Saturday, December 19, 2009

2009 PAH Reflections

Wow the year is almost gone again. Where does the time go? Another good year for Piedmont PH Support Group. PH activities are always in the forefront. I need to comment more frequently as I will probably forget something important. Give me a minute to think of everything that happened in 2009.

---Good shock of all shocks, I was asked to serve on the PHA Board beginning in January 2009. This is a definite honor. Attended the first meeting in Orlando February 2009--truly a learning experience. There is so much behind the scene work that makes the PHA organization work like a fine-tune, oiled machine. The dedication and commitment of the physicians, staff, volunteers , patients, families and friends to find a PH Cure is beyond remarkable.

---Our group again participated in the spring Belk's Charity Day. This is an easy fundraiser with no cash out of pocket. Anyone who has a Belk's in their area can contact the store office to getout details. They hold a spring and a fall charity day.

---May 2009 we held our second 5K PH walk/run. Even with the rain we had 40 participants and raised $10,000 for PH research. The new PHA calendar arrived today. Diane is the one holding the sign, "I walked 5K for PH.

---Traveled to California to the 2010 Conference Hotel to help with logistics planning. The conference is going to be awesome. Again there is so much work that goes into pulling off a quality event of this magnitude. You will just love it. Even John is planning to attend conference this time. I think Disneyland was more a pulling force than PH. LOL He is still a kid at heart.

---Diane Ramirez again arranged congressional visits in NC expanding outside of our group's representatives. Diane contacted other support group leaders in NC, schedule congressional visits and arrange for patients/family to attend their district visit. During the summer visits were made to Rep Heath Shuler, Rep Sue Myrick, and Rep Patrick McHenry with another Representative co-sponsoring the Tom Lantos Research and Education Act without even having a visit. To my knowledge NC has the most co-sponsors. Go Tarheels!

---Diane had her PH story published in FOCUS, a patient information magazine distributed to hundreds of physicians offices in the area.

---September 2009 we held our 4th NC Cure PH Golf Tournament. The golf pro suggested that we schedule 4-5 tournaments a year. It doesn't matter if we hold the tournament or not, just schedule it as they want guaranteed rain for the course. 72 golfers played as the rain fell all day long. Three of our four tournaments had rain. Is there a black cloud hanging overhead?

---October 09 was the second Board Meeting. Two friends traveled to DC with me. We drove up a couple days early to hit Capitol Hill. Diane tried to arrange a meeting with newly elected Senator Kay Hagan but it did not happen. We were encouraged to attend her "Wednesday Morning Coffee for Constituents." Only one other couple showed up thus we probably had more time with the Senator than if we had had an appointment.

---October 2009 John and I attended the first "Through Tears Comes Laughter" a PH event in Charlotte, NC. It was variety type show with musical groups and comedians (one from Comedy Central and the other from the Last Comic Standing). We laughed so hard we both cried. Glenn Johnson did a fantastic job of organizing this event. If I am not mistaken he is planning this event again for 2010. Without a doubt if you live anywhere near Charlotte, NC area, this event is a must.

---Sometimes you have an exceptional speaker at the support group meeting that after it is over you wished it had been taped. This was the case of our October 09 meeting. I met Dr Daniel Bensimhon, a cardiologist from Greensboro, NC (previously at Duke with Dr Tapson) maybe 2 years ago. I knew that if he ever agreed to speak to our group it would have to be taped. How fortunate we were to have him present on Right Heart Catherization with Invasive Exercise Testing. His presentation was so much more. It had a bit of history mixed with some humor and a ton of information regarding echo-cardiograms, R & L heart caths and exercise testing explained in a fashion that simplified grasping difficult concepts. Yes he takes wedge pressures during the exercise phase. It was amazing. Thanks Dr Dan!

---In November, a PH information table was again set up at Wake Forest University Baptist Medical Center. You would think the Advances in Pulmonary Hypertension had wings as they flew off the table as fast as they were replenished. This is good!!

---John and I traveled to northwestern PA to visit my mom who is in poor health. Our return trip took us via DC and we attended the 09 November PH Congressional Luncheon. This was a first for John. By the second congressional visit John was right in the thick of the conversation. This was good as he now knows that we do actually work when going to DC. LOL
John is a great guy. He calls himself the group's goPHer. Without his help and support, we could not accomplish half of what we do. He is literally our physical strength. Thanks John. Love You!

---Last, I recently contracted another fatal condition--might even be more serious than PH. I have become a "Twlight" junkie just in the past 2 months. Read all the books twice. Saw the first movie a bunch of times (actually have the DVD and the soundtrack). So far have only seen the second movie, "New Moon" once. I never liked vampire movies watching them with my dad as a kid. This series is slated to be the best love story since Titanic. Is there any hope for recovery doctor? LOL

Merry Christmas and Healthy New Year to all.