The side effects of the immunosuppressants have significantly decreased my quality of life. I felt better in kidney failure before dialysis started than I do now at five months post kidney transplant. I am 49, and I have a healthy diet and I have been pushing myself to get 30-40 minutes of cardiovascular activity at least 4 times per week. I take care of myself very well. I feel like I am doing all the right things but for what? It hasn’t made anything better. Between the lack of sleep, the headaches, the mouth sores, the anemia, the chest pain, brain fog, muscle issues, inability to concentrate, covid, and of course the anxiety and depression that has arisen because of having to deal with all this, it all has me questioning if I should just stop my meds and let nature take it’s course. I thought I would get my life back with a kidney transplant. Instead it’s a hell that I wouldn’t wish on anyone. I feel like garbage most days because of the side effects. I am no longer me and this new person that has been created from all this, she is really losing hope for having any kind of a meaningful and happy future. I just don’t know what to do anymore but I know I don’t want to live like this, with almost no good quality of life, and basically dying a slow and painful death. Advice would be very appreciated. ❤️
Quality of life on immunosuppressants - Kidney Transplant
Quality of life on immunosuppressants
I am on my 4th month post transplant and also had the issue of lots of side effects. Monthly battle with gout, testicles at 4X for 3 weeks, nervous/uneasy and unsteady hands, insomnia (sleep at 50% of normal, then normal, then back to 50%), intermittent pain on the surgery area, weight gain (5kg now), mood swings, always hungry, bloated stomach due to required liquid intake, intermittent blurred vision and more.
But I knew they were coming - I researched all the possible side effects of kidney transplant before I chose this option (vs peritoneal). I was prepared for them
I also research on the side effects of my medicines (I asked my med team before the transplant). I was also prepared for them.
There were some unusual one not in any of my researched (testicles 4X, now our pimples).
I used this knowledge and my side effect and discussed them with my Nephrologist. Together we find options (change med, change diet, change exercise regimen, etc.). He provides the recommendation, I make the choice. Some of the side effects went away (gout, testicles, mood swing, blurred vision), the rest stayed. I learned to live with them - they came with my choice to do transplant. I have had lots of practice thru the years - I have HBP, tinnitus, vertigo and floaters for years - very uncomfortable and disruptive.
Meanwhile, I continue doing my short term plans (next 3 months) and updating my mid-terms plans (>3 months to 3 years). These activities keep me going and make me forget these side effects. And hopefully, time will come when all is well or I finally meet my maker.
Hope this helps. Take care, be well.
BTW: The cost of the surgery and these tests/meds/doctors fee are really financially draining - I don't have insurance and they are 50% more than what I was told (and saved)
The first few months can be hard. I am 1 year out and I am 54. Have you talked to your transplant team? They can change and adjust your meds. The lack of sleep has always been a problem for me. What are your underlying health issues? Maybe they aren't helping? Over time medication is decreased, so that may help. Have you tried meeting with a counselor or therapist? I hope you feel better soon!
I think this response was meant for Tallyn.
I am actually good, thanks.
Hello Tallyn, having had a successful transplant for 19 years I look back on the first year in particular as a time of change and adaption. You’re on high doses of immunosuppressants, you’re recovering from major surgery, and in my case I was on steroids that made me put on weight and changed the colour & thickness of my hair. I was a very different person. However, over time my immunosuppression was reduced, I came off steroids, I recovered physically and mentally and adapted to my new life as a transplant patient. It took years of my drug levels being tinkered with before I settled into what is now a successful regime. I’m very fit & healthy now and grateful for what I’ve had compared to the chronic renal failure I was enduring. My side effects reduced when my immunosuppression was reduced over a number of years.Give yourself a chance, talk to your transplant consultant, discuss your medication, and accept that it’s a journey that will have its ups & downs.
We are all different and no one person will have the perfect experience, certainly not in the first year. Your body and mind are adapting.
You’re already doing some really important things to help yourself, exercising & eating a healthy diet.
Fingers crossed that the ups will definitely outweigh the downs for you as time moves on.
Give yourself and your transplant a chance.
Hey!
What was the reason that caused ESRD with you, may I ask? 19 healthy years is everyones dream on this platform. Congratulations to you 
Hi,
Thanks. I was born with Reflux Nephropathy but this didn’t affect my life too much until I had my transplant when I was 33 years old. (I had unsuccessful surgery when I was 9 to try and correct it but that was in the late 1970’s and I understand they wouldn’t even try to re implant ureters these days). I did have regular infections and antibiotics though as a child.
I think I’ve been very lucky with my transplant. I try to do as I’m told, stay fit, and take the tablets every day!
How about you?
Unfortunately I have primary fsgs. The worst part of this disease is that it attacks to new kidney with 30% chance. On the second transplantation, this rate increases to 85-100%. So I feel like there is no one final solution for my disease, even transplantation does not feel assuring.
