctor told him he has "some" pulmonary hypertension so he asked what it was. We of course told him. I mentioned that he looked familiar and asked his name, well whoo hoo, we have a mutual friend and we haven't seen each other in proably 15 years. Small world. He mentioned how he is becoming more and more sob. I gave him my phone number and told him to give me a call -- darn he just missed the SGM by one day. I then thought, why didn't you get his number... dah, another PH moment. I went out and looked for him -- now mind you, there were a few hundred people there by that time. I couldn't find him BUT he came back with some more questions, I got his number, also told him about the Symposium that CCF is having in November for Awareness Month and he is hoping he can go. He also goes to the Clinic for another health issue. He called me at home in the afternoon and I have mailed him info about PH -- his computer is down. It really makes you feel good when you know you have been able to help some understand the seriousness of this dastardly disease.

Well, I could write more of some of the happenings at the Expo but I'll save those for another time. Seems I write a novel when I want to keep it just short and sweet. Oh well, you'll have this.

Hugs to all ~ and smile, it's contagious....
Merle ~ OHPA

Happy Days -- those days that make you feel good

2008-10-19T17:45:00.005-04:00

You know how some days are just better than others... well, that's been happening ~ not a lot but a little more often than usual. Had the Walk & Roll in September to raise awareness and funds for research et al for Pulmonary Hypertension -- it went well, didn't have as many as last year but with the price of gas (which now has gone down quite a bit) some were unable to attend. Gorgeous day and last year it was sooo cold. We had our salt-free wiener's, did our 6MW (for the cause) -- some games were played and lots of chatting -- a feast to beat all.

A couple of weeks after that was my regular check up -- told my doctor that I was doing pretty good -- well 'til I got there ;o).... they lowered my 02 for my 6MW and I had trouble finishing the course they way I like to.... I made it but it did a number on me. It was a little worse than the last one (and what would one expect without the normal level of 02), my echo was about the same, blood work showed I was still alive... He asked how I had been doing and with the change of seasons it's always difficult for me so I said: "doin ok on the whole but once in a while I feel crappy" -- he came back with "well, it seems to be a consistent crappy"... Guess that means I'm doin pretty good, not too bad either *;*. After this question and that answer, we were done and I asked when I needed to come back -- he said 6 months -- 6 months... I've graduated to 6 months whoo hoo.... I could hardly believe my ears. When I started all this with PH, I was going to The Clinic every 2 weeks for close to a year then I made it to once a month, then after a few of those I finally made it to every 3 months and last year I graduated to every 4 months!!! I've been on Flolan for 6 years and will be starting my seventh year the first part of January. This is a feat, a hoop-la situation -- don't really know what that means but it sure sounds good. I don't have to go back to The Clinic for 6 months la la la la la... I'll just be going to Cleveland for Support Group Meetings -- what a treat.

On October 10th, we had our Pittsburgh PH Support Group meeting, which was held at AGH and they put on a PH Jeopardy game -- lots of fun for that one. I announced about HR 6568 passing in the house (at the August meeting we signed letters to be sent to our Federal Reps) and that now we have to contact our Senators and ask them to co-sponsor the bill. We had about 60 attend that meeting. We really did have a good time, another Happy Day.

That weekend Tom's oldest brother died -- a not so happy day. Although it was nice to see family again, it is not always so under these circumstances. The death of a loved one is always difficult and very emotional. Somehow though, those memories bring back joy as well as tears. "Andy" was 85, he was Tom's big brother and taught him a lot and was there for him while growing up. The stories I heard -- some would make you blush, others would make you fall on the floor laughing. Andy had a bout with cancer a number of years ago and had it beat, or so they thought. His death was unexpected and he did not suffer -- and that is very important. His wife died 3 years ago and they will once again be together, they were an exceptionally close couple. We went down for the viewing and the funeral -- I called my 02 company and they went out of their way to accommodate me and my needs for that overnight trip. You know how we PHers live a "just in case" life now. We need this, just in case, we might need that, just in case -- the list goes on. It was nice seeing everyone again and it seems the comment was, we only see ALL of us when someone dies. They are thinking of having a summer family reunion as they did many years ago.

The day of the funeral I didn't feel too chipper, my ear was bothering me but I didn't say anything. I waited until I got home, called my PCP in the morning and they had an opening in the afternoon. I went to the docs office (a wow kinda situation that I won't mention here), saw the doc, I have an ear infection, scratchy throat, so he wrote a script for a Z pack and I was good to go. I came home and semi collapsed. I was beat and for once I was glad Tom didn't come over. He had some catching up to do.

Yesterday was Nolan's birthday -- my tradition is to call the kids on their birthday and sing that wonderful song to them... my voice is terrible but they politely listen and say Thank You Granma when I'm done. I use to have a pretty good singing voice -- that was pre PH.... now I'm lucky that I can almost hit those high notes ;o). Tom came over and we both took naps in our respective recliners. Another Happy Day.

This morning Kevin called (Nolan's Dad) and said they were going to have cake and ice cream and thought they would come to my place to save me from going out in the cold, especially when I was on cold meds. Sounded good to me ONLY my dining room table was still stacked up with 'stuff' from the Pittsburgh meeting, the trip to Altoona -- I'm a pilot... I pile it here and I pile it there -- but usually on the dining room table. A good excuse to clear it off, which I did. The family came -- we all sang happy birthday and Nolan just beamed... he was sooo excited -- it was his special day and another Happy Day for me. Oh, and they all got together and moved my table -- extremely heavy -- put my hand made braided rug under it (something my Mother made) and moved it back. Only been sitting there rolled up for a few months... Hey, I'm getting there... tomorrow is another exciting day -- blog to follow, maybe *;*

This Thursday is the Mercer Area PH meeting -- Congressman's aide will be coming -- he called and had to cancel due to another commitment in Erie. I know his legislative aide and I am excited about meeting her, we've corresponded often over the past few years about different PH political issues. Friday is a "health fair" of sorts put on by our local State Rep and that's right in town here, so again, I'm good to go, we're setting up a PH table. So glad I have that Z pack.

Well, Jen, I hope this covers the blogger catchup, fingers are getting sore I typed too much but I am way behind in doing this and I need to get back on track.

Hugs to all -- and smile, it's contagious.

