-
Meet your new co-forum moderator!
Hello! My name is Cullen Steele. I’m new to the PH forums, but many of you may already know a lot about me through my mom, Colleen Steele. I’m joining her and Jen Cueva as a co-forum moderator, focusing on PH and transplant.
For those who don’t know me, I was diagnosed with idiopathic pulmonary arterial hypertension (IPAH) when I was 8 and placed on triple therapy, one of which was IV Flolan. I did well on treatments for 5 years until I needed and received a heart and double-lung transplant on August 7, 2014.
There can be many challenges that come with living with a rare disease like pulmonary hypertension. As someone who was diagnosed at an early age, I was granted an interesting yet unfortunate perspective on this. I not only saw how this impacts children, teens, and young adults as they grow up, but experienced it myself firsthand.
I’m 11 years post-transplant and would also like to share this experience with you. I’ve gone through the transplant evaluation process, know what the wait for the call is like, and experienced a dry run, in which the donated organs were not viable to use. I know what recovery is really like and what it takes to stay well post-transplant.
My experiences with having PH and having received a transplant have heavily influenced my academic career. I am in my senior year at Immaculata University as a double major in Social Work and Sociology, and a minor in Psychology.
I am looking forward to engaging with all of you, and I hope to cover topics that will interest you the most. I am open to suggestions.
What topics would you like to see me cover regarding PH and/or transplant?
Log in to reply.