Living Donors Online Message Board

Living Donation Discussion and News => Living Donation Forum => Topic started by: mdaniels on March 08, 2018, 09:11:17 PM

Title: Post Kidney Donation Concerns
Post by: mdaniels on March 08, 2018, 09:11:17 PM
I donated my kidney April 2016 - 23 months ago. I STILL am having a lot of issues with fatigue. I'm constantly tired on a daily basis. I sleep about 7-7.5 hours on work night and on weekends an hour or two more. I have been experiencing sporadic blood pressure spikes since last summer. My blood pressure was considered low before my surgery. My health is relatively good (as it has to be to even be a donor). I do have to take monthly B12 injections (have been on for 5 or more years) and am on a low dose of thyroid medication (levoxyl for hypothroid) which I've been on for 22 years). All my blood levels looks normal. I'm getting very frustrated with my constant fatigue. Anyone experience similar issues this far out and have suggestions??
Title: Re: Post Kidney Donation Concerns
Post by: Fr Pat on March 08, 2018, 09:29:31 PM
my own post-donation fatigue did not last that long, but I know that a number of kidney donors have a big long-term problem with it, perhaps because when the left kidney is taken the blood supply to/from the left adrenal gland is reduced. You might want to post also at the FaceBook page of Living Donors on Line as well, as most donors only check in there these days.
   Fr. Pat
Title: Re: Post Kidney Donation Concerns
Post by: sherri on March 09, 2018, 07:52:44 AM
do you have a good primary care doctor of nephrologist who can address this issue? I had a great nephrologist who I saw yearly to do a through blood panel. sadly, he left nephrology and became a hospitalist. it took me a few tries but I found a new very caring nephrologist who listens and is willing to look into any of my concerns. perhaps you can go back to the transplant center if that is feasible or try and find a doctor willing to take the time to investigate your issue.

There are many donors who describe this type of fatigue and it may need to be worked up to uncover the reason.

best of luck

Title: Re: Post Kidney Donation Concerns
Post by: elephant on March 09, 2018, 03:18:06 PM
Dear mdaniels,

You could have adrenal issues, in which case an endocrinologist should be able to help you. 

Is it possible you have a health issue unrelated to the surgery?  Shortly after I donated I was diagnosed with an immune system disorder (Ulcerative Colitis) and I had terrible issues with fatigue.  Did the stress of surgery trigger expression of the immune system disorder?  We'll never know.  Perhaps it would have happened anyway.

The good news for me is that about five years after I got sick the colitis went into complete remission, and for the moment I feel nearly as strong as I did at donation.  Well, except the seven years older... 

Just because we are in good health at donation doesn't make us immune to developing new health issues.  I suggest you begin with a very thorough checkup as well as a visit to an endocrinologist.   You need to advocate for your own medical care - be the squeaky wheel. 

love, elephant

Title: Re: Post Kidney Donation Concerns
Post by: BB on March 14, 2018, 08:33:24 AM
Dear mdaniels,
I have  more than 31 years of post-donation experience. I have encountered several types of physical problems, from problems relating to  silly reasons to a serious problem due to an elevated  value of serum creatinine. Yet I came back every time.
I had similar problems like you. Since your reports are normal, you need not worry about your health. Like me, it can be due to your mental anxiety regarding the health of your existing kidney. My advice for you is to
(i) sleep at least for 8 hours daily
(ii) try to maintain a BP close to 110/70
(iii) meditate for an hour, if possible
Nothing to worry. Have no fear.
Best regards,