I am 2 years post transplant. At the begining of the my transplant I was so happy and positive but as soon as I started taking the medications I started to feel bad day by day. I have not recovered since then. Everyday I think to myself should I take the meds or not. As soon as I take the meds I start to have stomach pain , I cant think properly, I cant see properly with my eyes, back pain and the list goes on. I ask myself what kind of a life am I living, I feel like I dont have a normal life. When I was on dialysis I did it have these kinds of problems, they are new things that has come with the meds I have to take. I asked my about the meds to my doctor but he will not reduce the dosage or change them. I started working 2 jobs but had to quit them both due to all these problems as a result of these medications. People told me that it gets better after 1 year but that has not been the case for me as I am still dealing with all these problems and see no change. I had friends who choose not to get a transplant and advised me also but I did not listen. Anyone with a transplant still going through a lot problems and not able work or have a normal life.
Negative transplant experience - Kidney Transplant
Negative transplant experience
If you dont mind me asking.. how how are you? Ive have 2 transplants and would NEVER turn down the opportunityto get off dialysis. Im 4 years post, and have no problems . If you quit taking your meds youll loose your transplant, and be back on dialysis. Its honestly the question do you want to live? And if your having all these problems your doctors have to help you, especially the transplant team.
If you do not feel that your doctor is listening to your concerns try another transplant doctor. However please do NOT stop taking your medication. You have received the most precious gift there is, and you should honor it by making the commitment to take care of it for your life. There are always ways to help minimize side effects of any medication. Try to solve problem instead of thinking of it as a "regret". You are truly the lucky one.
Hello my friend, you are from the minority in this forum because A lot of patients here have kidneys working fine and 20 years and more 
( just allegorizing) anyway,
Dont be saddened , It has been 2 years and you probably you still take a lot of medicines and high dosages. Dosages is related to your kidney function so doctor can want to see future results.
Yes medicines have a lot of side effects but I do not think immunosuppressant makes these side effects, because I remember the feeling changing in mind when I was high dosage on prednisolone and cortisone so I think what you feel is about this you should see your doctor and want to adjust the dosage
Side effects changeable from person to person, I have Backpain too! A little osteoporosis too at 24! But remember that if it is adjusted it will be ok on the other hand can be risky for your kidney , You should see a few doctors not one if you dont feel ok.
And I know you feel disappointed when you read comments written here because always they say ''you are the lucky one'' '' you have a gift'' etc. but you came here for a solution not for the encouragement
Dont forget! your problems can be solved by trying different dosages but it is related to kidney function. You should say again to your doctor
Have you considered finding a transplant Nephrologist. One that focuses one patients with transplants. Your transplant team should be able to get you into see one. Nothing is simple about transplants but you will lose your kidney if you stop or cut back on your transplant meds. Find a transplant Nephrologist and above all don’t give up. Not all Nephrologists are Transplant savvy.
Please please please get second opinion. There are options for meds and if your doctor will not help you find one that will. Your transplant center should be another resource. Don’t give up! Your donated organ is priceless.
I’m so sorry you’ve had such a bad experience with transplant.
I am in the process of deciding if transplant is for me or not and these are the kind of stories I’ve been wanting to hear about. So thank you so much for sharing!!
I feel like I am very healthy right now on dialysis. My labs always come back good unless I splurge at the fair or something really bad that I shouldn’t have ate. I can workout right now, my immune system fights off sickness well, & the only problem for me is dialysis and the psychological aspect of it all.. which I’m handling pretty well given the circumstances!
I don’t want to get a transplant and be more sick than I ever was. I’m only 25 and was diagnosed a year and a half ago.
What kind of Dialysis do you use ?
If you get offered a kidney, I’d sure take it. Best thing that ever happened for me.
