Kidney transplant medication side effects

[Highgfr]

Hi Everyone... hope you are all off to a great summer. I've been going through testing to see if I can be put on the kidney transplant list. They do SO many tests! Whew! My gfr fluctuates between 11-13 and has gone to this number fairly quickly. After meeting with the pharmacy side of a transplant it has left me with so many concerns about all the side effects of the medicines and the heavy doses required for the first 6 months. Can anyone please share with me what they have experienced the first 6 months after transplant and what side effects you have had. How you've worked though h\them ad are they any better? Trying hard to come to terms with all this information and risks involved. Some of the medicines have horrible side effects and I am diabetic ...controlling my numbers with diet right now. THANK YOU ALL SO MUCH!

[Darlenia]

Hi! We understand your concern. My husband, who received a transplant nearly a year ago, also had misgivings about the large number of medications he was being given. But he handled them well! It's amazing, really, since he literally took well over 20 meds daily. In his case, he received a deceased donor kidney with conditions so some of his meds were given to keep those issues from affecting my hubby, others were immunosuppressants, and the remainder were necessary for my hubby's own conditions (high blood pressure, etc.). The total number of preventative meds was very high initially because no one, of course, wanted my hubby to reject the kidney. But they quickly scaled back the total number over the weeks and months - it didn't take 6 months for most adjustments to occur. The only issue he faced very early on involved a laxative that they quickly withdrew. But the one thing that you likely will have to accept is a return of your diabetes. My hubby, like you, had everything controlled with diet even while he was on peritoneal dialysis. However, his T2D returned with a vengeance immediately after his transplant because of the immunosuppressants. (Even though weight can be factor in diabetes, his weight has stayed the same as always - he's stayed slender.) While they did nothing to correct his sugar levels early on, he was eventually put on insulin and remains on insulin today. That was the most disappointing thing in his odyssey. Nevertheless, we are thrilled, at this point, with the transplant. It's so much better than dialysis. And he feels the normal, like he did prior to kidney failure. (While shopping for new shoes today, he was thrilled to get back into his normal shoe size.) So what should you do? Should you plan on taking lots of pharmaceuticals? Will they make you miserable? No one can tell you that until the transplant happens. It depends on your own underlying conditions, the health of the donor kidney, the compatibility factors of the match, etc. Sometimes, too, an unexpected complication can occur during the transplant requiring intervention. But, bottom line, some individuals take very few meds, others take many. In both situations, outcomes (quality of life and lifespan) are generally very positive! Truly, transplants have come a long way over the decades. Simply take matters one step at a time, discuss your concerns with your team, and evaluate as things unfold. Blessings.

[Highgfr in reply to Darlenia]

DearDarlenia..... WOW. What an amazing journey, Thank you so very much for sharing your sweet hubby's experience about his transplant. He is quite a trooper and so are you. I am sorry his diabetes returned and must say it gives me great concern. It is so hard to keep diabetes under control with diet and exercise so to have achieved that and a good weight has been a huge goal of mine and has taken a lot of effort and is well worth it. Got my A1c down to 5.7 without meds. To think of high blood sugar again is just overwhelming. And the complications it, in itself, brings. Even though it is easy to see the benefits of a new kidney, " how" can the new kidney survive with all the strong medicines and high sugar levels for months? Has your husband had any damage to the new kidney during this first year? Did the medicines make him nauseated and did he handle prednisone well?

Thank you for sharing about his blood pressure. Mine is finally well controlled and it took forever especially with low kidney function.

A HUGE Congratulations to you both for enduring and making it through this first year. And thank you for being such a help and for being so willing to understand. I hope his gfr is holding high and the reduction in medicines will make it easier for him. How is his immune system since taking the meds? Can he go out to restaurants or get around people? Is it hard to manage what is safe to eat and will not cause infections?

