Julia Feitner - Since 2008
In February of 2008, when I was 34 weeks pregnant with our second son, I was diagnosed with an incurable, progressive and terminal condition called Idiopathic Primary Pulmonary Hypertension (PH). In retrospect, we can trace this illness back to at least January of 2004. While there are a lot of causes for PH, the doctors have no idea why I have it. At the time of diagnosis, I had to crawl on the floor to put our then 3 year old's toys away, and wasn't able to walk a flight of stairs without struggling to stay conscious. I finally decided that this was something more than just "being out of shape," and admitted my struggles to my obstetrician, who admitted me immediately. Five days later, I was diagnosed with PH, and the pulmonologist who diagnosed me said that he didn't expect me, or our baby to survive. The doctors couldn't agree if they should try to save my life, or the life of our son. Eventually they decided they couldn't treat me at all.
After several "big" PH centers declined to treat me (they also had "no hope" for our survival), UPMC's Magee Hospital was willing to try. Twelve hours after diagnosis I was transferred to Magee. Two hours later I was intubated because I could no longer breathe on my own. Less than ten hours after that our son was born in an ICU unit at Magee. There were so many hospital personnel crammed into the room fighting to save our lives, that they actually broke the doors! Our son was born early, but healthy, with no sign of oxygen deprivation. It was a miracle!
Later that day I was transferred to UPMC's Presbyterian Hospital & started on Flolan (a continuous IV that goes straight into the heart). After several weeks of being a patient in 3 different hospitals, 2 ICU units, and having my husband be told countless times by various doctors that he "should prepare for the end," I was finally discharged. I went home with a continual IV, various pills, continual oxygen, PH, end-stage heart failure, a busy 3 year old, a newborn, and barely enough strength to make it from the car to the front door. But, I was alive - and I had hope for a "better tomorrow."
Over the past several years my health has been a yo-yo. I would begin to get better, and then a medicine would stop working for me, and I would plummet again. We would change medicines, and the process would repeat. Finally in October of 2010, I was out of medical options. It was time to be placed on the lung transplant list. At that time I was fortunate to be "sick enough" to qualify as a participant in a particular clinical drug trial. This trial has done wonders in terms of my ability to breathe, live a more "normal" life, and be a better wife & mother to our two active boys. I am currently doing the best I have since my diagnosis. I am alive today and doing as well as I am by the Grace of God, and because of PH research!
Our family will participate in the PHenomenal Hope 5k here in the Pittsburgh area in April to raise PH awareness and money for additional PH research, and I am pleased to be the Race Director. While I can't even walk 5k, I am excited to help with the planning process, and I will do everything I can to raise awareness of Pulmonary Hypertension and funding to help find a CURE!