Hi MTgirl! I saw your response and just had to respond. I was on hemodialysis when I was 23. I put off getting a transplant because I was afraid I'd die in surgery. So, I stayed on dialysis for 1 1/2 years before finally taking the plunge. I'm 46-years-old now, and if I knew then what I know now, I would've had the transplant as soon as my mom offered to give me her kidney! I know everybody is different, but my heart is messed up from dialysis and the extreme high blood pressure I had. Not a single doctor told me how hard dialysis was on the body, especially the heart. After a dialysis nurse told my husband that most dialysis patients die due to heart related issues, I immediately had my first transplant. I have since had another transplant, and while I do have a lot of chronic health issues I'm still alive, and I consider that a win! Wishing you all the best on your journey! XX
Sorry things seem so desperate for you right now that you are questioning the wisdom of having a kidney transplant. I dont want to preach to the choir but dialysis is not a cure for kidney failure but part of a short time treatment plan (at least my opinion). Even a transplant is not a cure but a treatment; we all have to deal with the kidney failure the rest of our lives! It is tough and we live a rough life at times but it is the hand we are dealt when diagnosed with a life threatening medical condition. My first advise in trying to smooth out those rough times would be to do what all the others have said. Let your medical team truly know how you feel and you need help. I know from taking things such as plaquenil or fosamax, I can do things when I take them to lessen the negative impact of the medicine. Yoga helps with the back and joint issues caused by predisone. This is just a small example. But different things work for different people and most Transplant Neurologist know the things that might help with you. But the last thing might be one of the most important things you can do for yourself. Find a therapist that works with folks with chronic health issues. You are not unusual that is why there are therapist that offer this service. You can start with your transplant team as that is how I found my first therapist. I started with my current one because I wanted to work on my insomnia that was affecting my overall health and well-being. At different times during the past 39 years this has been of help. On dialysis I likely would have died well before my daughter (born 6 months after my transplant) reached high school. Instead I watched both of my kids graduate from high school, get into college (finishing was a different story - LOL), walked my daughter down the aisle at her wedding and spent this summer with my ten-yr old grandson on the back of my Spyder-Trike. For this I will embrace the side-effects of a kidney transplant and do my best at keeping my head on straight. be well - be strong. Embrace life!
Hello Tahmed251, I am so sorry for you. So many people expect you to be the "old you", that person you were before all of this started. They DO NOT understand that the dialysis, transplant surgery and all the prescriptions have changed you forever. I felt better the first month after the surgery than I do now at 1 1/2 years. If someone asks me how I feel , I always lie and say I'm ok. People have the expectation that you'll be good as new in no time. This isn't a broken arm-take off the cast and you'll never know the difference. One time I told the truth and said that I felt awful and I was accused of "having a pity party". Now I always say ok. I wish I could say something helpful. How about: I know how you feel, it's awful and I will always understand if you want to come back here and "talk to me". You will not get criticism or pity party accusations. Although I can't offer you a magic solution, I will listen, I will pray for you, I will understand how hard this is. All the best! ynnep
Finally I found someone who understands what I am talking about. Transplant is not for everyone. Post transplant life with all these medications lowers your quality of life and makes you feel unwell and gives you poor quality of life. The only thing is that you dont have dialysis and so many new problems have come up that make you feel bad everyday.
We have all suffered side effects from medications. Believe me you are not the only person who wishes the medications are less "powerful". The plus side is that the side effects CAN and SHOULD improve under the right care and in time. It takes both courage and patience to overcome what you are feeling right now and I wish you the best!
I understand too. I was not on dialysis but I had more energy before my transplant than I do now. I got put on Prednisone when I was not supposed to be and my center says we'll you have to be on it now for life. This has caused me a lot of problems. I have sugar issues, my creatine and bun levels have went up, I have hypothyroidism, I have edma and low blood pressure. I do think you need to talk to any one at your center who will listen about how the meds are making you feel. Yell if you have to or start asking others at your center about how they feel or how their meds make them feel.
You do have a right to feel well! As Kbressler suggested you need to see a transplant nephrologist, if your transplant team does not seem to be helping you. It almost has to be your transplant meds. I had a lot of GI issues, etc at first, but when the dose of my meds were adjusted, things improved. What transplant meds do you take?
