|Adam with Mary McCarthy, |
Clinical Nurse Specialist
The day I was diagnosed I was sent to sick kids hospital in Toronto. I pretty much lived in the hospital after that. It was hard being 12 and having PH. As my friends played I sat. They continued in school and even that was to much for me. I was in a wheel chair and on oxygen. The oxygen was a pain to have with me, plus being stuck to the wall sucked. Then they started me on flowlan. I was the first child in Ontario on it. So it was a little nerve raking. The fact that it had to stay cold and be changed daily was quite taxing on my family. I also developed an allergy to all tapes so they could only use gauze on me.
My health continued to decline and I was able to do less and less. I got the call for my transplant August 23. I was now 13. It was 3:00 in the morning and I was whisked away to sick kids. (One of the few times I was home. Of course). After my surgery things became amazing! I could breath, run, play! It was truly amazing! My life was no longer on pause. It aloud me to grow up! I got to meet my beautiful wife and become a father to her daughter. I was only taking anti rejection medication and that wasn't to bad. Besides the fat face from prednisone.
After 13 amazing years I developed a cough. After a few tests the doctors found out that I had chronic rejection. This was heart breaking and terrifying! I was so happy and it was all going to disappear right through my fingers. But then the doctor gave me a glimmer of hope. I was told they do re-transplants. It was scary but it was something. I could keep my family, my life wasn't over. Shortly after my now wife and I decided to try and have a child. I was already a father to a little girl that may have not been mine from blood but she was and is a huge light in my life. So why stop living? We were blessed with a son!!! All though out my wife's pregnancy I got worse. Everyday it was getting harder and harder to breath. When I saw him I forgot about it all. He was perfect. And just one more reason I had to survive!
My wife and I also got married in this time. To see how beautiful she was walking down the isle was incredible! She truly is my other half. My health was getting incredibly bad. Well you wait for your transplant you have to do phsyo. It's to keep you as strong as possible. That way you recover fast after transplant. It's just some light weights, stretching and walking on a treadmill. Well by the end I was barely doing 5 minutes on the treadmill. I could barley walk up 2 or 3 steps. I used a walker and refused a wheelchair. I never wanted to go back in one again. My breathing was so bad I was burning so many calories I was down to 105lbs. That's coming from about 210lbs. Every breath I took reminded me of having PH again. It hurt so bad. Every minute of every day it hurt. After 1 false call the day finally came. I got my lungs! 12 days in the hospital and I got to go home. I pushed hard and recovered fast! Now as I sit here healthy and being able to breath once again I will never forget how lucky I am. I love my life! I am extremely thankful to both my donors. Organ donation is incredible! I get to be a dad, a husband, son and friend.