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