2006 Conference Story
Friday, June 23, 2006
I don't know how many different emotions a person can experience in a 12 hour time period, but, I feel like I experienced about a million! Wednesday night, while at home in bed, I couldn't get to sleep. All I could think about was the commercial for Disney World where the little boy tells his mom, "I'm too excited to sleep!!" The idea of going to a conference to learn about this disease that has had such an impact (both positive and negative) on my life was overwhelming. When I was diagnosed, I thought I was alone (as many of us initially feel). Then I found the PHAssociation. Now I was coming to witness, in person, the magic of this organization. We arrived quite late Thursday evening and I was once again facing a replay of the Disney World commercial! :0 On Thursday morning I registered, made a bid on the beautiful quilt donated as a PH fundraiser and then went into the research room where I filled out forms, talked to researchers, registered for the national data base and had a blood draw. I was feeling like I was back home, visiting the doctors office! I then went to the first session I had chosen which was meeting the PHA's Board of Trustees. Their stories of how PH has affected their lives along with an obvious feeling of commitment and passion for a "Roadmap to a Cure" left me feeling overwhelmed with the realization of how many people are fighting for a cure, fighting for us, fighting for me, a complete stranger.
I also attended a session of stress management, a fashion show on hiding Flolan and Remodulin pumps and a support group just for people on Flolan. I was in awe by the numbers of patients in the session. Many shared their Flolan stories and offered words of wisdom.
After dinner I went to my room feeling completely overwhelmed and sad. I knew it was good to be here, but it was difficult to see so many better than me and worse than me. I went to bed that night wondering if I had made a wise decision to drive six hours to attend this conference. Little did I know that the next day would be filled with laughter, excitement, understanding, inspiration and hope...real hope for a future.
Saturday & Sunday, June 24 & 25, 2006
What an amazing day!
After convincing myself to get out of bed for a 7:30 breakfast, I became more convinced to return to bed and skip breakfast! :) The first session I attended was called "Understanding Pulmonary Hypertension: The Basics." This session was led by HUGE names in the field of PH, including Dr. Michael McGoon! Dr. Shelley Shapiro discussed that PAH is high blood pressure in the lung’s circulation. She also explained that the lungs are the only organ in our bodies that circulate all of the body's blood. She explained that the right heart was never designed to be strong and that, unfortunately, there is nothing we can do to strengthen the right heart. But, if we do exercise approved for us, as individuals, by our doctors, we can condition our bodies in order to get more "bang for your buck." :) The next session that I attended was called "Basic Research in PH: the Door to New Therapies." We heard that researchers have now learned that one of the problems with ph is the loss of elasticity in the pulmonary arteries.
They are working on an inhibitor that might have a positive effect on the arteries. They are also working on finding ways to block the "growth factor receptors" in cells that are making our pulmonary arteries thick. The last interesting thing I picked up in the session was the discussion of the use of the cancer drug "Gleevek." A Dr. Ghofrani in Europe has used the drug on (I think) 14 "n-stage" ph patients. If I remember correctly, 6 of those actually got better. The bottom line is that these people are working so very, very hard for each and every one of us. For the first time since June 29, 2004 I felt hope, real hope.
I went to one more session before lunch. It was called, "Prostanoids (Flolan, Remodulin, Illoprost)." We were told that they were all basically the same drug with different delivery systems. But, when asked, a couple of the doctors informed us that there is a "theory" that Flolan might do some remodeling in the pulmonary artery. But, there is no solid evidence to support that "theory." He told us that Remodulin and Illoprost might very well fall into the same "theory," but they are so new by comparison, that it's hard for them to say. Some of the physicians said that for newly diagnosed patients, they usually use Remodulin. If the site pain becomes unbearable, they will then try to switch them to Illoprost." Some doctors are most comfortable with Flolan because of it's track record and they usually put patients on Remodulin (sub-Q) if the patient runs into infections and mixing problems. But, all of the doctors said that it was the patients decision which drug to use, which many times is based on quality of life issues. And, all doctors said that they were trying to get all of their patients on some form of combination therapy.
Lunch was yet again another amazing experience! Several doctors and a few of their patients shared their ph journeys. We listened to people that were at death's door. But with the help of their doctors were there living a good life.
After lunch the next session was titled, "Epoprostenol/Flolan: New Concepts in Dosing, Prevention and the Management of Catheter-related Infections, etc." This session was extremely well run with blunt conversation about the pros and cons of different treatments. Dr. Iona Preston started out the session by saying, "Flolan is the most potent drug available for PH." When asked, by me (:0 I'm such a mouthy dame!) "I thought that Flolan, Remodulin and Illoprost were basically the same drugs with different delivery systems." She responded that that may be true, but Flolan is the only one that has been around long enough to "know" it's efficacy.
THEN IT WAS TIME TO PARTY!!!!!!!!!! Thanks to Heather, several of us met, face to face for the first time ever!! I must say that I was somewhat disappointed by how tall, young and thin most everyone was. While visiting in our discussion boards, I assumed we were all short, fat and old. :( But, Leslie the cartoonist was there and I made her PROMISE to do a cartoon of our get-together and that she would make me tall and thin with long blond hair!
After a dinner with our new/old friends and watching some very deserving people receive was very lovely awards, it was time to head back to my room.
Due to my father-in-law’s severe illness, we needed to leave the conference early on Sunday morning, missing the last half day of the conference. But, as I was packing and unwinding I was filled with hope. I now knew that that none of us are alone in this fight. I kept hearing the words of Colonel Carl Hicks who spoke at the awards dinner. As a parent of a ph person he spoke for patients, caregivers, family members, friends, PHA staff, congressman and everyone else when he said, (I am paraphrasing) “We don’t have a ‘right’ to fight for a cure, we have an ‘obligation’ and with that fight we re-establish hope. Let all of us be able to say that we were part of the cure.” God has blessed all of us with this organization. I will sleep soundly knowing that I will now and forever be able to say that “I am going to be part of the cure for pulmonary hypertension and I won’t ever have to do it alone.”
Submitted with love and appreciation.