ME

A Slap Stick kinda day

2008-09-06T11:22:00.003-04:00

Ya know when you have one of those days like you think you can do something a little extra. Well, yesterday was one of those days. I got up, felt pretty good and thought to myself -- self you need to do something today.
As some of you may remember I moved from the second floor down to the first (New Year's Eve) and I don't care if you move 500 miles, 1500 miles or from the second floor down to the first -- a move is a move and it's very time consuming and physically exhausting especially for those of us with this dastardly disease. Boxes have to be packed, boxes have to be moved, boxes have to be unpacked. I did have the advantage of being in close proximity from my move - from - to my move to and I guess my "helpers" figured... it's all right there is no rush... WELL, let me tell you, I want my "STUFF" down here.
I was lucky in a way, when some came over they would bring a box or two down and I would unpack and put the what evers away. That worked really well... when they brought a whole bunch of boxes down like at the initial move, I became a little overwhelmed and it took me longer. Noticed I was under a lot of stress then...
Anyway back to what I'm about to tell you. Yesterday morning I thought I want "that area" over on the other side of my bed to be a little sitting area -- it's a big room BUT that meant I needed to move my rug at the end of my bed to beside it. WELL, that rug is also under my clothes racks -- my 2 makeshift closets -- those tubular kind of racks that you put together -- they are on wheels so I figure, just roll them over and go for it.
Needless to say I should have taken the clothes off first, but I didn't, I wanted to do it the easy way so there I am trying to roll the end of the rack off the carpet, not be on the carpet while doing that and pull the carpet at the same time and not tip the clothes over. It didn't work out too well.... Darn 02 line kept getting in the way so I would scoot that over with my foot while bending to pull on the rug while trying to balance the clothes rack. It was a comedy of errors -- even got me to giggling. At one point I had one corner of the rack off the rug, had the corner of the rug and pulling it gently to get the other end and lost my balance -- luckily the bed was right there and I sat down... OK... let's look this situation over -- I have one clothes rack clear and free of the rug -- I have half of the rug clear and free of the second rack but right now I am balancing that rack and trying to get back on my feet. Ahhh, mission accomplished -- now let's gently start moving the rack a little -- oops the top part came apart and I am holding the weight of the clothes and trying to balance the other end... oops again, the other support fell off and down go all the clothes.... ok, so now it's easy to move the clothes rack.. have to pick up the clothes from the floor, throw them on the bed and move the tham ding where I want it. Oops again, the rest of it fell apart. I had to sit down and just laugh and nobody was there to appreciate what I was going through. All I could think of was those reruns of slap stick humor.
I put the clothes rack back together... move it out of the way... rolled up the rug and put it on the other side of the bed... WELL GUESS WHAT -- it's too big!!!! I was about ready to spit (what I say I want to do when I'm upset) when I decided I'll just roll up the end -- a little two seater is going there and will cover that part of it -- that is as soon as it comes down here -- been waiting 9 months now... see some of the frustration I've been going through :o(
In my head, this will work. I'll have the two seater sofa there, the wing back chair over there and I can sit and knit, read a book or watch TV -- this is the first time I've had a TV in my bedroom. I'm good to go. And if the kids come for a visit -- I'll open up that two seater and they will have a bed. My little sitting area looked perfect in my mind... can hardly wait for that stuff to come down here and it better fit the way it does in my mind...
Oh, then GUESS WHAT... forgot that my daughter had asked if I would watch the kids while she and Kevin went out for the evening. That usually means a sleep over and I thought -- got that space all ready for them... I have a couple of those roll-up put under your sleepingbag roll ups :o)
and put them in my sitting area -- got some extra blankets. The boys slept on the floor and Annette slept with me.
When they came for the kids earlier this morning Elizabeth (my daughter) said: "we'll get that sofa out of here today--she got it for their family room -- i's been sitting in my dining room since forever -- and that means when that is gone I can bring down my hutch and my fancy china... Whoo Hoo... I'm on a roll..
Thanks for listening and hugs to all.

Thoughts

2008-08-09T18:28:00.018-04:00

A phriend posted a blog about an acquaintance asking her how she felt about dying and not too long after that a close friend also asked her how she was really feeling, implying about death and dying. She answered with a spiritual response and her true feelings as being one of God’s helpers. I truly believe she is a gift from God and as such, she has given strength to many.

I was first thinking what a dilemma she was in. Trying to answer someone she didn’t know well about death and dying and also with one of her better friends. My understanding of this disease, Pulmonary Hypertension, is that without treatment you have 2 to 5 years… With treatment no one knows how long you may live. I have met people who have been on treatment for 20 years and I have met some who were born with this disease and are still going strong and they are in their 30’s.

I’m not sure if you know but I am on the PHA Help Line and I receive many calls from newly diagnosed pholks who are outright scared because they have been told they are going to die. This is a scary disease and they have every right to be scared. I try to reassure them, that without treatment they may die within 2 to 5 years; but with treatment, who knows – and also we could walk out the door and be hit by a bus. We are all going to die, that is part of life. Two guaranteed things in life – taxes and death.

Yes, I believe we should get our “soul rights” in order but I am a firm believer that I have Pulmonary Hypertension and Pulmonary Hypertension does not have me.

Too many people do not understand this disease, too many people fall victim to this disease but it is treatable with the right doctors and we have to remember that. There is no cure but it is doable.

Over 2 years ago I became the Support Group Leader for the Cleveland Area PH Group and as part of my agenda for one of my first meetings I included: The late comedian Jack Benny was once honored with a distinguished humanitarian award. “I don’t really deserve this award,” Benny said in his acceptance speech, “but then I have arthritis, and I don’t deserve that either. Thank you very much.”

At another meeting I quoted: Lynn Redgrave speaking for Bristol-Myers-Squibb who said: I want to die from eating too much chocolate or from exhaustion dancing the tango. I want to die of laughter on my 87^th birthday. But I refuse; I refuse to die from breast cancer. I want to die from something else. And that’s exactly how I feel about Pulmonary Hypertension.

So it’s not a question of whether we really deserve the things we get, like PH among others. The important question is this: how do we handle them? If we have grace, we can endure, and enjoy the unexpected ups and downs of life. Do I grumble about my health or am I grateful that I am alive. Should I cry because roses have thorns or should I rejoice because thorns have roses? Attitude and a good sense of humor will get you a long way with this disease but sometimes you may need a terrible crying towel. Some days you need to cry, to vent, and to let it all out.

Hugs to you all,

Merle

I want my old life back

2008-07-21T15:17:00.006-04:00

I just watched the PHA 2008 Conference Video. There was a newbie there who said "I want my old life back." Those words hit me like a ton of bricks. It's so very true, unless you grew up with PH, the adjustments you have to make are not fun and usually not too nice. The tears you shed when you do that stinkin thinkin. The woulda, shoulda, coulda life we use to live and the life we live now. I saw small children with the Flolan pack -- that just isn't right, no child should have to endure that. But look at them, look at how they get about. It's just awesome. I have heard that some children out grow Flolan and are able to go onto another less invasive treatment. Woulda, coulda.... I'm on Flolan.
I would like to be able to pick up my grandkids -- well the smallest one anyway -- he sometimes climbs up on my lap but he's getting to be a big boy now so that won't last much longer. Actually, I would like to be able to pick up a gallon of milk, but I can't, it's too heavy ~ I would like to dance, sing, all the things I could do before. I would still like to be able to do them. But I can't, as she can't do what she had been use to doing and she is learning to adjust as we all have. Now coping may be another story, that is not as easy. You know one of those easier said than done situations. With a lump in her throat this newbie said she is learning about this disease. I call it the dastardly disease and I have learned how devastating it is -- she will. And I don't want to imply how bad it is but it is bad and for some worse than for others. With the proper treatment, PH, PAH, IPAH is doable. You can live with it, you can survive. I am reminded of those who have had it all their lives -- they are survivors too; they had to learn to adjust and cope.
I am fortunate that I now have many phriends, those who also have this dastardly disease. Those who have learned how to adjust and how to cope. The caring that goes on in the ph community is unbelievable and awesome at the same time and it seems we are all at different levels of adjusting and coping.
And I loved those "I'm a little SOB" shirts. That kinda says it all.
The closing for the video stated: "Dedicated to the memory of those who have gone before, to the spirit of those who fight back today and to those yet to come." Don't ever forget those words. There is always hope.
Hugs to you all.

