30 Days of PH: 32 Years of Living With PH and Still Thriving

Photo courtesy of Shirley Craig

Day 28 of 30

This is Shirley Craig‘s story:

Pulmonary hypertension came into my life over 32 years ago … and I’m still here, surprised and very thankful!

My family, faith, doctors, and PH family has sustained, encouraged, and loved me along the way.

Living in Alaska in 1990 with my husband and son, I noticed extreme fatigue, shortness of breath, and pain in my chest. A trip to the ER over a school break led to a heart catheterization and a “one year left to live” diagnosis. YUK!

With my parents and family in Texas — and one of the world’s best medical centers in Houston — we packed our bags and headed out.

There, I luckily was referred to a great PH physician. She saved many lives and helped me bridge to a heart and double lung transplant in 2008.

My only PH medication at the time was oxygen — Flolan studies soon came along, but I didn’t qualify as my PH derived from congenital heart defects.

I felt alone for years until research led me to NORD, which sent a list of PH patients and asked me to write them. I heard back from 15, many sending information about a new organization now known as the PHA. I joined in 1993 and attended my first PH conference in 1996.  I had found my PH family and highly recommend a PHA conference.

Being part of the community is vital, in my opinion, for the best chance at managing PH. The support of people facing the same challenges and hearing their experiences is invaluable.

A local Houston PH support group formed in 1993 and still meets today, virtually for now. I did all I could to assist our group leader, finding speakers and arranging snacks, forming a membership contact list. We later decided to be co-leaders, sharing jobs and allowing for breaks.

After my transplant and our co-leader’s retirement, I’ve been doing it ever since with others when possible. I know what being a part of a group means.

I love seeing new members and their happiness at learning about PH options — someone’s got to do it and right now that’s me! I love my PH family!

Pulmonary Hypertension News’ 30 Days of PH campaign will publish one story per day for PH Awareness Month in November. Follow us on Facebook and Instagram for more stories like this, using the hashtag #30DaysofPH, or read the full series.