I have volunteer donors in my family, but even the transplantation is not helpful with the risky nature of this disease.
If I will be luck enough, and the disease does not attach again... Then I hope good days will be mine, too
Hi...i had my transplant in august so a newbie. Apart from sime very painful uti's in the first month all has been going well. My original issue was the same...reflux but with duplex collecting system. My ureters were reimplanted at 13 (1983) and resolved the reflux issue, but of course not the ckd and i was still prine to iti's. I wanted to ask you about why they wont perform this surgery these days. I hadnt heard this. I thought they just did it in infancy instead.
I have to say that I’m personally not medically “in the know” about this procedure no longer being done in the UK … it’s what I heard my UK NHS renal consultant tell a group of medical students while I was explaining my renal failure background (so this was just prior to 2002).
He stated that they wouldn’t have reimplanted my ureters now.
I dont know. Dr. Google says it is still performed and I know of someone recently who has had it done. Maybe its a very new thing
I absolutely know what you mean. The reason the dose is high is because people don't take the recommended dose and everyone suffers for it. Another problem is that most nephrologists go from the book or doctor ticker tape, sort of what comes over the bottom of the TV instead of seeing everyone as an individual. Some of the problems with the drugs we are just going to have to life with. However, since you feel really miserable, convey that to your doctor just like you wrote it here. Mouth sores are unacceptable. You may be allergic to a medication, like I was to Keflex and it caused the same thing. Feeling that bad is unacceptable. There is a possibility your kidney cannot filter out all the medication and it is building up in your system. I went through that before and was stripped of most meds until I returned to normal. That situation usually comes with some scary mental health issues. You didn't mention that, so doubtful it is the same thing. Did you have Covid or is it just another stressor? Tell them just how you wrote it here. Get tested for BK/CMV and have your Nephrologist figure out if it is medication or if something else is going on. Has that been done? I feel crappy today, with pain issues caused by all the prednisone, but 30+ years ago after the transplant, I felt great. I was on dialysis for 3.5 years before and at the end of that time I had run out of access options, was barely able to get in a good treatment and felt awful. This is not the time to feel terrible. Please speak to your Nephrologist and let us know what is said. Good luck and stay on this feed.
Medication doses were set on data from well controlled clinical trials. Clinicians do not "hike up" doses because some patients are not compliant.
Hi, Tallyn--It can get better. You'll adjust eventually (which I know isn't much comfort in the moment). I'm 3.5 years post and remember well the hell of the first year and more. We all have different experiences. I got off prednisone as soon as I could (with dr approval); that helped. For me, transplant has been better than dialysis in the long run. Good luck. Keep us posted.
I have to agree with others. These issues should improve with time. I had the same doubts and eventually resolved them with the help of this forum and my team that I had made the best decision. I was on pd for 5 years and very content and when I had my transplant I had to face issues that I never had on pd. But the trade-off was worth it. It is true I became more anxious and the medication was draining at times but after a year I feel things are getting better and the new freedom was worth the cost. And thank God for medicare. There may be future ups and downs but I feel there would have been those if I had stayed on pd. Life comes with no guarantee but it's better than the other option. Take care and keep reaching out and sharing your feelings.
First thing, have you shared what is going on with your transplant team? They can help, but you have to let them know. My immunosuppressant dose was changed many times that first year. They also gave some meds to help with sleep, etc.It also helps if you can go back to your hobbies. Maybe there is a Organ Donor group that you could volunteer with. I am a volunteer and a public speaker with Donor Alliance of WY. We have events that make the public aware of how important organ donation is. I also speak and let others know my transplant story.
Start a bucket list - things you have been waiting to do....
Please get help with your meds from your doctors. Headache and anemia could be a sign that you are on too high a dose. Once on the correct dose for you and your body adjust to these meds you will be surprised at how wonderful life can be!
I will be 22 years post transplant in October. My husband and I travel, visit family, grandkids, and explore.
Get the help you need and see how they can help you enjoy LIFE!
DearTallyn,
First of all can I, without meaning Any Sarcasm, say 'You poor unfortunate girl'. Secondly have your Doctors/ Hospital Consultants been 'monitoring' you blood/ urine results? It 'sounds' to me like 'they' have let 'things' Slide- rather more than somewhat.
Yes the 'Side effects', of Immune- Suppressant Drugs, can be Rotten but, by now, you SHOULD be 'Feeling Better'- certainly better than you did Pre-Dialysis!
As regards the 'Mouth Soreness' I was given a, kind of, 'slightly thickened Banana Tasting fluid, that was Anti Fungal in nature'. I. indeed all of us, were encouraged to use this regularly, in the days Post Transplant. (actually not a Problem, it was lovely!)