You need to be your own advocate and be active in solving your issues. Be persistent! Don't let it drop...you know your body better than anyone.
My nephrologist also worked with me and I take name brand Neoral and Myfortic. Even though generic is less expensive, doctor's said that generic is just a little bit different than name brand. To this day, I take name brand - for over 19 years now.
Please do not stop taking your immunosuppressants - you will lose your transplant.
Find a doctor that will work with you to find the right dose of your meds for you.
Hello Tahmed251, I plan on taking WYOAnne's advice and try to work with the Transplant Team. The problem there is that there are so many patients and any office visits are sooooo RUSHED that you feel like you're on an assembly line. I will be transitioning to my home Nephrologist soon and I'm really looking forward to working with a doctor that I know well.
But this is supposed to be about you. Please know that all of us here on HealthUnlocked are here for each other. Even if it's just to listen and be a friend to someone in need.
Please ask for a second opinion. My meds made me very ill at first. It took months to get the balance right but with great doctors and consultants and a few tweaks in meds, I'm feeling great now. (3 years post transplant) and would never want to go back on dialysis , given a choice.
Every time I go to the clinic, I see someone different and sometimes they try to change my meds back to the original ones but when I explain, they understand.
Another opinion might just work for you.
Best wishes,
Mgt
Your transplant is a second chance at life my friend; don’t give up and don’t stop taking your meds. Everyone here has given you great advice to follow so I won’t reiterate. I will say that God is great and He will get you through. I will pray for you to be patient, strong and grateful for your second chance.
Hello. I had a transplant earlier this month. So far for me, only issues ive had are trouble sleeping, hard to drink water. I use to drink plenty but after surgery, have no desire. Also, a few sharp pains in the stomach area. Im with you on the meds. Im literally take 28 pills a day between day and evening and have no idea what some of them are for. Maybe ask the doctor to give you a different brand of the medication
It's literally unpredictable to determine what's going to happen after a transplant. When I had mine in 1982 I felt great. Lots of energy (prednisone), good attitude. It wasn't long before I started to feel sick. Unbeknownst to me, the transplant incision split open in the recovery room and had to be redone. The incision started to drain pink liquid and I started running a fever. The pink turned into frothy green and flowed out of me like a faucet. I had staphylococcus infection. This went on for almost two months. In addition, a tunnel with four six inch drain holes was created to help drain the infection into a bag. It was gross, smelled like almonds and almost rejected the kidney. After several bags of antibiotics the staph stopped. Then, came the wound care. I had to peroxide the tunnel and four drain points on my abdomen three times a day and stuff the holes with betadine gauze so it would heal from the inside out. It never totally healed and I have four six inch holes and part of a tunnel that never healed. It took a year before I could stop post wound care. Throughout the years stuff has happened and I was in and out of the workplace. I couldn't work on hemo dialysis. Currently, I have had some bad labs, but would still do it again. Therapy has been very helpful and I encourage you to at least try it. The medication can be rough, so continue to voice your concerns to your doctor. Sometimes, it helps to make a list. Be sure to tell the doctor things have gotten so bad for you, that you are considering stopping your medication. Let us know how things turn out.
