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

Hi Different situation very similar feelings. About 3 years ago I was told I had liver cancer and my only hope was a transplant. I was hesitant but was told that was my only hope. My biggest concern was the medications. I did not want to be on meds needed to survive , daily and for life. I had a few like blood pressure going in but nothing as important has my immune system rejecting my liver if I missed. Sounds dumb but it seemed like a shell game, unnatural. What about travel, an accident, forgetting, etc. ?
But I was told it was doable and the ridgeness of daily life saving meds was better than the cancer spreading. After my successful transplant in early 2024 (yeah God, yeah Mayo ! )

I was on 24 different meds, meds not pills.
But my caregiver wife was in charge at first till we got back to CO then I took over. Now 2 years later I am down to 10 meds. And may be down to five some day. But will alway sneed TAC. I take some in the morning and some at dinner. I can truthfully say I have not missed once in the two years. But have been told even if I miss one I would very probably be ok. While they are important TAC , or the immune suppressant they give you is the may be the most important every day. Side effects have been very minor (for me anyway) and it beats liver cancer (or kidney issues). Has not been nearly as bad as I expected. Not even close . Now it is just normal routine. Mayo is the best but I have a nephew working on his doctorate at NW and they are smart folks too. If I can do it so can you ! Very best of luck. (---:

@craigcraig
Wow, side effects minor! Thank you for that detailed description. May I ask how old you are? I’m 68 and struggle with the whole thing. I could have 5 more good years without the transplant…maybe. I refuse to go on dialysis. What do you mean meds no pills? Liver transplants are a big deal. Happy you were at Mayo. My main Nephrologist is there and she suggested I get on the list while I’m still healthy. I’m doing everything they ask and will keep my options open. Thank you!

Hi. Side effects very minor for me, other folks may be different but I have chatted with other liver transplant folks ( no kidney folks) and that is never even mentioned. The worst for me was headaches every day the first 6 months when I was on the highest TAC doesage before I started getting lower doses. Hum.... headaches for 6 mos. or liver cancer ? I am blessed to have had the opportunity to have had those headaches. Never have them anymore on my current dose. I am 68 was 66 at the time of transplant. Just me , two cents from the peanut gallery, but if you will need it within 5 years I would want to do it as young and healthy as possible but that's just me. I was on 24 meds. TAC, Fluconasole, eliquise, losartan, Plavix, Cardevaol, Valcyte ,etc ,etc, etc, was in total 24 different ones. Some one pill a day some as many as 4 pills or more a day. But I only needed to take them (still do) twice a day. Any time you want as long as 12 hrs apart and you don't play with/ switch the times. Best of luck getting on the list. The season for the transplant is not fun but the season may be short. Then you are good to go. (---: Prayers up.

@mrainne Your nephrologist is giving you good counsel, to get on the transplant list ASAP. There is quite a regimen to go through, and testing, to qualify.

You say you refuse dialysis, but remember, you can change your mind at any time. The alternative to dialysis is a transplant, or do nothing. For me, I am not eligible to get a transplant due to my blood cancer, so I am on dialysis for the rest of my life.

My husband had a kidney transplant Oct 2016, and is doing very well. Yes, he is on several medications, and he takes them 8am and 8pm. He has forgotten to take them less than 5 times in all those years. He was 61 when he received a deceased donor kidney, and was on dialysis for almost 6 years before that. As he has said, those anti-rejection meds are what helps keep him alive. It is a serious job to take care of your new organ! When he first had the transplant, there was a laundry list of meds, and lots of testing as they adjusted things to him and what was working. Even now, there are minor adjustments. But a lot fewer meds! Your transplant team will be doing a lot of questioning to you, and want to know that you intend to be medication compliant.

Keeping your options open is a good thing. I am really glad to read that you are looking into everything, and wanting people to relate their stories.
Ginger

I'm not sure what drugs they give to transplant patients these days but I have been on prednisone, imuran and lasix for 46 years. My brother, who also had a kidney transplant has been on cyclosporine and prednisone (not sure what the other ones are) for nearly 40 years. Before my transplant my body was full of poison. I was very sick. I had at times excruciating pain in my jaw when I ate. I had insomnia, migraines several times a week, and dry heaves every morning (sometimes on my way to work!). When I woke up after my transplant all my pain had disappeared - it was like a miracle! No more headaches, vomiting, insomnia or pain when I chewed! (I was only on dialysis once right before my transplant). The side effects from Prednisone (like puffy cheeks, hunger and mood swing) will go away as your dose is lowered. I don't like taking drugs either but it is has been worth it to live without pain and have a quality life! (well, except for old-age kicking in!). Everyone's experience is different depending on where you're at in your life. I was only 23! Wish you the best!!!

Yes you will be on lots of meds at first I had 26 different ones including Keppra because I had a stroke a brain bleed and a seizure which I was on for 2 1/2 years but after 3 years post I’m only on 4 and ones getting taken off and get used to many many blood tests for years , it’s going to be a part of your life forever but at least you have one

I can certainly understand your initial reaction to having to take anti-rejection drugs, the rest of your life. This is not entirely on topic, but I do want to mention that yes, you do need to get on the list, but there is more help than just the deceased donor list. Finding a living donor is a whole other system. In fact, if you have someone willing to donate a kidney to you, they don’t even have to be a match because they can give their kidney to someone who is a match and then that gives you a voucher to receive a living donor from someone who matches you. It’s a lot to take in all at once. When you have a moment, check out the National Kidney Registry. Best wishes.

I had my kidney transplant in June of last year. I was on a load of meds post surgery. Several were for 4 to 6 months only. Was on TAC and Mycophenolate. Had to hold the Mycophenolatedue to low white blood cells which caused the BK virus to rear its ugly head. Put me on Prednisone and IVIG.

Now onto side effects. I had primary tremors in my left hand for about 25 years (I'm 74). Left hand is now much worse and I also have tremors in my right hand.

Mycophenolate can make you susceptible to Squamish cell cancer. Had 5 pre-cancerous spots removed before the transplant. So now I have a standing appointment with my Dermatologist every 6 months.’

Good morning,
I've been on tacrolimus 4 mg daily for 5 years now. I have minimal side effects. Probably the most annoying side effect for me is I have maybe two I guess would be runny nose, constant runny nose and I get sores in my mouth and my nose. But I don't get any of the other side effects that I hear some people get. For me personally, the worst part was the prednisone that they had me on at the beginning of my post-transplant journey but once they took me off the prednisone everything was okay.

I wouldn't fear the anti-rejection drugs. They can have some side effects but generally they are manageable. I have had 3 kidney transplants spanning over 30 years. Wear sunscreen, watch what you eat, stay active, be cognizant that you are immunosuppressed so stay away from sick people and keep updated on vaccines and try to stay healthy. You start on more medications right after transplant but will take fewer the farther out from transplant you are. I don't want to minimize them as I have had BK and CMV virus, low white blood count and platelets, numerous skin cancers but any day not on dialysis is good and I generally feel good.
I was on dialysis once for about 6 months and didn't care for that at all. It's best to transplant before dialysis if you are able. It's good you have a live donor. If your live donor isn't a match for you a paired exchange may be an option. I had my transplants in Rochester, and my last transplant was a paired exchange. Best of luck on your journey.