Still extremely tired 4 years after kidney donation

[redutch]

Hi,

First of all, sorry for my bad English, as I'm Dutch;)

I'm 29 years old and donated my left kidney to my brother almost 4 years ago. Since then, I'm not doing very well. I'm suffering from extreme fatigue, I can sleep for 12 hours a day if I want to without a problem and (ofcourse) still feel tired. I've been seeing my doctor several times now. They said it was a mental issue, I was told to see a psychiatrist which didn't help me a lot. Everything I do costs so much energy, I have trouble concentrating, never feel rested, it's having a really big impact on my life. Ofcourse they've tested my blood several times, these results are always ok. I don't know if they tested me on everything, but I do think so.

I don't know what to do anymore. Are there more people with this problem?

[Michael]

Maybe your adrenal gland was damaged during the nephrectomy. Symptoms of adrenal insufficiency include muscle weakness and fatigue:
https://www.webmd.com/cancer/what-is-adrenal-insufficiency#1

There has been some research on the effect of living donation of the left kidney on the adrenal gland:
https://clinicaltrials.gov/ct2/show/NCT00251836
https://atcmeetingabstracts.com/abstract/left-sided-donor-nephrectomy-predisposes-living-kidney-donors-to-latent-adrenal-insufficiency-with-symptoms-of-fatigue-and-inferior-quality-of-life/

[Fr Pat]

Yes, definitely ask your doctor to test for adrenal gland activity. Since the adrenal gland is usually not removed when you donate a kidney, some doctors don't think to check on adrenal problems. Not all doctors realize that when you donate the left kidney the blood supply to and from the left adrenal gland can be reduced or stopped, so that although the adrenal gland is not damaged it cannot function well. If the remaining adrenal gland on the other side does not make up for that, fatigue can be one result.

[redutch]

Hi,

Thank you both for the replies! I have read about it in the past, is it something that can be diagnosed? Is it a "real" thing? Because I've read about adrenal fatigue and that not all doctors recognise it as a real issue.

[Michael]

A quick check of some Internet sites indicates there's a difference between "adrenal fatigue" and "adrenal insufficiency." The symptoms you described sound more like "adrenal insufficiency," which is a thing and can be tested.

https://www.hormone.org/diseases-and-conditions/adrenal/adrenal-fatigue
https://www.hormone.org/diseases-and-conditions/adrenal/adrenal-insufficiency

[sherri]

Vitamin D deficiency may also contribute to fatigue. The kidneys do a lot more than just clear waste. not sure how it is in Holland but here in the States there are no organized long term data bases to follow donors more than 2 years. there are retrospective studies (meaning they look back at available data) but that often is left with gaps. perhaps try a different doctor who is more willing to look into your symptoms. If possible maybe a good nephrologist or endocrinologist who is willing to take the time and listen. not sure what type of health system you have where you are.

so sorry to hear of your complications. There is a facebook group living donors with complications and many on that site have reported fatigue as a side effect from having one kidney.

best of luck to you and hope you get some answers.

Sherri

[Fr Pat]

Yes, I have read that we kidney donors tend toward deficiency in both Vitamin D and Vitamin B-12, even with good nutrition and sunshine. I take a small daily supplement of both. Probably would be worth trying.

[redutch]

Ok, I've been to the doctor again, now everything in my blood is being checked. I've also contacted the nephrologist in the hospital, perhaps he knows what to do or what to look for. Fingers crossed they find something...

[Michael]

I'm hoping you get an answer!

[redutch]

Alright, I've got the results of the doctor which didn't show any bad signs. I've asked for the vitamine d value, and it was 54 nmol/l. They said that this value is good and can't be the cause of fatigue. I've also contacted the kidney donation department at the hospital where the surgery took place. They said they couldn't do anything for me unless I show signs of kidney failure and say it is probably a mental issue. Very helpful....

I think I'm going to look for a second opinion at another doctor, perhaps they look at it differently and have some ideas of what to do next.

[Fr Pat]

One of the links Michael kindly posted above is to a medical study: "Left-sided Donor Nephrectomy Predisposes Living Kindey Donors to Latent Adrenal...", which can also be found by scrolling down to it at the "Living Donation in the News" section of this site. Perhaps it would be well to print out copies to give to your doctors? "Fatigue is hard to measure, since it does not produce a lab number. In the study they used a standardized set of questions that distinguish levels of fatigue. Their conclusion is that post-donation fatigue is NOT a mental problem, but a physical one. Some doctors dismiss complaints of fatigue simply because it is so hard to measure it.

[redutch]

One of the links Michael kindly posted above is to a medical study: "Left-sided Donor Nephrectomy Predisposes Living Kindey Donors to Latent Adrenal...", which can also be found by scrolling down to it at the "Living Donation in the News" section of this site. Perhaps it would be well to print out copies to give to your doctors? "Fatigue is hard to measure, since it does not produce a lab number. In the study they used a standardized set of questions that distinguish levels of fatigue. Their conclusion is that post-donation fatigue is NOT a mental problem, but a physical one. Some doctors dismiss complaints of fatigue simply because it is so hard to measure it.

Thanks for your reply and the tip. I will definitely do that, I'm also going to see a different doctor for a second opinion, perhaps he/she can look at it from a different angle, other than "it's just a mental issue".