Chronic Rejection in Lung Transplant


New member
Hi! My first time posting. Just a little about myself.

I'm 35 years old, Male, Happily Married and 1 toddler, who keeps us on our toes.
Had my first transplant in 2016 and due to chronic rejection had to get a 2nd transplant in March of 2014. First transplant was great for the first 5 years and the process was pretty smooth with a couple of hiccups. The second transplant has been fraught with infections, pretty much one after the other. Every time my lung function would drop a little more and never quite recover to the point before the infection. Being on antibiotics really messes with my digestive system (as many can relate to) and thereby losing weight and not being able to gain it back.

I had the fundoplication (aka Nissen) procedure done to prevent acid
re-flux in 2010. From the start I had major issues with the fundoplication (I got a 360 degree ring wrap). Food would get stuck every so often, didn't matter how well I chewed. My diet dwindled day by day in terms of what type of food I could eat that wouldn't get stuck. Being that I could no longer burp when air would build in my stomach (which for some reason it does a lot of) and having no other means of escape it would pressure me to use the bathroom. Gaining weight had been a struggle from a young age and after the fundoplication it became even more difficult. In recent months it has gotten so bad I can't even maintain weight and am losing. To that end my doctor has finally agreed (after years of complaining about this), to reverse the procedure somewhat to a 270 degree ring wrap.

The main reason for my post; I'm in chronic rejection again and have gotten Thymoglobulin, Campath and now am doing Photopheresis all to try and stop the progression of the lung function dropping, which it hasn't. On a recent visit to the doctor, the doctor basically said that I've run out of options and almost no chance at a 3rd transplant (not that I want another). We have reached out to other doctors and transplant centers around the country with the hope of finding something that can be done for me that my be a new idea or trial that I can try, that might improve my lung function. Right now I'm at the stage of progression where going up a flight of stairs is a big strain, not huffing and puffing, but heavier breathing. 2 flights even heavier, carrying my almost 2 year old up 2 flights of stairs and I'm wiped for 2-5 minutes.

That's about it. Not sure what I'm looking for in this forum, but just speaking my mind to fellow sufferers.:)