I know that COVID has made 'things' more Difficult but you, really DO, need to contact your own Transplant Team Tallyn.... without delay. i know that we are all sending our
Very Best Wishes
AndrewT
Thank you to everyone who responded with their experiences and gave encouragement, I sincerely appreciate that. So I went to the clinic today and found out that my mouth sores are likely a viral infection, as I had a slight fever, worse headache than usual and generally an unwell feeling all week. My wbc count was low as well. They took a swab to test and spoke to me about CMV. I won’t get the results until next week they said, and I hope it’s nothing serious like what I read about CMV. It’s hard to have hope when more side effects just keep popping up. But I keep pushing forward , somehow…
I heard or maybe I just focused on, the good stories, normal life, better energy etc. I am definitely not having my normal life. After 4 challenging months my energy was better than before; I thought things turned around but now my 6 mo bx showed signs of rejection and I’m on 100 mg prednisone taper. I’ve since heard that it takes a year to adjust post transplant. Guess I will have to have patience and learn not to freak out or cry my eyes out with every bump in the road. It’s hard for me to move the focus of my life from this kidney situation of mine and focus on the the good things but I think that’s the only way I’m going to make it through. Please be gentle with yourself; iconsider talking to your doctor or np about how you are feeling. Keeping you in my thoughts,
Josie120
I'm so sorry for all you are feeling and going through. I sympathize. I'm only 7 weeks out and it's been such a rollercoaster emotionally and physically. I have to say that as an RN and someone who likes to research EVERYTHING, I was still taken by surprise at the emotional up & downs and the ever-so-gradual recovery. I was so ready to "feel normal" that every bad day has just kinda sunk me. My husband has provided some valuable perspective in terms of progress I've made despite my feelings. Maybe someone in your life can help with that too. It is so hard to focus on the big picture when the day to day can be so rough but when I am able to do that I realize it will get better. I can go to my docs with my concerns and see if there are workable solutions or if I just need to be patient. Patience not my strong suit but working on it. I hope things get better for you and please know I'm rooting for you and so is everyone here.
Having kidney failure is an emotional rollercoaster. I had one kidney transplant that lasted 17 years and then found out I would need another. You mean I have to do that ALL AGAIN?? I was severely depressed for about 6 months after hearing that news. I had my second transplant almost 10 years ago. The first year after a transplant can be particularly challenging. All the doctor visits, all the new medication & changing medication. I switched medication about 4 months after my second transplant because the side effects were so bad. I went from tacro/cellcept to sirolimus/imuran.
Keep telling your doctors how you are feeling, ask them if there are any changes to meds they might be able to do to lessen some side effects.
I know it's difficult with the Covid pandemic, but see if there are any kidney/transplant groups in your area to connect with. Sharing with other people who have gone through something similar can be really helpful.
Thanks Tallyn for sharing your 'truth' in how you are doing and feeling. I am glad to have read the replies to your initial post. My spouse is 2 yr 8 mos post transplant and never had dialysis for his PKD, but we are still waiting for him to have a good day with energy and his entire body not have the tremors (tacrolimus side effect). Reading these responses to you I just continue to be supportive of my spouse of over 40 yrs (he is 62) and patient. His blood work is great after it taking 14 consecutive months to happen, but now we wait for physical improvements so he can resume hobbies he once had done and now does not have the ability due to fatigue and tremors and more . Are you on insulin for diabetes? I sincerely hope you do see your transplant team and be honest like you were with us and demand changes to help yourself have a fuller life. I do say you are doing so well with your health care with diet and exercise. Good for you. Keep us informed.
Hi Tallyn, I had a transplant almost 50 years ago and have grown my resilience over time. We find our "new normal" when we get a kidney gift, and we can have a life full of being in control of our health, optimism, gratitude, meaning, healthy relationships and joy. It's about learning how to ride the rollercoaster without falling off! Please let me know how you are doing?
I have bad days and great days. Life on dialysis is the Hell. Speak with your doctors about a light anti depressant . I take them and stay on keel. You’re a walking miracle stay the course . Don’t spend time alone . Social interaction will make you forgive the side effects. I’m pulling for you.
I haven't had a transplant yet but I've read 100's of these posts and fully expect the first 12 to 18 months to be rough. At this point with CKD I'm not even sure what a normal life is. I'm probably close to having to go on dialysis and am starting to have more "bad" days than "good". I'm tired of the food restrictions, tired of being tired, tired of the headaches. But for every one post with people having post transplant issues there are 10 who have had good experiences so I'm going with the probability mine will be good too. Thanks to the people on here I know to keep my transplant team informed of any issues I have before they become unmanageable.
Quality of life can be improved by modification of meds and lifestyle changes. However, death cannot. The 5-year mortality rate for patients starting dialysis is over 50% whereas in transplant patients it is less than 20%.
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