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Author Topic: Long Term Fatigue  (Read 11024 times)

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Offline W303

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Long Term Fatigue
« on: December 06, 2013, 08:26:57 PM »
Hello everyone,

I am new to this forum. I have been looking around at some of the posts, but was having some trouble finding specific answers to my questions. So, I figured I should introduce myself and get some direct feedback from others. I've seen a lot of posts about fatigue right after donation, but fewer about long term problems. I'm wondering if others have experienced long-term fatigue.

I donated my kidney to a friend a few years ago. Everything has gone well, and the recipient and I are both in good health (save what I am about to relate.)

I have been experiencing periodic bouts of extreme fatigue. I am in my mid 40s and fairly active. The fatigue is not consistent. By that, I mean that it comes and goes, week to week, month to month, but when it comes on it is fairly debilitating. I end up sleeping for a long time. Last week, for example, after a long drive for Thanksgiving, I went to bed early, slept soundly for over 8 hours, was up for maybe two hours and fell back asleep for over an hour. I napped on and off most of that day and still was extremely tired. A couple of days later I was feeling better, but this week I am tired again.

I play soccer once a week. While I typically feel fine while I am playing, and stay well hydrated, a few hours after playing, I find that I can not keep my eyes open and I am pretty much worthless the remainder of the day.

My blood work shows that everything is functioning fine, and while I have been to the doctor repeatedly about this, they find nothing wrong with me. So, I am interested in your collective experience on this.

I look forward to being part of this community.

Offline Fr Pat

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Re: Long Term Fatigue
« Reply #1 on: December 07, 2013, 07:05:22 AM »
Dear "W303",
     Hi. I donated a kidney12 years ago, at age 56, and my fatigue problems were just in the months after donation. I sometimes have fatigue problems now, but at age 68 I don't know what to attribute to age or what might be related to the long-ago kidney donation.
I still run 10k 3 times a week and do occasional half-marathons. From what I have read from others over the years I can pass along two thoughts. Hopefully others here can add their own.
--- You mentioned an incident of continued fatigue even after a full night's sleep. I have read several reports by scientists who say that most Americans are "sleep deprived", regularly not getting quite enough sleep. I did need an earlier bed-time and naps after donation. You might ask yourself how many hours of sleep you usually got each night before the donation. Perhaps you were already among the "majority" of Americans who were "sleep deprived" without knowing it? How many hours do you normally get each night now? If you have returned to your pre-donation habits, and now after donation actually need even more sleep, maybe you are even more sleep-deprived now? I have the read that the effects are cumulative, and are not fixed by just one long sleep. Perhaps a harmless experiment might be to give yourself an extra hour of sleep each night for a week or two and see if it makes a difference. If it doesn't help, well, no harm done. Cheaper than a doctor's visit anyway.
--- People here have pointed out that while the adrenal gland above the donated kidney is usually not removed, the reattachment of the blood vessels can result in the healthy adrenal gland not being able to drain its hormones into the bloodstream as well as it used to. And sometimes the adrenal gland may be accidentally damaged during the donation surgery. Some donors with problems have consulted an endocrinologist to see if the adrenal gland on the other side has picked up the slack or not. Some doctors less familiar with kidney donation may tend to not even suspect adrenal gland problems since the gland was not removed. It appears that the problem of drainage of the hormones into the bloodstream, or problems of blood supply to the adrenal gland on the donation side, may not be widely known among doctors who don't specialize in this. I'm not a medical professional, so I may not have gotten all this straight, but if your problem persists you might ask if your adrenal gland function should be checked.

     Well, hope this may be helpful. Do please let us know how things go.
         best wishes,
    Fr. Pat

Offline kdub

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Re: Long Term Fatigue
« Reply #2 on: December 07, 2013, 08:36:54 AM »
Hi W303,

I've had a similar experience.  I find I am especially fatigued when I'm not hydrated.  Also, have your PHT levels been tested?  Low levels of PHT have been documented in kidney donors, and one side effect of hypoparathyroidism is fatigue.  Just an idea.  Good luck!

