-
What Was Your Experience When You Were First Diagnosed?
Doctors diagnosed me with PAH when I was six years old, so my memories of that time are unreliable at best. Most of what I know about it comes from stories my parents tell. From them I learned that when a doctor told them the news, my dad fainted on the spot. He’s a registered nurse with a background in home infusion so he already knew about pulmonary hypertension, and about the only approved medication at the time, Flolan. My mom tells about all the well-meaning family members and friends who Googled the disease and forwarded her their dismal search results. Ahem. Not helpful.
But we also experienced an outpouring of support from friends. Some friends helped send us to Columbia in New York City, which at the time was one of two centers treating pediatric patients with pulmonary hypertension. When we returned home (with a Flolan pump in tow), another group of friends had painted my bedroom and spruced up our backyard. The underwater mural in my bedroom is easily more memorable than my initial diagnosis.
I’m well aware that I’m in the minority of patients diagnosed at a very young age. I’m interested in hearing from you: what emotions came up when you were first diagnosed? How did friends and family react? What were the first steps you took on the path to receiving treatment?
-
1 Reply
-
Kathleen, right now, I’m trying to sort thru a whole mess of thoughts and feelings. I only had the right heart catheterization 3 weeks ago, so these are early PH days for me. I have 3 other chronic (auto-immune) disorders, so I’m intimately familiar with the denial process.
For the time being I’m working on trying to see something positive in all this.
Log in to reply.