Hello Tahmed251, I am the wife/caregiver to my spouse who received his kidney transplant 21 months ago. The first 14 months were full of assorted blood chemistry problems, rejection of organ that was resolved after 5 days in hosp, and getting CMV from donor of organ. Finally in Jan this year, he had a good , the first , blood lab results and each month since Jan 2020 he has good blood work. He never was on dialysis and is 59 yrs old when he got transplant. He feels lousey all the time since coming home 21 months ago to now. The meds he takes, and he's diabetic too has changed his lifestyle drastically. We wonders if he should have declined the organ due to how he feels worse now than before the transplant with gfr at 13%. I feel the transplant team of doctors do their work well when it comes to the organ succeeding, but they do poorly with the mental anguish he goes through and me too. He had cancer at age 30 and knows what feeling lousey feels like. He is trying to accept that things probably will not improve. He still sees/talks to his transplant dr every 3 months and they keep tweaking meds due to CMV virus causes a drop in Cellcept med for months and now increasing that drug. I wish we knew before the transplant all the issues involved after transplant with meds. Everyone is different from reading this HealthUnlocked for over a year. We did our own indepth research on this transplant before he chose to try and get put on wait list. His brother also had a transplant from his wife as a donor and his organ was viable 17 yrs and then it stopped for other reasons in his health. To me as his wife of 43 yrs, this is a huge long journey with alot of unknowns due to everyone's body's are different in how they deal with a transplant in their body. I do feel you should seek another doctor who will listen to you and spend time with you and please don't stop taking the medications. I hope you can also talk to a professional counselor to help you. I truly wish you the best. I just keep saying "there are miracles" and I just keep waiting to see one happen for my husband so he can live a fuller life.
I feel worse post transplant but was never on dialysis.Side affects for me are hair loss, weight gain, ,tinnitus, thining skin, poor eye sight, chronic back pain and exhaustion.
At my last bloods I persuaded the nephrologist to
shave 2mg off my Tacro dose and feel things have improved a little.
I feel almost 2 years post transplant that it’s time to start to negotiate (if safe )the meds where I can.
This will sound weird but the set backs , all these new ailments don’t get me down , there are days of course , instead they feel like challenges to overcome.
And when I do I feel elevated and grateful.
So much is to do with ones approach. I don’t have to force these feelings , they come naturally ( at the moment) .
Mindfulness helps as does exercise diet and s amusing friends and the odd shot of frozen vodka .
Realised that my reply might not be that helpful as I appear to be relatively fine. I am in ways and I’m not… my best advice get help from trained counsellors , talk to your doctors and give things time. It can be overwhelming when your body feels unreliable …keep going . Cope with no more than the day ahead . Sending you support on your journey
Hello Tahmed, I'm sorry you're struggling. Everybody's journey through kidney failure, dialysis, and transplantation is different. For instance, I was shocked to read you feel your quality of life was better on dialysis than it is since your transplant. While I was grateful for dialysis because it kept me alive, I absolutely hated it with a passion! I felt sick all of the time, developed 2 blood infections that almost killed me, and used to cry because I could only have 1 cup of fluid a day. It was a living hell for me! With that being said, I understand your frustration with the numerous side effects of the anti-rejection medications. I'm on my second transplant (I had the first one for 6 1/2 years, and this second one for 14 1/2 years), and I've developed a lot of chronic health conditions as a result of the anti-rejection medications. I feel nauseous and have heartburn a lot. I developed type 2 diabetes a month after my first transplant. I have extremely high blood pressure, sleep apnea, high cholesterol, and a heart issue from the years of high blood pressure. Oh, and I had cataract surgery when I was 39! I wake up every day, take my pills, take my shots, and thank God for the life I've been given. No, it hasn't been easy, but when I was 20 and first found out I was in kidney failure, I promised myself that no matter what my body had to endure, I was going to do whatever was necessary to stay alive, and enjoy the life that I've been blessed with.
I'm not saying you don't have a right to your feelings, because you certainly do! What I am saying though is that there are a lot of things we have no control over. None of us would willingly choose this path in life, but here we are! Every day each of us gets to choose how we're going to live our lives. You can't control that you have chronic health issues, but you do control your attitude and your thoughts, and both of those things impact your emotions. When I feel like I've gotten the bad end of the deal in this life, I remind myself of all of the people who have died, and who will continue to die waiting for a transplant. I'm one of the lucky ones, and although it doesn't feel like it now, so are you!
I understand the frustration and disappointment that comes with not being able to hold down a job. Seventeen years ago I gave up SSI and free health insurance so that I could work full time. I've felt well enough to work 3 out of the last 17 years. I always wanted to be a career woman. I thought I was put here to be a therapist. Unfortunately, I've recently come to the realization that at 46-years-old, it makes no sense to go into more debt to get a degree when I can't hold down a full time job. It's been hard to accept that I'm never going to have some grand career. I do have limitations, but that doesn't mean I can't dream new dreams, and have different goals for myself. Maybe you can reassess things, let go of what might have been, and begin dreaming, planning, and living a life that is still meaningful and joyful to you.
