cfdansir

Good question. My biggest challenge now is warding off rejection. Even though my lungs don't have CF, they can still get infected and struggle with surviving.

But post-transplant is mostly about prolonging the start of rejection for as long as possible. Rejection is now what I will most likely die of. Average life span post-transplant is 5 years. Less than 10% make it 10 years. So we have to be very careful about doing our meds religiously and living cautiously as to not get infection.

Lung transplantation has the lowest survival rate because it's the only transplantable organ with open air access (from breathing outside air). Transplant is not considered an extension of life but rather an extension of quality of life. Trust me, living without oxygen and being able to be active in the world makes this process totally worth it even if my life span doesn't increase much.

Oh man, such great questions. I can definitely tell I'm talking with another CFer! Yeah my medication amounts go up and down depending on prograf trough levels and rejection requiring more prednisone. Always an adjustment. Took some time but I got the routine down now.

I was hospitalized for 17 days at UCLA after my transplant.

The first moment without oxygen: funny story actually- I didn't want to take off the oxygen on the morning of day 2. So that afternoon my nurse Katelin said, "Hey Adam you know how you didn't want to take your O2 off? Well it's been turned off since this morning. You've been breathing with 100% air for over 6 hours now. I took off my cannula, handed it to her, and wept. I couldn't stop crying. I never thought that would ever happen again. Unreal man. It's funny though, I kept my O2 cannula with me as a safety net for weeks even thought I never used it. Took some adjustment. I still reach for it at my nose or reach for my tank when I get up. Crazy!

I still can't believe I don't use any of the machines at my place. No vest, no nebulizer, no bipap, no feeding tube... the list goes on. I couldn't be more grateful for this amazing gift I've received!!

On the day of my transplant I had 20% lung capacity and weighed 114 pounds. My current lung capacity is 91% and I weigh 137. I had 10 weeks of physical therapy for 90 minutes at UCLA twice a week. They start you out slow with the treadmill, bike, arm and chest movements, etc. And only let you lift up to 5 pounds.

I'm still working on building up the stamina at the gym(treadmill, bike, etc). Can't dance or workout hard with weights and stuff for the first 6 months after transplant. But once December hits, it's on!

Well first of all I think it's awesome that you were able to stop using cold turkey like that. I had tried that many times and failed many times. This is the only thing that has worked for me so far so I'm gonna keep doing it.

I wasn't saying that people can't quit like you did, so I'm not sure where you got that from my post, but more power to you man. The 12 steps have also helped me find a new way to live without so much anger, fear, and resentment. If you don't feel that is something you need, more power to you. Not trying to teach brother, just letting you know what's worked for me. Congrats on your 5 years!

Thanks! Well, I love the arts. I try to stay involved as much as possible today. I am also currently working on a one-man show for next summer which is keeping me busy and happy!