2006 Conference Story

Angie Eldam

My roommate, Druci, and I arrived on Thursday at the Minn/St.Paul airport at 10:30am and booked our round trip ride on the SuperShuttle. Upon arrival to the hotel we were lucky to be able to go to our room and relax for a bit. On our way out to lunch we met a woman from Israel, Iris, she told us that she had traveled for 17 straight hours to get to the conference, she was on her way to Target for souvenirs. We went outside to see that the hotel was so convenient to the Nicollet Mall and we had lunch at a popular Sandwich shop there. We decided to visit the Target to pick up some last minute items and met Iris; she showed us what she had gotten for her daughters back home. She was so excited to find our prices far less than at home. We returned to the hotel to attend a training session at 5:00pm for volunteering at the Registration Desk and after dinner took a walk down the street and saw the “Mary Tyler Moore Show” statue and took some pictures and then we went back to the hotel to get some rest from our very busy next day.

On Friday, Registration opened at 7:30am; we weren’t scheduled to volunteer 9:00am-10:00am, so we got to view some of the vendor tables. We attended a Support Group Leaders Forum & Luncheon that was sponsored by Co-Therix at 10:30am. It was very informative, we discussed different things that Support Groups need help with and broke off into groups to come up with suggestions. One topic was to bring in new members, and the solutions were to send a notice to PHA six times a year to be mailed out and to circulate flyers to different physician’s offices. Another topic was HIPPA an issue regarding privacy, and a release was circulated around the room to view to have patients sign. We were told that all the items would be mailed out to those attending. I felt bad that the “Power Up: Learn to Be an Effective PH Advocate” was in session at the same time, I would definitely have benefited from this session, but I can’t have it all.

At 1:00pm, we attended the conference opening with a Keynote Address via video from Congressman Republican Kevin Brady (TX) and Democrat Congressman Tom Lantos (CA). It was very moving to hear Kevin Brady tell the story of Emily Stibbs, how he had promised his close friend Jack Stibbs that he was going to not just stand by and also a young lady Kristen Cote 16 years old, who is deceased and how he met her and saw her struggle. Also to hear Tom Lantos tell the familiar story of his granddaughter Charity Sunshine being assured that nothing was wrong when she fainted, that she was too young and his affirmation that he is going to do all that he can to find a cure. It was very heartwarming. Robyn Barst, M.D. presented a timeline, correlating PHA progress with the medical progression with recognizing PH and treatments.

The next session I attended was “Stress Management”. I was surprised to find that stress can really affect your body in so many ways. Stress can give you dry mouth, decrease your short-term memory and concentration along with increase your heart rate and blood pressure (something we all need to be aware of). Some suggestions were not to make major decisions during acute stages of stress or at the time of initial diagnosis. Also to live in the present, don’t dwell on the past or worry about the future. Keep a positive attitude by focusing on successes and victories and allow for imperfection. One gentleman in the group did not have anyone to help him and his family was too far from PH specialist to live with them made me realize how important a support group is and that we need to be more proactive in finding “social services” to help our patients. I then took a rest because being post-transplant; none of the support groups met my needs this time.

I attended “Speak Out: Tools You Can Use to Raise PH Awareness”. They had one patient share her story about her media attention that she fought to get about PH; she was featured in Pathlight recently. There was a gentleman that works for a newspaper attending and he said the main thing is to get a story line to get the attention of the media. It was a quiet session; most of the attendees were at the Fashion Show which is always a big hit at conference.

At the “Roadmap to a Cure” dinner sponsored by Encysive, Michael McGoon, M.D. presented a timeline of the progress of PHA from past to the present conference. I was very encouraging to see how far PHA has come. . I met a charming couple from Australia, they had to travel so long and had about 4 stopovers to finally get to Minneapolis. I felt very lucky to live just a direct flight away in Houston. I turned in about 9:30pm, gotta get up for the 7:30am breakfast!

On Saturday at the “Around the World” breakfast sponsored by Actelion, the international representatives all spoke about their experiences in their countries. The struggles they spoke about were unbelievable, to not be able to obtain medicine, or even find a PH specialist. The Australian woman spoke of her daughter dying hours after giving birth to find out on autopsy that she had PPH, so heartbreaking, another patient, told a heartbreaking story about her experiences trying to get help with treatments and awareness in South Africa. I attended the “Nutrition, Diet, Complementary and Alternative Medicine”, they spoke about sodium restriction and weighing yourself daily and calling your physician if increase of >2lbs/day or >5lbs/week. One woman attending this session has lost 150lbs and was having trouble to get off her “plateau”. She said they wanted to decrease her calorie intake even more, but was told that sometimes you can not be eating enough to lose weight and to ask her doctor about a metabolic study to see if there may be other reasons she wasn’t losing any more weight. I didn’t understand much about the complementary alternative medicine (CAM), because I am not familiar with this type of therapy.

