I have read that it will take longer for us (people with kidney transplants and on immunosuppressants) to recover after exercise. Do you find this to be true for you? What does that feel like? How do you structure your exercise to account for the need for recovery time (if you do)?
I feel great while exercising but often the next day feel run down. I always wonder if I need to rest or push through. I am not sure if it is just the regular process of getting in shape or if my body is saying to take it easy. Hard to say also what is from meds, middle age, perimenopause, kidneys, or just normal day to day human fluctuations.
I am going to ask at my next appt about a dietician and/or physical therapist for advice. Just curious if anyone has wisdom to share from your own experience.
Thanks!
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TeacherMommy
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Hi TeacherMommy, I am in the exact situation and also wonder which option you already mentioned might be causing what symptom. It doesn't seem as if anyone has the answers in the kidney world...I've asked. I know that I probably should have gone to a physio right after transplant but I was in so much pain, and then just so fed up with it all that I couldn't be bothered. It has been a year since my transplant. I'd been to a dietitian and found that to be quite helpful (but I do like my cakes) and I think the next step is physio. I am quite an active person but feel I need specific direction ....I'm sure there are proper exercises targeting the regions weakened by surgery. Clearly I am no role model lol, but I would definitely pursue physio and a dietitian if I were you. And I'll try too
Thanks for your reply and advice. Exactly what you said - I am an active person but I feel I need some transplant specific guidance. We’ll get there!! 😊
Does your center offer a physio reference? I know mine has dieticians, but not sure beyond that. Transplant centers need counselors and physical therapists IMHO.
Yes I use a rowing machine also as I haven't been able to manage actual rowing yet....too painful. Nobody at my center has really emphasized physio. It was just sort of mentioned in passing at 6 months when I told them my hip was still in a lot of pain. I also get a slipped disk (probably nothing to do with the transplant) so it looks as if I will end up going anyway for that...might as well as for help with the rest as well. Would like to lose the 10lbs I put on since the OP, plus another 5.
In my experience taking your time to build up your exercise regime gradually & listening to your body is key. We’re all different ages, sizes, in varying stages of health pre transplant, on different medications etc. Fuelling & hydrating properly before and after exercise is something that I’ve found very important. Rest & recovery also important if you’re pushing yourself and or playing competitive sport.
The World Transplant Games Federation also has guidance on post transplant exercise and sport which may help:
There are transplant patients taking part in casual, competitive and intensive sport all over the world so it is possible to get back to a level of “normality” given planning & time.
I’m 61, almost 5 years post transplant I’ve just had 2 major ops one in Feb one 6 weeks ago and one a month or so ahead ( for which I’m getting fit for) what I now know is is never stop exercising ( and that means well into old age) it’s the way through it all.
In many ways I’ve never been so healthy because exercise is now a non negotiable part of my life. I wish I’d done it sooner .
I’m lucky, my son is a physio so he’s always about to advise buy his main advice is that those who exercise heal faster , the body and the mind love movement.
walk dance skip jog lift weights yoga Thai chi walk the dog just keep moving our bodies are miraculous.
I don't have a transplant, my husband has one. We both exercise. But I'm having a harder time with that than my hubby right now (osteoporosis). I read your post, promptly went out on a walk, and will continue to keep my body going. Deeply appreciate your advice.
I take cyclosporine not tacrolimius and will be anemic for the rest of my life. I take it this is not the case for you, anemia?
I attend transplant support group via zoom for my transplant center and one other. There are people two or three years out. ALL of them complain of this kind of fatigue, simply aren’t capable of as much as they used to.
So, yes, get checked out. But remember we are all taking very serious drugs. We only have one working kidney. Our bodies have been through a lot.
How far out from your transplant are you? Make sure you get the AOK from your transplant team to exercise and what routine is OK. I was 13 years out and started getting pain over my transplant. MRI showed that I had an incisional hernia. I actually had to have it repaired twice and can no longer do any exercise that puts pressure on my abdominal muscles. You don't want this to happen to you...believe me. Not fun!
Thanks for the advice. Sorry you have gone through that! I am 2 years out and don’t have any exercise restrictions from my transplant team. I want to do what I can to be fit and strong to protect the kidney and to feel good, but I am also trying to listen to my body and not overdo it.
I can only speak for my 74 year old hubby with a transplant. I'm a year younger. He handles exercise much better than me. He's methodical, regular, and paced. I now have arthritic flares and it's hard, sometimes painful, and fatiguing for me. I never thought this would be the case. I wonder if the reason for one's kidney collapse may play a part. For example, I suspect autoimmune conditions would be very fatiguing in itself. Thankfully, my husband doesn't have that situation. Other things like simple age matters affect the body too. For example, the normal decline for lungs begins in the mid 30s. Thankfully, my hubby's incision doesn't bother him - no pain, no hernias, etc. He was told post surgery that kidney transplants usually don't disturb the muscles in that area very much and, as such, he wouldn't be on pain killers for very long. That turned out to be true. PositivelyJo has excellent advice. It's best to stay active to have a quality life. Some consider "physical inactivity" a disease in itself - complicating and shortening life. So both my hubby and myself push ourselves to include exercise daily. If one has access to professional advice tailored for you...reach out. It will benefit you.
Well, with 10-11 months of CMV during the first 14 months post transplant I was just seeing some real progress with regaining my strength and getting a daily mild to moderate exercise routine in place when the CMV resurfaced.. (Was able to start working on this late last December when the CMV stopped flaring. To say I was very weak would be quite the understatement.)
Now I’m in round 2 of CMV. So far I haven’t been as sick with it, thankfully. I’ve committed myself to doing 3 miles “walking” on my NuStep daily. So far so good. I really don’t want to lose the progress I’ve made since last December. I’m also doing strength training using resistance bands and walking a half mile daily.
Darlenia, I, too, have osteoporosis and arthritis. In fact both are so severe I now wear a brace on my right ankle. While in PT post transplant the therapists had me using a NuStep daily. It isn’t the same as walking but does simulate walking. It’s something I can do without overly straining my arthritic joints. I purchased a NuStep last March. That has made a huge difference for me. I can very easily fit this into a daily routine with the NuStep in my house. I am using in-home PT. She has created an exercise routine for me on the NuStep as well as strength training exercises using stretch bands and very light weights. All of this is helping. I do walk daily outside but not as far as I used to due to my ankle situation. I’m hoping to get back up to walking a mile straight outside. Right now it’s only half a mile once daily… But it’s much, much better than last December. This recovery has been brutal with the 10-11 month CMV bout last year.
I’ve got a poster of Ruth Bader Ginsburg lifting weights as she recovered from cancer on my wall by my NuStep!!! Her numerous recoveries from recurring cancer were such an inspiration.
Absolutely love that pic! Gosh, sometimes I get so depressed... aching hips, knees, feet. You and PositivelyJo and others are so inspirational. I'd be so lost if I couldn't get around and was forced to sit all day. If you can do it, I will too! Thank you, m'friend!
Do you have access to arthritis water exercise classes in your area? That’s something I plan to start when I have enough strength back. They would be even better for my joints.
Yes! I've been thinking about doing that - there's a nice pool about 30 minutes from me. That should definitely help! Thanks for refocusing my attention on that.
Have you tried collagen supplements Darlenia? I know a few people that use marine collagen capsules and it does help with joint pain. Just a suggestion 😊
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Anyone else have double nephrectomy w Kidney transplant?
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Any suggestion??
