Living kidney donor recovery - Extreme lack of energy

[Beagle lover]

Hi my name is Nancy and I donated a kidney to my husband in June 2014. My doctors advised me that it would take 3 months to get my energy back. I work in a job with young children that requires a lot of energy. I was given 9 weeks off work, one week before my expected return I still was not in shape to return to work. The doctor gave me an additional 4 weeks to recover but told me there was no way I could be that exhausted physically 2 months post op that it was psychological. I have been back to work for many weeks now but still suffer from a complete lack of energy (5 months post op). Pre-op I was very active exercising doing spinning, treadmill and weights. I now find it hard to exercise most of the time and when I do it is not close to the intensity pre-op. The hospital has not been supportive or helpful. I would like to hear from other living kidney donors with regards to their experience and recovery time. When did you feel like your self post op? What did doctors tell you your recovery time would be? I have read online some donors say doctors told them 6 months. Thanks for reading and any information will be appreciated.

[Fr Pat]

     I did not experience that problem (I donated a kidney 12 years ago), but have read of other donors in your similar situation.
     The only suggestion that I can offer is to point out that in the surgery to remove the kidney there is sometimes a negative effect on the adrenal grand above that kidney. The flow of blood to and from that adrenal gland can be changed, reducing its ability to produce its hormones or to effectively release them into the blood stream. The adrenal gland itself can be accidentally damaged during the kidney surgery. Some donors with long-term fatigue problems have consulted an endocrinologist to evaluate adrenal function.
     I'm not a medical professional. I'm just passing along what I have read.
     You may want to post your question at the Facebook page of livingdonorsonline as there seem to be many donors who check in there who may not also use this site.
        best wishes,
             Fr. Pat

[Beagle lover]

Thank you.  I went on the Facebook site.  After posting my story I received responses immediately.  So many people have suffered the same thing months and in some cases years after donation.  Reading them was a great comfort to me and gives me hope that with time I will feel 100% again

[pilotjjc3]

It took me about 6 months or so to feel 100%.  Even then if I did not have the stamina for physical work for long periods of time.  Good luck.

[Orchidlady]

I felt much better at 5-6 weeks but still, as you, had an issue with stamina and grew tired after what seemed like little effort. I remember at one point thinking that I would never have my old energy level back from pre surgery. As others have commented, from about six to eight months, it was like a light switch went on - my energy was back and I did not get or feel as tired as I had. Thank goodness! Hope you feel better soon, and hope your husband is doing well.

[lostcosmonauts]

Hi there,

My experience has been very similar. I donated (left side) at the end of July and took 6 weeks off work.

After 3 months I sought help from GP and transplant coordinator as I was just not able to keep up a normal schedule. I has exhausted at work and free time was just knackered.

Still to get to the bottom of things - not anaemic, eGFR is 59, blood glucose is normal. Recommended couselling for fatigue and anxiety but I'm not yet convinced that low cortisol isn't a better explanation.

Hospital suggested that my idea of normal activity was maybe at the root of this - I am in a senior scientific management position and used to working intensive/long days and competed in triathlons/ultramarathons before donation. They suggested that what I consider chronically fatigued is probably ok and that it will just take longer to get back to my previous level.

I did take a lot of time prior to donation asking about impact on hormone levels especially EPO and the impact of protein breakdown during endurance events potentially damaging the remaining kidney. Hormone levels they said would be unaffected. Endurance events they said were probably ok but no-one was quite sure - recommended to leave off for 9 or so months and be careful about dehydration levels when I start back. Also recommended avoiding protein supplements.

[pvanhoudt]

Nancy,
I donated 5 years ago and am still feeling the effects.  I would estimate that between 20-30% of my stamina never returned.  I had a very regular exercise regiment for years prior to my donation and I've not been able to return to it since.  I struggled for years trying to figure it out.  The transplant doctors said I should be back to normal but I never got there.  Don't get me wrong, I don't regret my decision, I just wish I knew what to expect afterward.  My donation was anonymous, I don't know the recipient.  I now have prostate cancer and am REALLY struggling with fatigue.  I attribute my situation to the combination of both.  I'm not bitter.  The cancer is under control.  My "additional" fatigue is caused by the treatments.  I have a good job so no real disaster here.
Good luck,
Paul