I went out yesterday

2008-07-17T11:49:00.005-04:00

The title may sound a little strange but if you knew me you would know that doesn't happen too often. I may go to see my doctor once every 3 or 4 months -- and that's if I'm lucky -- or I will do what I call my toilet paper run once a month -- ya know, when you run out of toilet paper you run, well for me it's a trip in the car, to Wal-Mart; my monthly support group meeting -- that's it, that's as often as I get out. Well, this wasn't a doctor's visit, it wasn't the toilet paper run, it wasn't for a support group meeting. It was too meet a friend and have lunch.
Me go out -- wow -- whoo hoo. An out of this house experience.... *;*
Norma and I have been friends for longer than I can remember -- I have PH you know -- she moved away about 20 years ago and is now living in FL. Last year she came back for a visit and it was the first time in 15 years that the 3 of us got together. Another friend who also lives in FL isn't up here just yet. So Norma toasted for the 3 of us.
They say you are lucky if you have one very good friend -- well, I am blessed with many now but these two are those special ones. The ones you cry with, laugh with and almost get into trouble with. *;* The ones who hold those secrets that no one else knows. Your best buddies, your pals and just life long friends no matter how far the distance is between you.
From now on each year we will try to get together for lunch -- this year it will be staggered. And I guess this means I might get to go out again!!! Whoo hoo.
I'm a happy camper..... *;*

Hole In One

2008-07-10T08:24:00.004-04:00

Hi Pholks,

Just had to let you know. Well, a little background first. Every Sunday morning early, Tom goes golfing with a bunch of guys for a Sunday morning scramble. This morning (July 6, 2008) he got a HOLE IN ONE. He's so excited, some of the guys who have camera's on their cell phones took pictures of him picking up that golf ball from the hole and I hope to get the picture of him doing that.... By the time he finished the round, or whatever you call it, everyone knew what he had done. The owner of the course said no one has done this in 7 years....

A couple of years ago the grandkids bought him a hat that says "My Grandpa got a Hole in One" -- he has never worn it -- it's a golfers thing -- but next Sunday it will be his crown. He also has a T shirt that says "I'm the Man" and he plans on wearing that.... *;* He's too funny -- he's a keeper; maybe not here, but he's a keeper.

Well, I just had to share the good news. Hope you all enjoyed your 4th of July weekend -- ours was a hit. ;o)

HAPPY FATHER'S DAY

2008-06-15T11:41:00.000-04:00

When I was a boy of fourteen, my father was so ignorant I could hardly stand to have the old man around. But when I got to be twenty-one, I was astonished at how much the old man had learned in seven years.
- Mark Twain

Saga of the Ground Hog

2008-05-30T10:37:00.002-04:00

Today's the day. Tom got that darn ol' ground hog. It's a critter that's been pestering him for over a year now. A big fat ugly one too boot.
It invaded the back yard over a year ago and Tom did what he could to send it to the neighbors but he really liked his back yard. There is a deck off the family room to the back yard and that's where this awesome but ugly ground hog decided to winter... He dug a hole under the deck and would slip in and out as he pleased. Tom put up some boards to block off the hole but that little critter -- well, really not so little, dug a hole right beside it.
Tom got some cinder blocks, that didn't work. He (Tom *;*) told me how he thought about putting a flare under the deck but he figured with his luck it would start the house on fire... Well, our friends say if we didn't have bad luck we wouldn't have any at all.... enough said on that one. So the flare idea was out. Then he thought about using a shot gun and figured that would just put holes in the deck floor and he still wouldn't get that critter. Didn't want to take that chance either. So as a last resort he got out the 22.... it was kept by the back door, you know, just in case.
Well, that critter had a summer resort toward the front yard on the side of the hill. Wouldn't surprise me one little bit if he didn't have a connecting tunnel. So depending upon the day, the rifle was either at the front door or the deck door.
I would picture in my mind the part about the flare and the house going up in flames and not just little flames but one of the whoosh flames all over the place or him with the shot gun and going pow, pow pow and no more deck to sit on to watch the leaves on the tress as they grow -- I so miss being out there in the country but I do enjoy intown living too so I shouldn't complain. Each week Tom would tell me something new about how he missed that ground hog. (I'm a better shot than he is and he said I should come out and do it LOL) I was the one the guys would ask to site in their rifles before hunting season started -- having two older brothers who were avid hunters might have had something to do with that. Anyway, each week would be a story to tell of the "one that got away".
Tom called just a little bit ago and said he got that critter. It was a bigun -- as the saying goes. So fat it hung over the shovel that he used to remove it from the premises... I told him he should have made possum soup and he said it wasn't a possum and I said well, it's a cousin....
Now we'll just have to see what the latest adventure will be out at the "ranch".... probably just cutting the grass. That has always been an adventure for Tom...
As TW would say "laffin"
Later....

Whew ~ What a weekend

2008-05-20T07:45:00.006-04:00

Early Friday morning my daughter called and had that tone in her voice -- you know the one. Mom, have I got a deal for you -- only this time she didn't say that. And that's a saying that gets used often in our family and when used, a BIG smile comes to my face. Anyway, she asked if I could watch the kids after school. I said no problem. Then she said Kevin, her husband, my son-in-law had been in an accident. SAY WHAT!!! I knew he had gone to TN on a business trip and asked if he was o.k., then I asked what had happened. He had a broken bone, I'm thinking maybe his arm or leg something sort or minor and that he was o.k..... he was alive.... hmmmmm I'm thinking. He's alive, I could hear the concern and worry in her voice.
Kevin and his brother were riding their motorcycles (they drove them to TN from PA) and Kevin hit some gravel on a sharp curve, skidded and went down--head first into a guard rail. The guard rail saved his life as the cliff was over a 500' drop. He broke his hip in two places and his ribs were badly bruised. Elizabeth, my daughter was going to fly to TN and help Eric (her brother-in-law) drive Kevin et al, back. The plan was to rent a van to carry Kevin and a trailer to carry the bikes. Of course, I didn't learn all this in that initial conversation but during the day, the call backs and calls from her sister-in-law. I tried calling Kevin on his cell phone but got his answering service. Bummer. Through these many back and forth calls, and I did manage to find which hospital he was in (hunted and searched on the www) I learned they would be leaving Saturday morning to drive back. Whew.
Annette walked over to my house after school, Jerod was staying with a friend and I picked up Nolan around 5ish from day care. During all this rush and fuss, Jerod picked up Nolan's clothes sooo Nolan had Jerod's. Had to drive Annette home where she got the proper outfits for a day or two and some more "items" of interest for herself. Her plans were to go to the church that night for "dinner and popcorn and pizza". A monthly event and she would be staying overnight with a friend after. So that left me and Nolan, the 5 year old. We had a great time. I think I was a 5 year old in my former life ;o) We watched Jurassic Park for probably the 20th time, I made popcorn and he could tell me what the actors were about to say for almost every scene -- he's just too much. A couple of times he had to sit close to Grandma but most of the time he was right on top of the TV screen.
Saturday comes and he helps me with some chores, watches some TV (he's not allowed to watch too much TV at home -- but I find it almost the perfect babysitter...) we colored and his pictures were put on the refrigerator and mine were put on the coffee table WHOA... We called his Mom and Dad who were en route to heading for home and I heard Nolan tell his Dad -- "I have everything under control" and gave him (Kevin) a thumbs up. I just love the way their minds work. Tom came over towards the end of Spy Kids (another favorite) and then we -- Tom and I had to make plans to pick up my brother at the Pittsburgh Airport. Ken (my brother) would be coming for a week long visit. I haven't seen him in almost 5 years as he lives in CA so with all that was going on my mind was in a whirl. More back and forth calling. Do I take Nolan with me to the airport... or should he be brought to the Jerod's friends house. The final decision (without winning any money) was to have Teena (Eric's wife) take him home and just wait until the TN 3 would be home. Tom and I had to leave by 10 p.m. and they, the TN 3 thought they would be back by 10:30 or 11 p.m. Close but no weo. So Teena came and got Nolan about 7:30 so he would be in bed by 8 and have a good nights rest. Sounds like a plan to me.
Tom and I get "things" ready, you know my just in case stuff. Medicine packed and in it's cooler with extra ice. Fill up my portable oxygen tank, take along a spare "just in case". The usual things I need when I walk out the door. I'm just glad we weren't going on a trip -- then imagine all the extras... Anyway, we load up the car and off we go. Stopped for gas "just in case" and hit the highway in style. It's take about an hour and a half to get to the airport from my house and there is always some kind of construction going on on I-79 so it was decided we would leave about 20 minutes early. We're heading down the highway and the moon is full, yet the sky is clear and there were large puffs of clouds here and there, the silhouette of the mountains on either side. It was an awesome site. The dark sky in the background, the man in the moon looking down on us; the bottom side of the clouds being dark... I don't ever remember seeing such a site. As my Mother would have said, "A site for sore eyes"... Something that make you go, whew... A Hallmark moment if you will. Tom and I chit chatted on the way down, something we don't usually do and the time just flew by. We got to the airport, not really too early but there was no construction going on so no hold ups. Now coming back may be a different story as we noticed there was more traffic heading north than south.
The plan was (via phone calls with my brother) that Tom and I would drive around the terminal until my brother came out. His plane was to arrive at 11:55 p.m. such a wonderful hour and we got there at 11:20... Oops, just a little bit of a wait. Now you have to realize that before 911 you could park on the berm of the road and watch the planes take off and land -- not any more, so we drive around and around and around. There is this one "stop" sign so I told Tom if no one is behind us, just 'stop' there until someone does come behind us... that worked only twice. Finally, the car ahead of us stopped so we had to stop, there was the Highway Patrol and local Police everywhere to make sure the traffic kept flowing. I asked this one lady who wasn't waiting with our previous drive by if she was coming in from Denver -- she said YES. Yippee, the plane was in on time. Down the ramp a way I saw this "guy" with a beard.... hmmmm.... so what the hay, I yelled out Ken and he waved back... We only drove around the terminal 5 times, that must be a record... Ken only had a carry on and one suitcase. We put those in the trunk and off we were, headed for home. That's when the fun began, I tell ya, brothers.... my oh my. We got home about 2 ish and we were in bed by 2:30 a.m.
I'll write about the visit but my fingers are getting wore out about now so: TO BE CONTINUED....

