Living Donors Online Message Board
Living Donation Discussion and News => Living Donation Forum => Topic started by: Rob_h on June 24, 2011, 01:22:52 PM
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Hi everyone,
I donated in 05 and began being unusually tired in 06. It got worse with lots of other things happening that seemed far removed from the donation. But now I have had two tests for cortisol that are at the very low end and next week will test the adrenal response. If the adreanal(s) do not respond then its treatable which is great. This doctor says it would not correct everything but it might help. It does raise an old question that I had discarded; could the onset timing been related to the donation; could the donation damaged one adreanal? Regardless of cause, I am excited about the chance for an improvement. Rob Halverson
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Dear Rob,
Nice to hear from you again (but sorry it is realted to health problems).
As you well know, I'm not a medical professional. But from what I have read, the problem for some kidney donors is that although the adrenal gland on that side may have been untouched, the blood vessel(s) by which its hormones reach the blood stream may have been compromised. So, it might be functioning fine, but unable to get its hormones delivered.
Another possibility is that the edrenal gland on that side may have been sccidentally damaged during the donation surgery.
It seems that in some cases the adrenal gland on that side is removed, although this does not seem to be common.
So it sounds like a good idea to check out the possibility of problems with the adrenal gland on that side, in my opinion.
Please let us know what developes.
best wishes,
Fr. Pat
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Dear Rob,
Sorry you're still searching for definitive answers to your health quandaries. This is a definite possibility, and your PCP should be able to get an answer from your transplant center as well as having independent means of testing that adrenal gland's function. Best wishes.
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Hi Clark, Well, I find out this week so it should be interesting. Not really sure if there is a way to get at the issue of how it came to be, but I will be mostly interesting in the treatment pros and cons and maybe later will get at the question of why. But more to the point of people here, its worth considering this as a possible side effect of donation; and if it is, let me say its quite unpleasant. I have been sick every day for the past year, more or less disabled from work as a CPA (I still have a funky practice), and have seen more medical offices than I can count. But this may be a turning point and the odds are its not something from the donation, just some bad luck medical thing that was going to happen anyway. best wishes, Rob Halverson
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Rob,
Can you refresh our memory. Which kidney did you donate? If was the left, they tie off the left adrenal vein which causes blood to backup in the gland and clot there. This then infarcts or kills off the gland. The longstanding belief is that the adrenal gland has more than one vein to drain it. Because of the laparoscopic procedure urologists have been able to document that this was not a correct assumption. Is estimated more like 90% of us have a lone adrenal vein on the left. They need to cut off this vein since drains into the renal vein on that side not directly into the inferior vena cava as does on the right.
Moving forward, transplant donor surgeons should have to document in the operative report whether or not the donor has a lone vein or not. If only one, this means for sure this donor should be followed for adrenal dysfunction. There are blood tests which can be done. If the adrenal hormone tests are abnormal once get to six months, this means that gland is lost. Keep in mind there is not test to determine of the other gland is OK. Swiss surgeons also think that once tie off the left gland, the increased blood pressure/flow to the contralateral gland stuns it and can cause issues with its health.
Regardless which kidney was taken, keep in mind the adrenal sits on top of the kidney so yes, it can be injured surgically as can any other organ or tissue near the kidney. This then would be an operator error. In years past, a radical nephrectomy was done in the setting of kidney cancer thinking that since the adrenal was so close that it too, might have cancer. The literature notes that depending on the size of the tumor this is not necessary. So they spare the adrenal if possible. Then--the urologist out of concern for long term health risks especially for cardiovascular disease have come to the point that they do renal sparing surgery. They take the tumor only if small and spare the kidney. Less renal mass means more risk long term. Time for transplant surgeons to stop the misinformation about our risks and include all this information as part of donor consent. Time for a standard consent and focus on aftercare.
Keep uas posted. Hope you feel better soon.
Donna
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Hi Donna,
Thanks for the information. I wish I had known this a long time ago. Anyway, I had the "gold standard" test today for finding out if the adreanal's are working. The doctor injects something that is supposed to create an adreanal response. In me all that happened is I got really sick. Then they take blood ever 30 mins. and I get the lab results Tues. I am hopeful this is a clue and can lead to a treatment as I have been sick for a really long time. In the good news dept. I got married to a wonderful woman with spring and we were able to to go on a honeymoon to England. Thanks for all you do to remind folks that donation is not without risks and unresolved issues. best wishes, Rob Halverson
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Good to see your name, Rob, but sorry to hear you are still having issues. Let us know what you find out from the test and what they do. It sounds like you have a bright spot with your wonderful wife! Congratulations!