At the “What to Do When Medical Therapy Is Not Working: Lung Transplantation, UNOS, and Other Surgical Treatments” they mentioned that time accumulated is not relevant anymore for patients over 12 years. Currently, UNOS uses a Lung Allocation Score which includes diagnosis, age, diabetes, six minute walk, PFT’s and more. Sometimes patients with Scleroderma are not listed because of esophageal complications with the disease. Transplant is not a cure, it is a Trade Off, you are trading one chronic illness for another; 4% of all Lung transplants are PPH patients. The transplant team has to decide if the patient is sick enough for transplant yet well enough to survive; to consider other medical problems. They also mentioned a right ventricular assist device to bridge to transplant.

The “Journeys” Luncheon sponsored by Co-Therix was great; I got a shock when I looked up at the screen and saw a HUGE picture of myself, they were displaying different pictures of PH patients, people who had sent in articles for Our Journeys. Each physician presented their patient and told their story from their side, then the patient had a turn. I appreciated hearing the gentleman that had received a heart-double lung transplant, he had a charming personality. “Endothelin Antagonists” was a very informative session. They stressed that each patient benefited from different medicines. They also mentioned they look at the patients financial resources, if a patient can have success with a lesser expensive drug, they won’t run out of insurance benefits so quickly. (lifetime maximum). Bosentan (Traceer ®), Thelin ® (Sitaxsentan) and Ambrisentan are all Endothelin Antagonists. All Endothelin Antagonists recipients should avoid pregnancy because of birth defects and Bosentan and Ambrisentan affect oral contraceptives, so be careful! One of the differences between Bosentan and sitaxsentan is that bosentan affects both ETA and ETB receptors, but sitaxsentan and ambrisentan affect ETA selectively. Bosentan and sitaxsentan both affect warfarin effectiveness. Ambrisentan has less affect on liver enzymes than sitaxsentan or bosentan.

At the “Changing to Different PH Medications; Important Things for Patients to Know, Before, During, and After the Switch” they said that weaning off Flolan is done in the Cath Lab so they can monitor the patient extremely close as they start the other treatment concurrently. They also mentioned a cancer chemotherapy drug is being used to treat PH called Gleevec (I’ll have to look into this further). I then attended the support group for “Long Term PHers” and was surprised to find patients that had been diagnosed in the 1970’s! I left a few minutes early to attend a “get together” of the PHA message board members which was great to put faces to all the people I have contacted on the message board. The PHA Chair’s Reception was nice to meet all the ‘behind the scenes’ individuals that give so much to PHA.

At the “Founders Dinner” sponsored by Myogen, the awards were given out and those recipients were recognized. They announced the next conference in 2008 was going to be in HOUSTON!!! I was so happy that it was going to be in my town. Carl Hicks gave a talk about Advocacy titled “Why I Fight”; he spoke about his daughter, Meaghan, and how she influenced his decision. He also shared a beautiful picture of her with her new car she got for graduation. A perk to this dinner was that the tables were labeled with each physicians name and a specialty of treatment and the attendees could choose whom to have dinner with.

On Sunday, at the “Connections Breakfast” sponsored by Actelion, we had an opportunity to visit and chat with each other raffle tickets were drawn by the PH children, it was so heart moving to see the children announcing their name and then trying to read the names they drew, can you imagine a child trying to read someone’s handwriting? I then attended a session for Parents Only—Ask the Pediatrician because as a support group leader, I often encounter parents calling me for support and I wanted to know what issues are important to these parents. I heard that one of the most important things a parent needs to remember is to give the child choices, let them have as much control of their illness as their maturity level; even allowing them to mix their own medications when age appropriate and choose the time they take their meds regularly. One parent wanted to know if they should “push” their child to do more exercise. Dr. Barst said that a normal child exercises to strengthen their heart, but a PH child’s heart is all ready working at capacity, to let them pace themselves. For younger children, she suggested to teach them to look for signs of fatigue; what them for shortness of breath and weakness. Another helpful hint I learned was to have a second set of books at home to avoid them having to carry books, also if they are ill, they have their textbooks. In the “How is PH in Scleroderma Different?” session, I learned that about 50% of scleroderma develop PH. Some patients are affected systemically and organs are affected while others are affected by just the outside organs, skin.

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.