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.

PH Congressional Luncheon

If I don't write soon all that happened with the PH Congressional Luncheon will be gone. Six of us-Diane, Tonya, Medeta, Sheree, Meg and myself traveled in Meg's van to DC. There were frequent stops as it seemed no one was on the same eating schedule of bathroom break. What a trip up and back.

We were able to accomplish the goals set out for the trip. Besides attending the luncheon we wanted to personally thank Senator Elizabeth Dole for her help to the PH community. She had agreed to introduce the Tom Lantos PH Research and Education Act into the Senate. She was out in the Capitol when we arrived at the office ;but her general counsel, Dean Hingson assured us he would pass the message on to her.

We did meet up with Senator Richard Burr for a photo op on the steps of the Capitol Building. This almost did not happen as the location was changed with out notifying part of the group--namely the PH patients from NC. It was a very cold day and Senator Burr was out there in a suit jacket. We all had the shivers. He was about to leave before we arrived when someone remembered that the 5th graders from Madison, NC had made cards for him. While he collected we arrived in the nick of time for the picture. I do believe there were ice crystals on the Senator's hand when he shook my hand. LOL

National PAH Blog Day

November is Pulmonary Hypertension Awareness Month. Hopefully with all the work done by so many PH patients, family and friends, many more will become aware and knowledgable of this disease. Saving one life or having just one person diagnosed and treated in a timely fashion will make all our efforts worth while.

The Piedmont Pulmonary Hypertension Support Group has been extremely busy since the PH Conference in June 2008. Here is a list of what I can remember in no special order. These things could not have happened without the total dedication and hard work of Diane, our support group's Advocacy Chair.

• Visited Torre Jessup, District Deputy for Representative Mel Watts
• Visited Representative Howard Cobble
  
• Visited Representative Virginia Foxx
• Visited Rose Auman, District Deputy for David Price
• Visited Representative Brad Miller
• Visited Senator Elizabeth Dole who agreed to introduce the Tom Lantos Research and Education Act into the Senate. Those of us with PH were saddened when Senator Dole did not get re-elected. We will continue this mission with Senator-Elect Kay Hagan.
• Gave an advocacy presentation to a neighboring support group
• Attended a PAH presentation/dinner in Charlotte, NC
• Held the third NC Cure PH Golf Tournament raising approximately $12,500 for PH research
• Distributed PH information during Belk's Charity Day November 15, 2008
• Cindy attended Lewisville, NC Town Council Meeting November 13, 2008. Gave a three minute PH presentation to the council. Proclamation granted for November being PH Awareness Month in Lewisville. (Just a note--our current governor does not do proclamations thus the request on the local level)
  
• Arranged and set up PH information table in the lobby of Wake Forest University Baptist Medical Center during the week of November 17-21, 2008
• Diane has Interview November 18, 2008 for featured article in local newspaper--That is today!!
  
• Interview scheduled with Fox 8 News November 19, 2008
• Plan to attend PH lecture presented by Dr F. Torres from SW University of Texas November 19, 2008 (this is immediately following the TV interview at the Medical Center--perfect timing!)
  
• Will be attending The Pulmonary Hypertension Congressional Luncheon Thursday November 20, 2008.
• Plan to attend the PH Christmas lunch presentation in Ranole, VA December 2008. Dr Victor Tapson from Duke University is the speaker

We plan to take two weeks off during the holidays but will come out swinging January 2009. As I write this list it amazes me just what our little support group has accomplished since Conference. This did not include the emails and calls to representatives regarding other legislative issues.

If we can do it so can you. Having Diane as the Advocacy Chair made all this possible. She kept up with who she spoke with, when they could meet, calling members, sending out thank you notes plus a lot more. There is so much work that still needs to be done. Share the work load. The support group leader can not possibly do everything--we also have PH and get tired. Just knowing we are helping is a true joy but we have fun, laugh hystirically, and shed tears of joy all at the same time. November may be the official Awareness Month but those of us with PH need to work on getting the word out all year long. Offer your services to your Support Group Leader. Maybe you have a special talent the leader is not aware of. Maybe you are a bit shy--just speak up. Don't wait to be asked. We all get very tired and do rest when it is needed. It makes the work a bit easier if we all pitch in.

Cindy
Piedmont PH Support Group Leader
North Carolina

Questions: cpickles50@gmail.com

Anniversary

Today is an important day in my life. November 17, 2008 John and I have been married 36 years. We grew up in the "hippie era". LOL. Where did all the time go? With a blink of an eye, it was gone. I never thought about getting old as I really did not plan for it to happen. We would live happily ever after. Then on December 29, 2002 everything changed. That was the day I became acutely ill and learned after a 2 1/2 year roller coaster ride that I had pulmonary arterial hypertension. Now every day is a true gift to be shared with family and friends.