Monday, November 24, 2008

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

Tuesday, November 18, 2008

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.

Piedmont PH Support Group Leader
North Carolina


Monday, November 17, 2008


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.