Just Not Sure

2008-05-13T20:01:00.007-04:00

Well, a little bit ago I received a phone call about doing a brief survey. I usually listen to their spiel to see if I'm interested or not before I hang up. :o) I was asked if I was a registered voter at this address. Ahhh a political one, my cup of tea. I replied, yes I was a registered voter. I'm thinking with all I have been through in the political realm over the past several years, I may be able to put in my two cents worth somewhere in this conversation. He asked if the man of the house was home, I said no -- I didn't lie -- just because he's not allowed to live here... and besides, what does that have to do with the price of peas in China? Then he asked if there was a man who lived here or did I live alone. Hmmm. I answered I lived alone, he said something I couldn't quite understand and I don't think it was thank you and hung up...

Oh bother, did I make a mistake, should I have lied and said "he" was at work. Tom would be here tomorrow, I could have told a little lie, maybe. But then again, I have PH and my thinker wasn't working that fast. You know, lack of 02 to the brain -- the thinker doesn't work as fast as it should sometimes and today is one of those days.

Well, now my brain is working overtime. Am I getting paranoid, do I have something to worry about. Will bad guys come in a rob me or whatever... and I'm thinking the whatever. Get a grip girl. The 02 is kicking in and I'm thinking. So I called the local police -- it's after hours and I got a recording -- if this is an emergency, please call 911. Dah Of course, there were extention numbers for reporting this and extention numbers for that and to call between the hours of... Give me a break.

I remembered years ago there was this guy who would call and ask you to do a survey and then it ended up being an obscene phone call. Does this give you any indication of my thoughts. I got that call and he really scared me -- I am so guliable, I fell right into that trap and that time I called the State Police because then I lived out of town and the number was listed in the phone book. So I looked up the number of the State Police -- would you believe they aren't listed unless you want to report a Homeland Security or Terrorism tip, Missing Person, Wanted Person etc... again it would be a 911 call and I don't think this call would qualify.

The thinker is still working overtime and I looked at my phone -- I now have caller ID (remember I gave up my cell phone so I could get long distance and caller ID) and guess what -- it says unknown name and unknown number. Hmmm, paranoia kicking in again. What's that saying about luck -- what did my doctor say about Murphy's Law and me...

My State Rep lives a couple of blocks from here and I've known him for over 20 years -- actually we use to work in the same "field" before he went into politics. Anyway, I look up his number and call him... got his recording and left a message. I thought maybe he would know if there are any political surveys going on right now. That would help ease my mind. The primary is in WVA tonight, just south of here and PA has already had its primary so why this call, why tonight. I guess I'll have to be patient and do all my calling tomorrow. Bummer

Surprise, surprise, my son-in-law stopped with my grandson, they were out getting ice cream. So I told him my story of woe and he said with most surveys they ask for the man of the house because men are more open. They will give their salary, rent or mortagae info. All kinds of "stuff" that women won't pass out freely. Was he trying to calm me down. It helped some but not much.

I've done all I can for now and I'm not going to worry about it any more tonight and right now I'm not even sure if I'll do any calling tomorrow. This is a very political year and with all that is going on with Obama and Clinton, maybe it was a legit thing.... but maybe not. Just not sure.

HAPPY MOTHER'S DAY

2008-05-11T09:39:00.011-04:00

This is an email that comes around once a year. I am so glad it came today -- enjoy.

This is for the mothers who have sat up all night with sick toddlers in their arms, wiping up puke laced with Oscar Mayer wieners and cherry Kool-Aid saying, "It's okay honey, Mommy's here".
Who have sat in rocking chairs for hours on end soothing crying babies who can't be comforted.
This is for all the mothers who show up at work with spit-up in their hair and milk stains on their blouses and diapers in their purse.
For all the mothers who run carpools and make cookies and sew Halloween costumes. And all the mothers who DON'T.
This is for the mothers who gave birth to babies they'll never see. And the mothers who took those babies and gave them homes.
This is for the mothers whose priceless art collections are hanging on their refrigerator doors.
And for all the mothers who froze their buns on metal bleachers at football , hockey or soccer games instead of watching from the warmth of their cars, so that when their kids asked, "Did you see me, Mom?" they could say, "Of course, I wouldn't have missed it for the world," and mean it.
This is for all the mothers who yell at their kids in the grocery store and swat them in despair when they stomp their feet and scream for ice cream before dinner. And for all the mothers who count to ten instead, but realize how child abuse happens.
This is for all the mothers who sat down with their children and explained all about making babies. And for all the (grand) mothers who wanted to, but just couldn't find the words.
This is for all the mothers who go hungry, so their children can eat.
For all the mothers who read "Goodnight, Moon" twice a night for a year. And then read it again. "Just one more time."
This is for all the mothers who taught their children to tie their shoelaces before they started school. And for all the mothers who opted for Velcro instead.
This is for all the mothers who teach their sons to cook and their daughters to sink a jump shot.
This is for every mother whose head turns automatically when a little voice calls "Mom?" in a crowd, even though they know their own offspring are at home -- or even away at college.
This is for all the mothers who sent their kids to school with stomach aches, assuring them they'd be just FINE once they got there, only to get calls from the school nurse an hour later asking them to please pick them up. Right away.
This is for mothers whose children have gone astray, who can't find the words to reach them.
For all the mothers who bite their lips until they bleed when their 14 year olds dye their hair green.
For all the mothers of the victims of recent school shootings, and the mothers of those who did the shooting.
For the mothers of the survivors, and the mothers who sat in front of their TVs in horror, hugging their child who just came home from school, safely.
This is for all the mothers who taught their children to be peaceful, and now pray they come home safely from a war.
What makes a good Mother anyway?
Is it patience? Compassion? Broad hips? The ability to nurse a baby, cook dinner, and sew a button on a shirt, all at the same time?
Or is it in her heart? Is it the ache you feel when you watch your son or daughter disappear down the street, walking to school alone for the very first time?
The jolt that t takes you from sleep to dread, from bed to crib at 2 A.M. to put your hand on the back of a sleeping baby?
The panic, years later, that comes again at 2 A.M. when you just want to hear their key in the door and know they are safe again in your home?
Or the need to flee from wherever you are and hug your child when you hear news of a fire, a car accident, a child dying?
The emotions of motherhood are universal and so our thoughts are for young mothers stumbling through diaper changes and sleep deprivation...
And mature mothers learning to let go.
For working mothers and stay-at-home mothers.
Single mothers and married mothers.
Mothers with money, mothers without.
This is for you all. For all of us.
Hang in there. In the end we can only do the best we can. Tell them every day that we love them. And pray.

