Hello everyone - I had a transplant just shy of two months ago! I'm grateful I have good kidney function now. I'm disappointed, though, that I'm still really tired. I've been anemic for a long time and my labs are improving -- I'm getting close to the normal range. I don't feel any less tired now, though, than I did when my labs were worse. And some years ago, when I wasn't anemic, I still struggled with fatigue. I was really hoping this new kidney would make me feel energetic and vibrant again; but, alas, it's not
What have been your experiences with having a transplant and fatigue?
Thanks, in advance, for any thoughts you can toss my way!
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wonderingjen
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I was must more energetic on dialysis but I think the medication you have to take affects your energy level for some people and let alone the surgery. It did for me. But it could just be getting older. Had my transplant at 70 and 75 now.
Thanks very much, Eyak1971. I fear you could be right about the medications. I was kind of hoping it isn't that because then I would have hope of it getting better; but having to take these medications forever, doesn't bode well for the fatigue improving. Wishing you many years of health with your kidney.
Take care. Your medication regiment will change as time progresses and so may your fatigue. I take supplements especially for renal care and eye care. You may want to talk to a dietician at your renal center.
Congrats on your transplant! You are only 2 months out so I assume you are meeting with your transplant team regularly and letting them know your concerns about your energy level. There could be multiple factors contributing to how you feel so I hope you keep asking til you get satisfactory answers. Best of luck in your recovery.
Thanks, Oceansideup. Yes, I meet with them regularly. For awhile my hematocrit was still quite low so we hung our hat on that; but now that it has come close to normal and I'm still tired, I'll have to talk with them again. I appreciate your response.
It’s only 2 months since your transplant, your immune system is at its lowest and your body is adjusting to the new meds. Give it at least 6 months to recover and then you might feel the energy. Some of us do carry on the fatigue, and the meds have side effects . But hopefully with time you will feel much better.
I had the same experience and felt very fatigued and just not great despite being grateful for the kidney and no more dialysis. I suspected that some of the medication was the cause. As each preventative med was reduced then stopped I felt a little better. At 6 months I started to see a big difference.
What medications are you taking and is there a plan to reduce and stop any? My transplant center stops the tacrolimus and uses Belatacept monthly infusions along with daily mycophenelate and low dose prednisone. I feel good most days which is a miracle. Praying this will be your story in the near future.
Thank you! I'm so glad for you, Mydaughtermyhero, that you are feeling better! That gives me some hope. I, also, am on prednisone, mycophenolate, and tacrolimus. I'll ask about the Belatacept. And, yes, I'm on several medications (anti viral and anti bacterial) that I'll be stopping within the next several months. Does your center switch to Belatacept for everyone or just with you, and do you know why?
The antiviral and antibacterial both really disagreed with me. My doctor let me stop each of them a little bit early because my labs were good and stable. Yes, everyone at Emory University transplant does the Belatacept. The tacrolimus was tapered and labs monitored every 2 weeks. The Belatacept was started right after the transplant. I can completely relate to your experience right now. I was really concerned that I didn’t feel better sooner, especially with everyone asking me how I felt. It was so wonderful when I could finally say that I honestly feel good.
You’re not bothering me at all. I am happy to try to help and encourage you. I’m not completely sure about all the reasons for Belatacept. I know it’s less daily medication and more well tolerated. Long term is still to be seen.
Extremely tired. Not able to walk 10 min. Your body need to get familiar with immunosuppression. It will happen day by day. Be positive and in 12 month you'll be ready for maratone 😉
Just had my 6 year anniversary. Not certain how sick you were but life is dramatically better and normal. Congratulations on your transplant and wishing you many years of health and happiness with your new kidney.
Fatigue post transplant is common. I’ve been transplanted for 37 years over that period of time. A very important part of dealing with fatigue is exercise. Just a simple building up of your legs and your heart is a great I would make sure that you talk with your physician And ask for some guidance and developing an exercise program. It’s a blessing that you’re anemia is getting better better that that will provide you with the ability to get stronger cause you eat right and always think positive remember fatigue is it important warning sign that you need to rest you do that frequently along with the exercise program I think you’ll do really well and I hope that this helps you
You are still in early recovering stage. Feeling "off" is actually the norm. Be patient, with healthy diet and regular physical activity, you will feel strong and energetic very soon.
