If you’re a Pulmonary Hypertension Association member, you should have received the most recent issue of Pathlight. Our quarterly print magazine – exclusively for members – hit mailboxes in early December.
This issue features inspirational stories from patients and caregivers, including those who participated in our PH community workshops and PH Awareness Month campaign. We also hear from health care professionals who attended PHA’s PHPN Symposium and those who work at new PH Centers of Comprehensive Care. Here’s a glimpse of what’s inside:
An Author’s ‘Survival Guide’ to Longevity With PH
You could say Gail Boyer Hayes wrote the book on PH. Hayes, who was diagnosed with idiopathic pulmonary hypertension in 1983, authored the first three editions of PHA’s “Pulmonary Hypertension: A Patient’s Survival Guide.” “I try to recall moments of joy when I’m down,” says Hayes, who is among the longest-living people with PH. “I remind myself that patients far sicker than I, and less fortunate, are still leading happy, useful lives.”
Support Group Moderator Helps Others Find Answers
Vicky Peterson is the parent of an adult son with PH. She helps moderate the Pulmonary Hypertension Association CTEPH Facebook group and volunteers in her Northern Utah community. “When my son was scheduled for surgery, I did an exhaustive search for CTEPH and PTE, and I found and joined the PHA CTEPH Facebook group. Our wonderful members literally saved this mama’s sanity during my son’s surgery and recovery.”
Former Nurse Puts Experience To Work
Jen Cueva of San Diego considers herself a proud PH fighter and advocate. Her 2005 diagnosis overwhelmed her until her PH specialist Richard Channick introduced her to PHA. After she started connecting with others who shared her journey, she felt less alone. “Knowing that there were people who truly understood my struggles was a gamechanger.”
Regional Programs Become Comprehensive Care Centers
For the first time, two PHA-accredited Pulmonary Hypertension Care Centershave expanded from Regional Clinical Programs to Centers of Comprehensive Care. The new comprehensive care centers are Ascension St. Vincent in Indianapolis and Yale New Haven Hospital in Connecticut.
Professionals Advance PH Knowledge To Apply to Their Practices
More than 600 health care professionals attended the Pulmonary Hypertension Association’s PHPN Symposium Sept. 28-30 in Arlington, Virginia. Attendees came from nearly every state and several countries, including Lebanon, Saudi Arabia, Germany and France. Themed “PHoundation for a Brighter Future,” the symposium featured sessions on the latest PH research, treatment and care.
“It’s interesting to see how someone does something this way, and another center does something that way,” said Denise Wilson, PH nurse at George Washington University Hospital. “You take tidbits from each to elevate your care. You’re not only learning from the sessions, but from the connections you make.”
As always, this issue of Pathlight features a column from PHA Chair Tony Lahnston, insurance tips, fundraising wrap-ups, health news and more.
To read these stories and past issues of Pathlight online, make sure your PHA membership is up to date.
