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