Tuesday, June 8, 2010

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




Colleen said...

Very hard to imagine you speechless, Merle. LOL You truly deserved that award, and I'm so glad you've been recognized for how much you do in the PH community! Hugs!!!

phtony said...

Your efforts in the PH community seem so tireless. I recall when you asked me to write something about coping with PH and how at first I thought I'd love to. I began to write & the more I wrote I realized that I wasn't coping at all but was merely ignoring the fact that I was ill and choosing to live (emotionally) as if I wasn't. I still look back at my notes & wonder if things will ever change. I guess I'm just better at helping myself than helping others. Thanks for all you do.