How the heart is supposed to work

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

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

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

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

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....

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

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

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

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

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

"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

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

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

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

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.