What's it like adjusting to antirejection drugs/immunosuppresants?

Posted by mrainne @mrainne, Jan 30 9:20am

Hi everyone!
I’m in the process of evaluation for a new kidney. I’m not on dialysis, never have been and my eGFR combined with C Cystatin GFR is 20. I’m nervous about the anti rejection drugs. My team is at Northwestern Memorial Hospital in Chicago. I have a living donor but not yet approved. I know this is a long process. My kidneys would likely last a few years as is. I can’t feel comfortable of lifelong anti rejection drugs.
Could you share your experience?

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slow1 | @slow1 | Feb 9 9:09am

I have had a few things going on since my liver transplant almost 2 years ago. Celcept if your younger is different than when your older. They thought after almost a year and a half that I could get off my Celcept, if they do make sure they monitor your blood very closely. My Alk Phos, Alt and Ast levels skyrocketed took almost 6 months to regulate. Started having a few Heart issues. Heart rate has been slowing down to 39 during the day. There are not a lot of studies done on Tacro effecting the heart but there are some if you want to search. I wish I had the study my wife printed but I'm sure you can find it on google. There is also an alternative for Tacro but that's a discussion for someone else.
I got the flu 6 months after my transplant and I think my wife and kid had it worse. I did get the cold 2 times in 2 weeks or something similar to a cold. Otherwise I have been feeling good.
I have heard of people being able to get off Tacro even had my team looking into it it can be done but long term results from what I have heard lead to failure.
The relief from the pain the ability to live your life again and truly appreciate what you have been given is worth it. You will have problems I have seen doctors just about as much now as before just no ER visits. Small things can be big things if you feels something is wrong see your DR. Huge suggestion I put things off a couple of times bad idea.