HAPPY MOTHERS DAY

A Hodge Podge of feelings

2008-05-04T18:52:00.004-04:00

I probably shouldn’t be writing this right now as I don’t feel too swift but this morning my mind was just whirring and I said to myself… self, you should write this down. I will try to remember but you must remember that I have Pulmonary Hypertension and sometimes the thinker just doesn’t want to think and things just need to be put on hold.

Yesterday I went over to my daughter’s house for a cook-out – the first of the season and it certainly has been a mighty long winter. It was good to get out and “see the sights”. Well, much to my amazement, SPRING HAS SPRUNG, the grass has riz [cut once and needs cut again], I wonder where the daisies is [well, the dogwood is in blossom, the lilacs are out, the trees are spewing forth their leaves amongst all those blossoms – and the colors are just gorgeous – hot pinks, whites, soft pink, the leaves are a granny apple green and some are a deep greenish red – don’t ever remember that before – and mustn’t forget the Japanese Maple – they have that deep red color and are just sharp. My neighbors have one in their yard and I think they also have a blooming quince – my Mother would know, she knew all the names of the flowers and trees.], the bird is on de wing [and I saw a robin this morning on my porch railing with such a big belly that I’m sure within a day or two there will be little chirpers’ singing a song of joy and happiness] ain’t that absurd, I always thought the wing was on de bird… ;o)

It was a little chilly but the spirit of those who were at this impromptu cookout was warm and that’s what counts. It was a gathering of folks from the neighborhood. The kids were sent to knock on their doors and say Mom and Dad are having a cookout, come on over. They cooked burgers, hot dogs and had grilled shrimp, potato salad, baked beans, cheese and pepperoni tray and a veggie tray. I ATE TOO MUCH [I didn’t have a hot dog] but it was most enjoyable. Tom and I decided to go in separate vehicles as he had to stop at the hardware store and he would meet me at our daughters house as it's on his way home -- he would have to backtrack to bring me home; after a while, it was time for me to head home – Tom went his way and I went mine and we left just in time – by the time I got home it started to pour down cats and dogs [I’ll have to look that up and see where that expression came from] but I doubt if it put a damper on the festivities.

Now that the good weather is here I plan to get out a little more often.

More is Not always Better

2008-04-25T21:44:00.004-04:00

I guess the reason I am writing all this is because being symptomatic does not always mean an increase in meds is needed. More is not always better. In most centers across the country clinicians are no longer doing routine RHC's annually since in most cases they yield no significant data unless you as a patient are showing signs for concern. They are still the golden rule for diagnosis but echo measures seem to be quite capable as well as 6 minute walk distances and other PFT’s as needed for updates to know where the patient is – is the progression progressing, is it stable. Titrating a patient’s medicine is based on how they feel which is a reasonable thing to do as many clinicians adjust medicines based on symptoms of the patient. This is the art of clinical practice where knowing a patient and the limitations of tests and finding the balance that makes patients feel better is the measure of a good clinician.

PHers and especially “newbies” need to know that sometimes all symptoms are not directly related to pulmonary arterial hypertension; and that being on too much Flolan or other PAH therapy, may look or feel exactly like being on too little. The effect of too much drug causes a high output cardiac failure. This is sometimes only detectable on right heart catheterization and I tend to have a history of sometimes not knowing what my body is telling me. That’s why I trust my doctor and ask him lots of questions.

I want to back track a bit. I hadn’t been feeling well – having trouble breathing, got a little sob when I would move about – and that of course is short of breath, so I called my doctor. He scheduled an appointment to see a cardiologist on Wednesday and then an appointment for a RHC on Thursday – unless I could get in earlier. A RHC was pretty much standard operating procedure for me as I’ve had a number of them. Probably 15 or more over the past five plus years. I even remember my first one. I was wheeled into the OR on a gurney and then wheeled into the ICU when they were done. I do remember feeling out of sorts as the unknown is always scary and when they mention an invasive procedure and the heart in one breath... It is just out right scary. After that first one, I know what it is about, I now walk into the OR, have the procedure and walk out and go home. Well, that’s the plan.

The weekend arrived and departed, Monday came and went but come Tuesday morning I got a call from my nurse who said there is a bed available and to come to Cleveland as soon as I could but don’t rush – I had time to shower… I called Tom and within less than an hour we were on our way. I am a “good scout”; I have learned to be prepared. All my “just in case stuff” was loaded into an overnight – actually is was my old computer case – and my son-in-law recently gave me his old lap top when he bought a new one – and that is now on my “just in case” list, it came with us and we were good to go.

The car was loaded up – all that just in case stuff. My back up medicine (Flolan) mixed and ready to change at a moments notice, extra ice packs (plus the large one to keep those frozen), the usual stuff in my “six pack” cooler – the Hickman line change, back up batteries, the spare pump, back up supplies if I needed to clean or change my site… quite the array of goodies. And that was just the cooler. I also need extra oxygen tanks Just In Case something happens to the one I am using, like running out of air. When I walk out the door the items I carry would be similar to what a “normal” person uses for a week long trip… Whether I’m gone for a day or a week, I take the same amount – well except for clothing, THEN we would need another case to lug around. I always carry and extra set of undies when I go anywhere and I am so glad I do. I have had to use that JIC (just in case) set several times when my stay ends up being more than the trip over, you know, and added day or two. *;* Oh, must not forget the Revatio/Viagra another JIC.