Thank you again for being so kind to answer these questions. It is helping so much and my sweet husband has had these questions and concerns too. Bless you for being so understanding and for your honest advice .💖

[Darlenia in reply to Highgfr]

Sure! I'm happy to answer your questions. How can the new kidney survive for months with high sugar levels and strong medications? That's a great question, a new kidney can apparently withstand the assault for a short time. Thankfully, the uncontrolled high sugar levels only lasted a few weeks as they brought down the levels of immunosuppressants and so forth while watching the effects on glucose. Once optimum levels were established, they turned to insulin for my hubby. In your case, you "may" not need to worry about your diabetes at all - it seems to me the closer the kidney match, the less immunosuppressants and related are prescribed. While very disappointed that my hubby had to go back on meds for it, we are thrilled that we can again hop on planes carrying only insulin pens and not heavy and bulky dialysis equipment, not to mention dealing with the boxes of solutions going with it. Has my hubby had any damage to his new kidney over the year? We are beyond happy that his new kidney has functioned very well and is holding its own. Mind you, he was given a compromised deceased donor kidney. The donor was older, was deceased for a time before being found, and had a yeast infection, etc. (Many of these are now reclaimed instead of being discarded.) The compatibility rating between my hubby and the donor kidney fell in the average range. We're glad to say that his egfr with the new kidney remains steady in the high 50s and his creatinine is around 1.3 and 1.4. The transplant team says everything continues to look very good. How long will this last? Who knows. We understand it takes diabetes, type 2, around 15 to 20 years to do big damage. However, lots can happen with medical advances, so we no longer worry about the "what ifs". We were also told the vast majority of those on dialysis as well as those receiving transplants are diabetics. So teams are acutely aware of it and know how to work with the condition to minimize effects. Has the new kidney received any damage during this process? The only problem inherent to the new kidney was that its ureter developed a leak which had to be stented (a complication that only occurs in only about 2% of cases). The stenting procedure was successful. How it developed a leak is a mystery - it may have occurred during rough removal, maybe during placement, maybe the tissue simply developed a leak on its own due to death, etc. Did the transplant medication make him nauseous and did he handle the prednisone well? Interestingly, he didn't become nauseous and the prednisone also has never bothered him. The only med that caused issues was a laxative and that may have been enhanced by the additional pills he was taking. Food went right through him. They should have asked him first, my hubby has never had constipation issues - not even when he was on dialysis. So keep in mind that hidden in the initial pile of pills you see, may be a laxative. We've been grateful to see that the mountains of pills he started with has plummeted to a very reasonable 8 in the morning to even less at night with a good number related to his own personal conditions (prostate issues, high blood pressure, etc.) Please bear in mind that the lower number includes supplements, too, like Vitamin D.

In reviewing everything, we've been simply amazed at our outcome and we are so very grateful. Everyone's journey is, of course, his or her own. The trek may be easy or hard but good things generally happen if one hangs in there. Kidney teams are very comfortable working with all sorts of moving parts and assembling a good result. Age is one of those considerations too. My hubby was 71 at the time of the transplant and things can (and did) happen. But we went for it, rolled with it, and here we are. So very blessed. That said, it's nice you're examining issues. We went in thinking everything would be a breeze, but things can and do happen. Being mindful is a good thing. Simply keep the prize you desire in focus as you lay your plans. I suspect good outcomes are in your future too.

[Highgfr in reply to Darlenia]

Thank you so VERY much. You have shared such amazing information and me and my husband both are so grateful. I will print this and keep it in my folder. So thankful he is holding his own and his medicines are reduced. And thank you for the info about the laxative. GOOD to know. ; o )). You must be so proud of him and are quite a trooper yourself. You make a wonderful team! You are an inspiration!!!❤️

How does he watch out for infections? How do you pick your foods and are there limitations or activities that cause high risk of infection? Thank you again!