_kdub

Offline W303

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Re: Long Term Fatigue
« Reply #3 on: December 07, 2013, 09:36:30 AM »
Thanks for the replies.

My sleeping has been fairly consistent, before and after donation. And actually, now that I stop to think about it, I think I get a bit more sleep each night now than I did before donating. I average about  8 hours a night.

I'll talk to my doctor more specifically about possible adrenal issues.

As for my PHT levels, I have not had the PHT levels checked. My thyroid levels have been fairly consistent as have my calcium levels, but I will look into this more closely as well.

Thanks

Offline arballen

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Re: Long Term Fatigue
« Reply #4 on: December 07, 2013, 01:41:29 PM »
I second Fr. Pat on checking out your adrenal levels! I was going to suggest getting your TSH (thyroid function) checked too, but it appears that it is in working order. I started taking two supplements a few months ago for adrenal fatigue, along with my hypothyroidism, and it has done wonders for me.

Offline Fr Pat

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Re: Long Term Fatigue
« Reply #5 on: December 08, 2013, 01:01:32 AM »
Dear "W303",
     I forgot to mention that it has been reported on this forum that some doctors recommend that kidney donors take supplements of vitamins B-12 and vitamin D, as there is some indication that for some reason we donors may become deficient in these. Some donors have reported health improvements after stating to take these pills.
   Fr. Pat

Offline kdub

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Re: Long Term Fatigue
« Reply #6 on: December 08, 2013, 01:16:27 PM »
Need to edit my post to say that some donors have had issues with HIGH levels of PTH.

My nephrologist has me on vitamin D supplements, but I am pretty careful to not take any supplements that have not been prescribed by my doctor.  I personally have no idea what could become toxic to my one kidney.

kdub

Offline arballen

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Re: Long Term Fatigue
« Reply #7 on: December 09, 2013, 02:28:34 PM »
You might want to consider acupuncture! That may help your kidney functioning back on proper levels!

Offline elephant

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Re: Long Term Fatigue
« Reply #8 on: December 10, 2013, 07:58:35 AM »
Dear W,

I also suffer from fatigue post-donation. I donated at age 47.

It turned out I have an immune system disorder (ulcerative colitis) not discovered during the testing process.  It's impossible to say if surgery triggered emergence of this problem, or if I would have experienced it anyway. 

I do supplement with vitamins B12 and D.  Without the supplements I was low for vitamin D.  This deficiency may be due to either/both the kidney donation or the colitis.  In my case, the supplements did not significantly reduce fatigue. Other than the low vit D my blood work always looks great and does not explain my fatigue. 

So you could have an unrelated health issue.  Don't give up trying to figure out what is wrong. How about trying for nine hours of sleep a night - still within the normal range.

Love, elephant

Offline W303

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Re: Long Term Fatigue
« Reply #9 on: December 11, 2013, 11:52:12 AM »
All excellent suggestions. Thank you.

Elephant, it is very possible that it is entirely unrelated to the kidney donation, but I am exploring all angles, as neither my primary physician, nor a naturopath I have seen, have been much help. I did add in a B complex supplement for most of last year, with mixed results. It appears that I have some form of IBS, not unlike your ulcerative colitis, which I didn't pay much mind prior to donation. It was never bad enough to warrant much attention, aside from an occasional anemia. Post donation, however, what was occasional tiredness has become occasional fatigue. Lots of variables.

I will look into all of these and report back as I find some answers.

Offline rosscm

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Re: Long Term Fatigue
« Reply #10 on: May 18, 2016, 10:52:53 PM »
I may start a new thread too; however, wanted to ask here if you have been tested for CMV, cytomegalovirus? I donated in 2012, and have suffered with fatigue, malaise, ache etc. since then. I tested positive for cmv and will begin treatment with an infectious disease Dr. Next week. Good luck to you.