We got into the car and Tom noticed the gas was low… well go figure… he also mentioned that we should take a quick trip through the car wash… since spring has sprung I had those little furry things falling from the tree onto my car (along with some bird poop droppings—they’re baaack) and there was some left over snowy/salt splattering on the side of the car. Tom started the car and there was a POP sound and after several tries, the car finally started. This never happened before – is this an omen… We went to the car wash and he chose the one with the extra under carriage wash setting. We drive in ~ and stop. The wash starts but only on one side… we both looked at each other with big grins. Luckily the owner was right there. So we drove around again – the owner gave us the money, pushed the button and off we went again. Same thing happened, this time Tom and I really laughed and said how the undercarriage would be really clean. The owner came, pushed a few buttons and mentally I’m sure kicked a few things and told us to go around again. This time we went into a different stall and low and behold, it happened again… the owner came, checked out this and did that and finally it worked and the car had a nice warm bath/shower. The owner stopped us as we left and said we should have the cleanest undercarriage going…. *;*

We got on the road, had a stop sign and the car shut off…. Next stop light, it shut off again. A message came on the dash to service engine soon. Tom said that’s it we’re going to the car dealer. Luckily it was only a mile up the road. I saw guys I hadn’t seen in years (remember, I don’t get out much), it was like a reunion. The owner came through the service department, the manager of the service department was the same from years back, one of the office “girls” came out for a question to the manager and I knew her too. It was great seeing people I hadn’t seen in 5 years or more. Even under the circumstances, I was made happy. They took us in right away knowing I had to be in Cleveland, put the car on “that” machine that reads it’s insides (reminds me of that gizmo on Star Trek that “doc” always used); did a little of this and a little of that; reset the whatever they are; took it for a run and said we were good to go. Guess what, they think it was the “shower” got some wires wet and the car acted up. Ask me if I’m surprised….

We made it to the Cleveland Clinic, went to registration, got right in instead of the usual delay, my room was ready, I was hungry so we stopped at their food court for a “to go”, and off we went. I was to go to H22. Now I know H means hospital and I am usually on the ninth floor as they specialize in heart care and that is usually where PH patients are sent… BUT no, when we followed the signs it said Intensive Care Unit – Heart Failure. Say What!!! Why was I going to ICU… then I remembered, when you have a swan in your neck and you don’t go through SOP (standard operating procedure) you have to be in ICU – their policy. I was told, we would get it done and I would be on my way home again - by early evening. May not need that lap top to communicate with my phriends after all…

There was a staff meeting, someone else needed a procedure and about 5 ish the doctor came in did the normal stuff, painted my neck, put drapes all over me and the fun began. A poke here, you will feel pressure there, can you feel that (well dah), another prick, now that’s better. I mentioned I could feel it in my arm – wrong turn down the tunnel… He had trouble getting past the Hickman line, I finally felt a flutter in my heart and told him he was there… felt another flutter, my legs started to tremble, I was getting nervous and I try so hard to be a good trooper but the trembling wouldn’t stop… They then brought in an x-ray machine to make sure it was in line and not hung up on the Hickman. I’m thinking hmmmmm…. They start doing their readings and the next thing I know is the PH Fellow is called…. I’m thinking again hmmmmm. My legs are really shaking now but I was able to keep my upper body from shaking and I guess when you have something in your heart (besides the Hickman) and there is a person on the other end of this catheter moving it, you tend to do that – you don’t want to move and upset the apple cart. Although my “mean” pressure was in the low 50’s, apparently my cardiac index and output was waaaay off. I was at a toxic level of Flolan – this is not good. Actually this is very bad… definition of toxic – poisonous, deadly, lethal, noxious – just to name a few. I was told I had to come down on Flolan and come down now. They would do the titration now and continue through the evening if necessary so I could go home by morning. Didn’t really like that thought but it sounded like a plan. They would titrate me down half a nannie every hour on the hour along with a blood draw (this would give them the cardiac index and output) and also my BP reading. I hate those automatic blood pressure readings – they are too tight and really hurt (I still have the bruise). It was 169/95 and my normal is 110/60. After the first one, they put it on my lower arm and that felt a little better. I then got a child’s BP cuff and that was much better. I went down to the 150’s and once I made it to 110 and another time to 115 but for some reason it went back up to the 150’s or 160’s…

I hooked up the lap top and started chatting off and on with several of my phriends – they certainly help me stay sane. I didn’t like what I knew was going to happen and was happening. We chatted between “sets”.

Did I ever mention that my doctor is going to change Murphy’s Law to Merlie’s Law – because of what I have been through over the years. It really is appropriate… If something is going to go wrong, it will and it will happen to me. There was a debate or discussion about the titration. ICU’s policy is no titration after 7 p.m., they had to call my doctor and he mentioned that since we were coming down it was different. ICU’s thought is, most of the doctors have gone home for the evening and couldn’t be reached in a timely manner if needed. It was decided since the Fellows were close by and on call, the procedure would begin. About 7 o’clock the first blood draw and the first ½ nannie down…. An hour later, another ½ nannie down, a blood draw and BP reading. The results of the first blood draw showed that I had come down to 2.9 from 3.8. The goal was to reach 2.5 to 2.8. That would be a safe level. The next set showed I went up, the next set showed I went up again 3.86 then to 4.38. I was going the wrong way and of course getting a little anxious, this I am sure did not help my situation. Eleven o’clock came and it was time to take my Revatio – another BP reading (going up anyone), a blood draw (all they had to do was turn the spicket from my Swan) and ½ nannie down on the Flolan. That reading showed I went way up and the Fellows were called (5.05 to 7.29). No more Revatio. Apparently, the Revatio and the Flolan were creating a major problem and my index was so high they were very concerned. I didn’t know any better so I was just being me. The doctor asked me some questions and said she would be close by “Just In Case”. Oh how I love that phrase. My index went up, the index went down and then to be different, it went up again. At 3 o’clock, the Fellows were called again and this time they played with the Swan, they also did a wedge. The x-ray machine was brought in and “pictures” were ‘took’. They again wanted to make sure the catheter had not moved or may have slipped out of place… like where would it go. They stopped going down on the nannies but they still took the blood draw. By 6 a.m. I was at 6.57 – not good.

I’m sure I was the buzz of the floor by Wednesday. Those nurses who came back on duty asked what I was still doing there… We joked about it often. It was almost a betting game – would my index go up or down. We tried having me lay still for at least a half hour before each set – we tried me sitting up to see if that would be different – it was but then I would yo yo again. My PH nurse came for a visit, my doctor also came – and the Fellows also stopped in off and on during the day. It was decided that my body needed a rest and also gave us all time to go over all those figures, but we started titrating down again. The regimen was to be started again but only the draws would be every 2 hours instead of every hour. BP was still every hour and I was so exhausted, I slept through it all, I didn’t even wake up for the blood draws or the BP reading until 6 a.m. on Thursday. The first thing I asked was what were the readings… One was 6.8 and the next was 4.3. Well at least now I am heading in the right direction. I was starting to get symptomatic, having trouble breathing, was I going down too low… I even had trouble talking… I really didn’t want to come down any more on the Flolan. My doctor came and said the last reading was 4.3 and I still needed to come down… they had just finished a reading that he hadn’t seen and it was 2.8 so I told him – he said if that’s the case, I could go home. It was and I did…. Yippy ~ Tom was called and came and got me.

So now, I am off Viagra/Revatio which I had been on for about 5 years and my understanding this may be a temporary thing. I am down on my Flolan and I’m not sure if this will be a temporary thing or not. I am still symptomatic and at this point we’re not sure if it could be a “panic” attack or if some other little disease may be acting up. Panic attack – stressed out – who me – why would we think that!! Last fall I was tested for asthma and it seems I have that, never did before – don’t like those meds but hey, who am I – just the patient. Could also be allergies, it’s that time of year and since PH I have always had difficulty with the seasonal changes in nature. Winter to Spring, Spring to Summer to Summer to Summer (very difficult) and Summer to Fall. I don’t seem to have too much trouble from Fall to Winter. I have always had trouble with humidity and I guess that’s not too common with us PHers but it does happen. I also wonder if it could be the barometric pressure – Mother Nature is such a wonderful gal and we must not forget Merlie’s Law.