[Darlenia in reply to Highgfr]

Thank you for your kind words...you're a trooper yourself! How does my hubby watch out for infections? Initially, because of the high levels of immunosuppressants, we were told to use sanitizer, to wash hands often, to stay away from crowds, to use good hygiene, etc. - essentially the same things we were told to avoid catching Covid. Throughout, the dialysis center, and now the transplant center, has kept my hubby current on all vaccines, etc. (Down the road, we were told to stay away from "live virus" vaccines since he could catch those.) Regarding food preparation, he was told to cut out all questionable and bruised areas on fresh fruit and veggies, to heat up cold cuts (deli meats, etc.) before ingesting, and to keep away from soil (gardening, etc.) because of the bacteria and other organisms found in it. Interesting, my hubby has never caught any infections from any of our actions - he's only had a uti from the "man issues" he's been having which was corrected via meds. However, he did catch a cold which he promptly passed on to me. He was told by the transplant center to use a certain type of over-the-counter decongestant. (Our transplant requires all meds be approved/cleared through them.) He got over it quickly; his immunosuppressants weren't at a very high level anymore. How do you pick your food? We have no food restrictions other than the usual ones for diabetics and possibly star fruit (I'm fuzzy on that one). Some transplant centers ask their patients to seek approval before drinking herbal teas, but ours didn't bring it up. Do we have any limitations on activities due to fears of infections? No, our transplant center essentially told us to use our own judgement. Before my hubby was released from the hospital, our transplant center scheduled a "sit down" session with us regarding the "dos and don'ts" and addressed any questions we had. Looking back, we're a couple who doesn't sit at home all day. While we prefer outdoor activities, we also visit restaurants, coffee shops, museums, etc. We've also recently booked flights to Colorado to see our daughter this summer. We have masks and sanitizer for use everywhere and keep a good stash of things on hand in our car, in my handbag, etc. We get out - almost daily. Throughout, we are simply very mindful of our surroundings. I'd like to add it's a wonderful thing to be living in the 21st century. Medical technology has made great strides over the decades - the immunosuppressant are exceptionally refined and targeted, reducing toxicity and rejection. My hubby truly feels good - even normal. It's a good century to be in to receive a transplant. And I'm sure things will only get better as time moves on.

[Highgfr in reply to Darlenia]

Thank you again for such amazing information and congrats on going out to see you daughter this summer. Hope it is a fantastic trip for you both!!!! And you have been SO helpful in explaining each step. YOU should write a book...it is so needed to be there for those deciding and then going through a kidney transplant. There are medical sites that share some, but not anything like this. To be able to get a glimpse into the actual steps involved and challenges and successes, is priceless. PRICELESS! Thank you so much for being so open and may you and your sweet husband continue to have complete success and blessed health. I am sure there will be other questions along the way as we continue this journey towards transplant....thank you for making us feel so comfortable to ask questions and feel cared for... so very grateful.❤️

[Darlenia in reply to Highgfr]

Thank you! I'm always happy to share our experiences with you or anyone. You're wise for checking out now your path going forward! With all the research you're doing, your team will definitely appreciate you. We were far less educated at the time - we had no idea our willingness to accept a kidney with conditions would move us along quickly and thought we had time to research matters. Surprise! Feel free to reach out any time if you find yourself questioning things, etc. I'm always here for you on this page, via email, etc. Blessings!

[WYOAnne NKF Ambassador]

First, please know that we are all different as far as our reactions to immunosuppressants. That being said, you really need to work with your doctors. They start giving recipients a standard dose of the meds and change doses according to your blood level of the meds.For me, I had horrible diarrhea. So docs reduced my dose. I still had issues and was found that I could not take generic. I take Neoral (cyclosporine) and Myfortic (cellcept). There is a little different formulation in the generic brand. When I take name brand Myfortic and Neoral I had no GI issues. But generic within a day caused the diarrhea to return. So, my nephrologist wrote a letter stating the need for name brand to my mail order pharmacy.

I am now 22+ years post transplant and have no issues with the meds.

