Tuesday, May 5, 2015

Celebrating World PH Day


PH is a disease everyone should know about. Share this World PH Day image and message with 5 of your loved ones. #PHAssociation

How did YOU celebrate World PH Day? Continue your efforts into the rest of the week.

Monday, May 4, 2015

Look at What You Accomplished!

National Call-In Day was a success and it’s all thanks to the PH community. Take a look at what you've accomplished:
  • 17 support groups passed out National Call-In Day postcards
  • 17 states have confirmed that they made calls
  • 51 legislative offices received calls
  • 11 Members of Congress co-sponsored the Patients Access to Treatment Act within the first two weeks of our calls
That's just what we know about, and it's fantastic, but there is likely more. One minute of your time answering this four-question survey will tell us which offices we should follow up with, so we can get as much impact from your calls as possible.

Or, contact Angelia at Advocacy@PHAssociation.org or 301-565-3004 x753

Saturday, May 2, 2015

Webinar: PH Patients Should Always Be Prepared

Webinar: Always Be Prepared - Considerations for Travel and Emergent

Thursday, May 14, 2015,  5 p.m. ET / 2 p.m. PT
https://cc.readytalk.com/r/7d3nsr61u6rw&eomThis webinar will empower PH patients and caregivers with practical skills necessary for successful travel (regional; national and international). Latora Grant Scott, PhD, RN, CHFN, will lead a conversation on preparing for travel and emergent situations with oxygen, infusion pumps, and loss of medications. Webinar participants will be able to develop a personal medical emergency plan and gain an understanding of patient/caregiver preparation responsibilities as well as their healthcare team’s role. Learn more or register.

Friday, May 1, 2015

PHCC Patient Registry Fundraiser Tonight


PH patient Dr. Mark Gerber appeared on his local FOX affiliate to spread awareness for PH and the Pulmonary Hypertension Association. Dr. Gerber, is one of the planners behind tonight's An Evening With Jay Leno fundraiser in Hartford, Conn. He gave his first hand experience of what it's like to suffer from PH, whiling bringing attention to the need for a PH Patient Registry. View the informative video here. Can't attend the event, but still want to contribute? Donations to the event are greatly appreciated.

Tom Lantos Innovation in Community Service Awards Announced

The Pulmonary Hypertension Association is pleased to announce its 2015 Tom Lantos Innovation in Community Service Awardees. The awards of $5,000 are supported by an unrestricted grant from Gilead Sciences and were established to create opportunities for those in the PH community to try out new ideas that can help advance research and awareness of PH. Learn more and view our 12 winners for 2015.

PHA thanks Gilead Sciences for continuing to make so many community service projects possible.

PH Patient Donates Books in Honor of World PH Day

In honor of World PH Day on Tuesday, May 5, Pulmonary Hypertension Association support groups will get a special delivery. Gerry Fischer, president of PHA Europe, is donating books written by his daughter, PH patient Maleen Fischer, to support group leaders. Maleen's book,“Hope Springs Eternal,” is about her PHight with PH. On behalf of all of PHA support group leaders and members, PHA would like to thank Gerry and Maleen for this thoughtful donation!

Thursday, April 30, 2015

Patient Shares Story for Donate Life Month

April is Donate Life Month, a time to raise awareness around the importance of transplant in the lives of many within the PH community and beyond! Here, PHA shares the story of Amy Ford, who had PH and Lupus before receiving a double lung transplant in 2012. Learn more about Donate Life Month and its objectives for encouraging individuals to register as organ donors or read about transplants and PH.

PHA: When were you diagnosed with pulmonary hypertension?
Amy: I was diagnosed in 1986, but I was sick for a year and a half before anyone realized what was going on.

When was a transplant first raised as an option?
At that time, anyone with a dual diagnosis didn't qualify for transplant. I had lupus as well as PH, so my doctor told me that I wouldn't be able to qualify. We went to Chicago to do lab work, and those results also didn't qualify me.

What treatments were you on during that time?
The doctor wanted me to go on Flolan, but I loved to swim and be outside so I didn't want to be on an IV therapy. I passed out three times, and at a certain point you don't have a choice. The doctor told me, "you have to go on Flolan or you won't be here next week." I also tried Subcutaneous Remodulin, but couldn't do it, and Tracleer didn't work for me.

When did you revisit transplant?
In 2012, the doctor wanted to revisit transplant as an option. She said, "Maybe you'll qualify." There was one doctor in Iowa City that she thought I could persuade. We went to Iowa City to meet with that doctor, and was rejected. Then we had heard there was in someone in Pittsburgh who might agree to list me. We went to Pittsburgh and I was approved there. You have to be four hours away from your transplant center, so we were thinking that I would have to move to Pittsburgh. As I was packing my bags, the doctor from Iowa City called me back and offered to do the transplant. I was listed for a double lung transplant.