My name's Randy Shifflett. I was born with a hole in my heart and had it repaired at age four. Which I found out is what caused me to have pulmonary hypertension later in life. When I was thirteen I ended up having pneumonia in both lungs and it just kept getting worse and worse. It got to the point where whenever I went to the local hospital, they would immediately take me back because my oxygen level would drop to the seventies. They kept telling me it resolving pneumonia and keep taking the medicine and rest. So, my mom ended up taking me to the University of Virginia (UVA) hospital and it was there when I was diagnosed with pulmonary hypertension.
They admitted me and tried medication after
medication but none seemed to work. My mom asked one of the nurses what
was going on and he told her that he wasn't supposed to say anything but
they honestly didn't know because they were giving me medicine that
they used for full grown men. Finally the next day they found a medicine
called Tracleer that brought my pulmonary levels down. The medicine
worked up to ten years. Then I started going back downhill. The medicine
just wasn't working anymore so they ended up changing my medication
(I'm sorry I can't remember the name of it). I ended up having an aortic
aneurism and had to have another open heart surgery in 2010. It was a
long recovery but I finally got through it.
After all that, I told the
doctor that I just didn't feel like the medicine was working. So, I
ended up on a Veletri pump that I was on for three years. I had
headaches, body aches, chest pain, losing my breath, etc. My oxygen
level would drop to the eighties during the walk test at UVA. I went
through that for three long years after telling the doctors that it made
me miserable. Three long years of constant misery and aggravation
dealing with having to clean the site, covering it when taking a shower,
getting the line tangled up when I went to bed... and they finally
switched me to Opsumit and had my central line removed. Now I'm doing
good. My oxygen stays in the 90s and improved my distance in the walk
I know I was very long winded in this message but I did it for a
reason; no matter how hard the struggle, you can make it. It is hard to
keep your head up dealing with PH but just take it one day at a time.
Don't let life overwhelm you, enjoy it.