Offline sherri

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Re: Long Term Fatigue
« Reply #11 on: May 19, 2016, 07:54:46 AM »
RossCM,

Most of the population (50-80%) test positive for CMV. It is a dormant virus that usually does not cause any problems unless the patient is an infant (under developed immune system) or immuno-compromised. So our recipients often need to be treated due to the immuno- suppressants they take to prevent rejection. CMV is tested on all donors prior to transplant because the doctors sometimes need to adjust medications in the recipient if they do not have antibodies to this virus. you can get your records to see if you were CMV negative at the time of donation and then became positive now.

It is interesting that the infectious disease doctor is going to treat you, I assume with antiviral medications. Would want to make sure these drugs are adjusted if your creatinine has been affected from the donation. would be interested to hear the update. thanks for sharing. I always wondered about this dormant virus.

Sherri

https://www.nlm.nih.gov/medlineplus/cytomegalovirusinfections.html
Sherri
Living Kidney Donor 11/12/07

Offline dtwbcs

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Re: Long Term Fatigue
« Reply #12 on: July 16, 2016, 12:09:35 AM »
 Donated 4 Feb2014 for my Brother. I also have crippling fatigue, that they claim is my thyroid acting up , but shows normal with meds.I used to be extremely active before donating. Now I am doing good to work&go home and nap 1-3hrs every night. Totally drained. My creatinine is 1.45& egfr is 55.Going back to the clinic for an assessment. Maybe I will ask about the adrenal glands
« Last Edit: July 16, 2016, 12:13:44 AM by dtwbcs »

Offline CK

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Re: Long Term Fatigue
« Reply #13 on: July 16, 2016, 09:59:52 AM »
I'm not sure if you are male or female, but if you are female, perimenopause can be a culprit as well.

I think people tend to attribute any post-donation health issues to the donation, when it could be aging or other medical disorders, including emotional/psychological ones.  And every two-kidneyed woman I know has been told to take Vitamin D, it's the new thing doctors are recommending.

As far as I know, there hasn't been any significant link between donation and fatigue, though it seems to come up a lot on these forums, and it would be great to see more research on the issue.

Offline poodles

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Re: Long Term Fatigue
« Reply #14 on: September 20, 2016, 11:54:32 AM »
Hi W3OW, sorry you are having fatigue issues.

I also have the same issue and am very frustrated at the lack of follow up and feed back on the lives of living donors.

All I can tell you is keep working away at any ideas you may have and make sure you get the rest you need.

You will have to take this into your own hands and diligently follow any leads that present themselves.

Donors are in an odd situation as there are few records of donors in general and the actual surgery can be vary from surgeon to surgeon, from clinic to clinic , from country and from Provence to Provence depending on what the surgeon finds once you are opened up. Also there seems to be one standard way of recording surgical notes as current standard procedures in that hospital/Provence/country are not necessarily in the report. I conclude there is no recorded normal for all donors.

A now retired surgeon in the family told me it can be unbelievable what they have do to people when they are out cold on the operating table, he was specifically referring to spine and rib bones being out of place after a multi-hour procedure such as a kidney harvest. The objective is of the utmost importance not the gentle treatment of a body which may never know the difference.

It is five years since I donated to my husband and I can only tell you my health has steadily improved since the surgery but at a considerably slower pace than we understood would be the case.

All my blood work and other tests have been in the normal range since the surgery but life is more than a series of normal results. How do you test results compare to those you had in the donor work-up to discover if you were actually a suitable candidate? Go by your own data not the averages used to decide if a potential donor is healthy enough to live without an organ and then work to improve as best you can.

Do not get discouraged by donors who tell you they are considerably healthier after their donation. You have no way of knowing anything including how healthy they would have been if they had always taken care of their health as they now do.
I would also look beyond a diagnosis of fatigue. If you did not have fatigue before your donation then don't settle for that as a diagnosis.

It's worth trying any idea that comes up as you ever know what will work for you. Frequently there are no magic bullets in medicine or health, its a chipping away at all the little irritants that can add up.

After a lot of thought I decided to reply to this thread, It concerns me a lot that there are so many views, 2,470 Views  at time of writing, but relatively few posters, 13 Replies as I write this. This has to be a major concern for a lot of people.

Good luck!
 
« Last Edit: September 20, 2016, 11:58:41 AM by poodles »

 

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