It has been a week now since this happened. I am more tired than I was before but I am sleeping well through the night and even have an afternoon nap. My fingers don’t feel like stuffed sausage anymore, my eczema seems to be clearing up – so I’m not going to complain. If my heart is in good working order, I’m good to go.

April 25, 2008

I guess I should have mentioned in my "little" epistle that one of the reasons I asked for an increase in my Flolan over the years is that I was not having side effects -- no jaw pain, I did have some flushing, feet didn't hurt... I was told, or thought that if I didn't have jaw pain and the other side effects then I didn't have enough Flolan besides, I was symptomatic. Just made sense to me; no jaw pain, having trouble breathing, getting sob when you walk from one room to the next -- need more meds. You know that old saying, no pain, no gain. Well, we are all unique in this phamily and as I stated, we all react differently to our PH therapy. We are still trying to figure me out. Is it asthma, could it be allergies or is it something else altogether different. Stay tuned for any updates *;*

April Fool's Day -- I think not

2008-04-01T21:13:00.002-04:00

Today started off pretty typical for a Tuesday. Groceries were delivered around 8 a.m., I can't believe I was just getting up when they came. I put what needed put away and checked my "mail". Not too much this morning but I am so far behind in getting it either sent on or deleted, that I should be shackled to this machine to get it done. It's almost like a chore and I so love this little box that brings so much joy into my life. I chat with phriends, I e-mail so many, I hunt and search on the world wide web. I would be lost with out it.

I decided to change my site -- that usually takes some time and I want to start putting on notes about the meetings. Well, naturally, I ran into some complications so I called tech support, they helped and I was on my way again to changing things when the doorbell rang. It was the cable guy. *;* I had ordered a phone line through my cable company. It's only $2 more than the "regular" phone company -- well for 6 months anyway -- and I would have long distance, caller ID and so much more. Yesterday, I only had local calling. (See below - Incoming Call) I was excited because now I can call anyone, anywhere (in the continental USofA) and any time I so choose. What more could I ask for. I do have to give up my cell phone but I think in the long run it will be worth it.

The line was installed or reconnected or whatever it is they do and low and behold, the phone rang. My phone showed it was Tom calling. Wow, I could actually see who was calling me. I was like a kid at Christmas time -- a new toy. We chatted a bit, he said he would be a little late getting here today but that's fine...

The cable guy left and I went back to working on my site. Frustration, frustration, frustration. I decided I needed a break. Tom came, we had lunch and started watching TV -- pretty much our daily routine. But I am on the PHA Help Line this week so I had a few calls and of course, I usually end up at my computer helping someone find a doctor or maybe a support group; answering questions about PH or just listening to their fear and concern. This really is a dastardly disease and extremely scary when you first find out about it.

Tom left for the day and I thought I would try out my new long distance service... I called one friend in another town and she wasn't home, I called another friend and she also wasn't home. Bummer, my new toy worked but I couldn't share it with anyone right now. Then the phone rang, I figured it was a return call but no, it was a contractors service calling because I had signed up for a "prize" and although I didn't win, I got a courtesy call. She was very polite so I listened to her spiel. When she realized that I wouldn't need their services in the near future, she said "I noticed you answered the phone with something about a help line". Wow, I was surprised and a little amazed that she noticed that. A caring person. She asked me what it was about. I explained what Pulmonary Hypertension is and what the Help Line is about and a little about PHA. It almost seemed like she may know someone with PH symptoms. She asked could she have someone call me to inquire. I said sure, that's what the line is about. Patients talking with those who are either patients or someone who knows someone, a caregiver or family member or maybe a friend. She said God Bless you for doing this, people need people to care. Wow, kinda made my day. Come to think of it, she didn't even use the 800 number...

I think this is the first April Fool's Day that no one played a prank or said a joke or something. It was a very positive day and I don't get many of those. Maybe spring is coming.

Spring Has Sprung

2008-03-28T18:23:00.002-04:00

Spring has sprung, the grass has riz, I wonder where the daisies is.

This is something I remember from way back when -- there is more to it but for right now, that will do. As far as the grass has riz, well. At least I can see it now. The snow is mostly gone just patches of it left here and there and what we were suppose to get today DIDN'T HAPPEN. Yippy, Skippy... I am tired of being cold, I am tired of seeing cold -- it has been an exceptionally long winter and I am SICK AND TIRED OF IT!!!!!

The beginning of this month, the 8th to be exact, I was to have my first Support Group Meeting of the year. We intentionally skipped January because it is January and who knows what snow might befall us. Well, guess what, January was pretty decent but come the 7th of March there was this MAJOR snow warning. Suppose to be the biggest snow fall of the winter season. I had to call all those who responded they would come to the meeting and tell them it was postponed. I sent an e-mail to those I have e-mail addy's for and posted on the site. I had to call the Library where we meet to see what would be the next available date we could have a meeting, that ended up being the 22nd of March. Sounded good, the only problem with that date is, it was the day before Easter and some folks had plans.

Well, back to that major snowstorm. It was and I am soooo grateful that I postponed the meeting. The Cleveland area got about 20" of snow. It was a record breaker and the further west you went in Ohio, the more snow they got. Some of the members wrote and told me they had 4' snow drifts in their yard. I had mentioned to some that if I had to go by snowshoe, I was going to the meeting but when Friday came and I saw how dangerous it could be for others to travel, it was a no brainer -- we could have the meeting another day.

Then comes time for the new date. You guessed it, another snow storm only 6" this time. I had people call and ask if it would be postponed again but I had checked with the Cleveland area weather and they said by 10 a.m. the roads would be dry as the sun would melt most of the snow.

We had our meeting and it was good to see everyone again. I started off by saying, Happy New Year, Happy Ground Hog Day, Happy Valentine's Day and Happy St. Patrick's Day. So much had happened since we last met in December, I had 4 pages of notes. I expected 42 but had some cancellations at the last minute. Those that had colds didn't come as they didn't want to spread any germs around. I am thankful for that. We PHers have to be careful, we tend to "catch" things very easily.

This year we have a clean up crew and they did a great job. We have to wipe down the tables, vacuum the carpet and put out the trash. Does that sound like a sound.... :o)

Now I'll have to get ready for our May meeting *;*

Have a great day.

Another Super Tuesday coming right up

2008-03-03T11:08:00.003-05:00

I'm not sure if I want to say it's our right and privilege to vote or it's our privilege and right to vote. But either way, we need to VOTE. Some of our votes will wipe out someone else's vote but at least we are voting and have that privilege to do so. This is a great country many don't realize how fortunate we are.

Some will moan and groan about this is the way it should be, some will moan and groan that it should be a different way. It really doesn't matter how you moan and groan unless you VOTE and let your respective politicians know what you want and how you feel about a "situation" for lack of a better word; they will never know unless you tell them. And you need to tell them when they are elected. How do you feel about this legislation, how do you feel about a different one. They need to know, and we need to tell them.

Tomorrow is a way to let them know. Ohio, Texas and Vermont have their primaries and that will be a start to let them know WHO you want to represent you. The main election will be November 4th. Now that's going to be a day of infamy. I'm not sure if I'm excited about that or totally scared... there is a lot going on in this country right now. Moaners and groaners are in action and are being heard but are they listening?

We of course all want someone who cares, someone who will listen is also a key element; someone who will do what we want or need them to do. Someone who will guide us in the right direction; and when I say us, I also mean this country. Years ago I read a book and I think it was titled: P. S. You're Not Listening. It was about a special needs teacher who taught mentally challenged students. The main jist of the story is/was, sometimes we hear but we are not listening.... Good point. I try very hard to remember that.

