Sunday, July 25, 2010

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.

Friday, July 16, 2010


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,