Actually, you are still in the Very early stages of healing. Remember you have had MAJOR surgery and it requires patience and healing. You will get to feel closer to your normal self at about 3 months. It is also true your medications can make you sleepy. If you are not taking vitamins...find out based on your labs which ones you need..Talk to your Doctors office. Oh! And Congratulations on your transplant!!! Take good care of yourself. You have been blessed with the gift of a new kidney. ITS AMAZING. I promise to hold you up in prayer 🙏 ❤️
Thanks so much, Pc3661! I really hope I feel better with time. I'll make sure I'm taking all the vitamins I need. I appreciate the prayers! I hope you have many years of health as well.
First of all congrats on the new kidney. I am coming up on 2 years and still feel so very blessed to have a living donor who was also a very close friend. She is now is even closer and part of the family.
I would make sure that you take a vitamin with some iron in it. I still take a multi vitamin with iron. Make sure you get rest. Sometimes I had a hard time sleeping and still don’t get as much as I would like. Make sure you talk to your primary care doctor and your transplant team.
Also I would have them check your thyroid level. Sometimes if you are hypothyroid you don’t have the energy that you may want. I had thyroid issues but had a great endocrinologist who helped me a lot.
One final thought is to simply go out and walk each day. Start with 15-20 min. And do that for a week. Then go up by 5 min. You kind of help to build your stamina back. (I use to coach cross country and track….if a runner went through some major health issue, they would need to start back slowly and gradually they got back into better shape.
Again congrats….be patient and positive. You can do it!
I am 33 years post transplanted. My doctor advised that I should take Multi vitamin (Centrum) at the beginning to help with hands tremor (due to immunosuppression drugs). I feel better while I was taking the vitamin. I have been anemic for the 33 years since the transplant (I am even anemic before I got transplant). I did some research and found out most kidney transplant patients will experience anemic, but depend on the hemoglobin level there won't be any treatment until the hemoglobin level fall under 11 (check your lab result) My hemoglobin level for the 1st time at the normal range when I start taking Vitamin B-Complex (Vitamin B12 is aid in the process of making Red Blood Cell). Vitamin B-Complex help with turning food into energy, and making RBC. PLEASE CHECK WTH YOUR DOCTOR before taking any vitamin. I was approved by my nephrologist to take Centrum and B-Complex.
Also, every now and then my Nephrologist order extra lab test such as:
Wow - 33 years, that's wonderful! Congratulations on a successful transplant! 33 years is a long time to be anemic. I'm so glad you are now no longer anemic with the B complex. Are you feeling more energy, then? Thank you for your response!
Good heavens 2 months only,you are in the beginning stages only.Transplant centers really need to start informing people that it is not a miracle surgery and the road to feeling good is a long one with side effects,anemia ,illness and such for anywhere from 6 months if lucky to 2 years if not like me.Three years and finally things have leveled out.I had to fight my transplant team to put me on eprox when my anemia wasn't resolving after 2 months.That helped immensely.I was on it for 2 months.
Thanks so much, Parkerbarker, I really appreciate your input. I'm glad things have leveled out for you but sorry it took so long. What is Eprox? When I looked online all I see is a medication that helps inflammatory disorders like rheumatoid arthritis. Sounds like its used for anemia too?
It is an injection you give yourself once a week in the thigh or adominal area sub q and it it to build up your blood.Sorry eprex injections not eprox. Google eprex injections.
congratulations on your new kidney. To be honest it took me 6 months to feel like myself again. I still napped everyday for probably the first three months. For me it took awhile for my body to get used to the meds. They were very strong in the beginning. Hang in there. I’m 1.5 years post transplant and am so fortunate to have returned to my normal life.
Congrats on your transplant! My husband is nearly 3 years post-transplant and he's also frustrated by fatigue. We've been told that it's likely his meds, but he's also in his 60's so there's that. He recently had an issue with his mycophenolate so they took him off of it. Didn't seem to make much difference in terms of the fatigue, but by the time the issue was resolved, he had lost significant weight and his energy level had been reduced. We also live in MN and right now we're breaking records for the # of days it's been in the single digits so the inclination is to hibernate like bears. : ) This forum is such a great place for information and I'm glad you found your way here.
Thanks for your input, Advocate4life! Congrats to your husband, too. I'm sorry, though, he struggles with fatigue as well. I was born in Minneapolis and still have family there so very much understand those temperatures! Wishing you and your husband the best!
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