Well, get out there and vote. Vote for your choice. Vote for what you believe is right. There are many countries that do not have this choice. That's what is so great about this country we don't have to agree and we can disagree with each other but we do need to VOTE. Let your voice be heard, chose some who you feel will listen.... You are a registered voter, right.

Sometime in the near future, I will write with what I want them, the politicians, to hear -- oops, listen to.

Why do we need leap year?

2008-02-29T17:06:00.005-05:00

Just happened to think about what today is... It's leap year, we should all be jumping for joy.

The Gregorian calendar, which now serves as the standard calendar for civil use throughout the world, has both common years and leap years. A common year has 365 days and a leap year 366 days, with the extra, or intercalary day ~ designated as February 29. A leap year occurs every four years to help synchronize the calendar year with the solar year, or the length of time it takes the earth to complete its orbit about the sun, which is about 365¼ days.

The length of the solar year, however, is slightly less than 365¼ days—by about 11 minutes and 14 seconds. To compensate for this discrepancy, the leap year is omitted three times every four hundred years.

In other words, a century year cannot be a leap year unless it is divisible by 400. Thus 1700, 1800, and 1900 were not leap years, but 1600, 2000, and 2400 are leap years.

In Coming Call

2008-02-29T09:25:00.004-05:00

This just tickles my funny bone every time I think of it. In Coming Call - gimme a break....

Quite a while back the battery on my portable phone bit the dust. So on my monthly toilet paper run to Wal-Mart, I added a battery to my list. Upon checking those out, I realized it was just as cheap or cheaper to buy a whole new phone. Simple math... a battery cost as much or more than a new phone. I love the concept of supply and demand, it really works. So to the new phone section I went. I'm thinking well, if I have to get a new phone I might as well get one that lets me know who is calling. My friends who have those always rant and rave about that feature. If they so choose, they don't have to answer the phone and on the other plus side, they know who is calling or at least the phone number being called from -- did that make sense. The prices were very reasonable and I bought one in the "middle" price range. It had buttons that do this and buttons that do that, I was quite impressed.

When I got home, I read the directions and it says you have to contact your local phone company to start the "service". That should have been a dead give-a-way so I called the phone company. I am told in order to have that service of knowing who will be calling, it will be an additional $8 + per month on my phone bill. I say "I don't think so." I already have my long distance disconnected to save on that expense, why would I add something that I really don't need. So now when my super duper phone rings with all those added buttons on it, I have a message that says 'IN COMING CALL' well dah, what else would it be. :o)

What is Pulmonary Hypertension

2008-02-03T16:33:00.000-05:00

This is a little something I found on the web a while back, sorry I can't give the credit where it is due but I didn't copy as to where I got it from... must have had a PH moment. A more updated version of what we are use to seeing.

What is pulmonary hypertension?

Pulmonary hypertension occurs in individuals of all ages, races, and ethnic backgrounds although it is much more common in young adults and is approximately twice as common in women as in men.

Why do the pulmonary arteries narrow?

Scientists believe that the process starts with injury to the layer of cells that line the small blood vessels of the lungs. This injury, which occurs for unknown reasons, may cause changes in the way these cells interact with the smooth muscle cells in the vessel wall. As a result, the smooth muscle contracts more than normal and narrows the vessel.

What are the symptoms of pulmonary hypertension?

Symptoms of pulmonary hypertension do not usually occur until the condition has progressed. The first symptom of pulmonary hypertension is usually shortness of breath with everyday activities, such as climbing stairs. Fatigue, dizziness, and fainting spells also can be symptoms. Swelling in the ankles, abdomen or legs; bluish lips and skin, and chest pain may occur as strain on the heart increases. Symptoms range in severity and a given patient may not have all of the symptoms.

In more advanced stages of the disease, even minimal activity will produce some of the symptoms. Additional symptoms include irregular heart beat (palpitations or strong, throbbing sensation), racing pulse, passing out or dizziness, progressive shortness of breath during exercise or activity, and difficulty breathing at rest. Eventually, it may become difficult to carry out any activities as the disease worsens.

My Friend Gayla died

2008-01-23T09:57:00.000-05:00

My dear friend Gayla died January 20th and the pain and heartbreak I feel can only be a small portion of what her family is going through. We were good phriends. We met when I found out she also had PH and after that first phone call we had a bond. That was over 5 years ago.

I picked her up so we could go to a support group meeting and from then on it was a phone call or two a day. We talked about PH, husbands, children and things friends (phriends) talk about. I won't mention them all but you know how we women can be. Sometimes I couldn't believe that we talked for over an hour sometimes close to two hours a day. About something important or maybe not. We talked, we shared, we laughed and made each other feel like we knew what was going on. We were a part of each others lives.

She so loved her husband Denny and Brian, her son; he was her pride and joy. I feel like I was there when Brian took his first step; got his first tooth and all the up through high school graduation, I knew what that boy, now a young man did. And Denny, how he did his tour in Viet Nam, his job with the Railroad, how he became involved in the VFW, how she became involved with the Ladies Auxiliary at the VFW.

With this disease too many just don't understand what it is that is going on with us. "You look so good", and my response to that one is well, the meds must be working... Just a little jab to let "them" know that maybe I might look o.k. but deep down I may not be; depending upon the day. Gayla said she was going to use that one too.

Gayla had other complications to boot. She was what my Mother called "a blue baby", born with a hole in her heart and if she did too much, she would turn blue. She told me how she almost didn't make it; how her Grandmother would make her breathe when she was an infant. The doctors were surprised when she made it to 3 mos then she was told that she probably wouldn't make it to be a teenager. Well, she fooled them all. She was a fighter and knew her limitations and she taught me how to know mine.

The way she talked about her sister and brothers, she must have been a pistol. They watched over her, made sure no one picked on her. And knowing Gayla the way I did, I bet she "used" that position once in a while. She had such a sense of humor. She couldn't play the way "normal" children do but she did learn how to ride a bike and she so enjoyed doing that. She had chores to do at home but nothing that would be harmful to her heart. All her life she had to watch that. She told me how she would try to get out of doing the dishes when it was her turn but it didn't work. Doing dishes was something she could do.... She told me of some of the spats she and her sister might have -- those that sisters do -- but then she told me how if someone were picking on her how her sister would step right in and make sure it stopped. They were and are a very close knit family.

I could go on and on but today is the viewing and tomorrow is the funeral. I know I am going to have a difficult time and I already feel like I am cried out, but I don't think so.

Who'dathunk it

2008-01-18T18:05:00.001-05:00

Feeding yourself positive thoughts

Your irrational thoughts and their impact on your stress response are better controlled when they are caught early. Let them go unchecked and you will find yourself overwhelmed with intense feelings that are disproportionate to the event that you are responding to. You are what you think. Feed yourself positive thoughts and you will be a positive person.

Well, it makes sense to me.

And remember to smile, it's contagious. :o)

A Dazzling New Year to One and All

2008-01-13T10:33:00.000-05:00

I have decided I will try to write something about either me or PH on a more regular basis. So that should make a DAZZLING New Year for at least me. I have been sooo busy and with what I'm not sure. I often wonder how I ever worked before.

Well, I can tell by the first few sentences above, I will ramble on and on so I'll stop for now, gather up my thoughts and maybe write something later.

Have a Happy New Year everyone - may it be as healthy and prosperous as possible.