My advice is to be an advocate for yourself! If you have issues with the meds, talk with the transplant docs. It is there specialty and help you. Even talk about this now once you get on the transplant list.

Best luck! You can lead a wonderful life after transplant!!!

[Darlenia in reply to WYOAnne]

Completely agree with you. Advocating for oneself is very important. My hubby also had direct access to high-level pharmacists - they routinely came into the room and to meetings to adjust meds, etc. It was interesting to see the interplay - truly "alchemy" played out in front of us!

[Highgfr in reply to WYOAnne]

WOW....thank you so much for your advice and for sharing with me. 22 years. That is incredible. Congratulations... SO happy for you. Glad they were able to get the meds right. What a blessing to hear how good you are doing and am so very grateful for your kindness in sharing. Have you had to take prednisone after or during the 22 years? Did it have any side effects? And, have you had the same kidney after transplant for 22 years. What is your Gfr after all these years?

We have been told there are so many things you can't do after transplant. Can you tell me what your limitations are to avoid infection in the day to day living and doing? Eating limitations? My husband and I have no idea what it will be like post transplant in regards to avoiding infections with a lowered immune system. Hope it's not too many questions. Thank you again! 🤩

[WYOAnne NKF Ambassador in reply to Highgfr]

first I did take prednisone for the first 5 years. When I started having issues, I was weaned off of it. If my creatinine had increased I would have gone back on a daily dose.I had a deceased donor transplant in 1999. I was told that it would only last 10-12 years, and here I am 23 years in October. My donor was a 4/6 match for me and my kidney is doing fantastic. I have never known my GFR, because they didn't do that in the '90's. My creatinine has been stable at 0.9-1.0.

The first few years I did have to worry some about getting an infection. Every time I got a fever I had to call my nephrologist and he ordered blood work. I never have had CMV or ... so that was all a concern. The first year I was in the hospital twice with a fever of unknown origin. I know I was worried with COVID but was all aok. The Best ADVICE is to always talk with your doctor about problems and any questions or concerns. That is the one thing I learned early on. You have to speak up for yourself. This is your health and your life!

When COVID started I did get the vaccine x 2 and also 2 boosters. My doctor also had me get EVUSHELD, which is a preventative for transplant recipients. It is a type of monoclonal antibodies.

Now, I really do not worry about getting an infection due to being immunosuppressed. I have a fantastic doctor and takes good care of me. I always emailed/called him if I have an issue.

We travel all over US and have taken vacations to Europe, Mexico and Caribbean.

I had a career in Gerontology and felt that I really helped seniors. Now, I am an Kidney Advocate, a Peer Mentor and an Ambassador for HealthUnlocked all with the NKF. I want others to have the same life I have post transplant.

Please know that you can email me anytime. I am not an expert, but will help with what I know.

Take care!

[Highgfr in reply to WYOAnne]

What an amazing journey. Thank you for sharing your story and how to coped with it all. Glad you were able to get off the prednisone. And a HUGE congratulations on your kidney and all the success. THAT IS AWESOME!!! And hear you are advocating for so many... God bless you... what an incredible service to others. Thank you also for sharing about the EVUSHELD vaccine. I will ask about that one.

If I may, can you tell me what side effects you had to prednisone and how it affected you? Or any other of the medicines. Did they make you sick? And what approach to food did you take when it comes to cleaning lettuces, vegetables, ice, meats/seafood, and eating or drinking anything out at restaurants and being around people and pets post transplant? Seems so complicated. *** Did you have to take a lot of vaccinations pre-transplant? And lastly, did they wean you off some of the meds in the first few months? Have you had a lot of UTI's post transplant? Thank you ever so much!

[horsie63]

You might check with your transplant team. The people at KU Med sent me a video I and my husband had to watch prior to the first meeting (it's Sept 19) and at the end was a video going over the post transplant expectations. Your center may have some thing like that.