I encourage you to find a nephrologist who will work with you in dealing with some of the more problematic side effects. Wake-up everyday and find at least 3 things to be thankful for. Lean on something bigger than yourself, whether that's faith based or a personal philosophy, etc. Be kind and patient with yourself, and if you find yourself feeling stuck in anger, bitterness, or hopelessness please talk with a social worker or therapist. I'm certain every single person on this board has at one time or another, experienced all the same emotions you're feeling. You're not alone, Tahmed! Sending a virtual hug your way, and praying you find peace, strength, and healing.
Your reply is heartfelt and sweet I appreciate your words. Tahmed wrote this post almost a year ago so I think he is probably doing a lot better now. How are you doing? Did you find a job that you enjoy?
Tahmed251 wrote about 1 month ago ''Kidney transplant does not look like what you expect it to be. I am 41 and on disability benefits after my transplant and cannot have a normal life. Transplant is not a cure it's only a treatment. It's time people know the truth about transplant. God bless those who are struggling with a transplant. ''
I hope he will be fine. Shanny1024 Thanks for your writing
Me too! <3
Hi Lisa! Sorry for the late reply. I just got back from a 2 week vacation. Hopefully Tahmed is doing much better. Honestly, I think attitude is so important in relation to physical health. Our minds and bodies are connected, and while I can't control that I live with a chronic health condition, I do my best to find the beauty and goodness in life--and there is so much! I'm still not working, and with COVID running rampant in my area, I'd rather not be interacting with a lot of people at this time. I wear the n95 masks when I'm out in a crowd, but I honestly feel as though I'm being slowly suffocated! I'm taking this time to figure out a new dream/purpose for my life. I think everybody has something to offer this world, and I just need to find what I'm meant to do. Hopefully God will send some divine inspiration my way!
Thank you for your kind words, and for being such a supportive, friendly, and informative source for everybody on this forum. You truly helped alleviate a lot of my fears about getting the COVID vaccine, and I'm really grateful to you for that. You're the best! :0)
You are super sweet and kind, thank you! I hope you had a lovely vacation!
Hello Tahmed251, how are you doing now since your initial post was long ago? My spouse 'still' has not improved since Jan 2020 when I wrote you . Our biggest issue is living with covid19 and we both live in a bubble. He has no protection from this virus and we prefer for me to not bring it inside our small house either. His 2 nephrologist say to us "keep doing what we are doing , living isolated" and research to find answers is slow and ongoing. They do not want my spouse to take Evushield and my spouse is up to date on all vaccines/boosters. Every since I brought him home in Dec 2018 from the hospital to now, we are living isolated. Nothing has changed for us and no idea when it will change. Six months ago my husband told me that the immunocompromised due to covid19 will be left behind and it has happened. WE see it. Please write how you are doing. I wish you well.
Get a different doctor. I had problems with an immuno suppressant after my transplant. My doctor changed me to betacept infusion and I have not had any further problems. Your doctor is not doing their job. You shouldn’t have to suffer. I am living a new normal life and I am forever grateful for receiving the gift of life.
Glad you are doing so well. My spouse meds were changed alot the first 14 mos after transplant due to rejection, low red blood cell count, CMV virus, and a few other issues. THe side effects of the medications and on 2 different insulins all play a huge role in how he feels everyday. the 8 mos of low red blood cell count and i have to inject him 3 times a week for a specific medication he told me recently , he never recovered from feeling no energy. He has 2 nephrologists in two different cities and states. Not everyone has a great experience with organ transplant mainly due to side effects of meds. he had 34 yrs ago hodgkins lymphoma cancer and 9 mos of chemo and he said that was a picnic compared to his experiences with transplant. I sincerely wish you all the best.
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