Thanks to Donna for the information. No one ever said anything about this, and it gives us a heads up of what to look for.
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Donna to answer your question, yes it was the left kidney that was donated. If it is somehow a known problem related to the donation I am annoyed that I wasn't warned and then when I brought it up with the transplant team three years ago it wasn't considered. It just seem preventable. When you have symptoms like "I'm tired all the time", doctors and folks in general just marginalize you. You would think that someone who never had a history of illness until age 55 and has been a kidney donor would not get the "bum's rush" but you do! And adrenal failure, if thats what it is, does cause one to be tired. But besides being annoyed I am hopeful that this might be a turning point and in a way I did learn a lot being sick all this time that one cannot learn any other way. Best wishes, Rob Halverson
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Rob,
Congrats on your marriage. Happy for you both.
Now back to the adrenal issue. Recently I read my left sided kidney donation operative report from August 26, 1994. Prompted by donors who developed adrenal dysfunction plus was intrigued when first read the Swiss study on this issue (nothing published though). Clearly states in my operative report that they ligated (tied off) my left adrenal vein. If blood comes into the adrenal gland then cannot get out so the blood clots and then infarcts or kills off the gland. No way to know if the other one is healthy by any test until have issues. Wondering how long this has been done yet not part of our donor consent so went to our medical library. Dug through the urology textbooks reading about live kidney donor surgeries over the last 40+ years. This tying off the adrenal vein has always been part of the left sided procedure. Guess they think we have a spare there, too.
I then dug through the laparoscopic urology literature. Found article where urologists found that the majority of patients who adrenal blood supply they checked before any nephrectomy, had but a lone adrenal vein. So the long held belief that we had collateral or extra veins to then drain the adrenal when its main vein was tied off was not correct.
Glad you got answers although this many years later. If any donor has prolonged fatigue (more than 6 months), depression that is not usual for them, sleeplessness, etc then should get the adrenal checked. Would be nice if had preop and postop adrenal function tests--and if did not recover at 6 months, consider is a permanent issue. And if checked adrenal gland blood supply when in there with the scope. I have been doing further review with a nephrologist and endocrinologist. Will keep you posted if get any transplant center to do a study on this issue. Doubt it.
Let us know who things go for you. Hope are feeling better soon.
Take care--Donna
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Donna, I want to thank you for all the research you've done into this issue. I am going to discuss this with my surgeon before the transplant. Without you and Rob bringing this up, I never would have known about the adrenal gland issue.
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as a non-directed donor dec.,2009....i was reading my post-op report which states"the adrenal gland was removed off the upper pole of the kidney, and with sharp dissection and cautery dissection, taking great care not to injure the upper pole of the kidney or any of the arteries underneath it." when i ask the director of the transplant team at a recent app't., he "reasssured" me that they did not remove the adrenal and that he had never had a pt. who later suffered adrenal insufficiency. it sounds like an issue that needs a great deal more attention.
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Just to clarify. Of course, the surgeons say they did not injure or remove the adrenal. They altered its blood flow. Again, if no blood can drain out of the gland via the vein then the blood that comes into the gland forms a clot which in the end, kills off this gland. While your surgeon may have never heard of this is maybe he/she does not follow their donors. These cases are out there. Read carefully what the operative note says about your adrenal vein.
I have done the research because of the donors who have this issue. Is an easy explanation when the donor does not bounce back from surgery physically or has depression postop. My recovery was prolonged and slow physically. Now I have serious suspicion that my surgery effected my adrenal (at least temporarily.) There are many signs and symptoms of adrenal dysfuction along with labwork that can be followed. Many programs mark 100% of their donors lost to followup so we don't even know if they are alive. Not even checking on the donor's kidney function so why would programs care to follow donors in more detail.
We have a protocol here in Cleveland written by a nephrologist and endocrinologist. Need a surgeon/program who cares enough to look at this issue. This will be the tough part.
Donna
Kidney donor, 1994
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The results from my adrenal test shows its ok. I am glad its not a kidney donation problem. best wishes, Rob
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Dear Rob,
Thanks for the up-date. Hope you will be feeling better.
Fr. Pat
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I've been reading these postings re the link between adrenal fatigue and left kidney donation. In April, 2003, I donated my left kidney to my son when his first kidney transplant failed after 7 years. Initially, I recovered from the surgery very well - and my son still has my kidney 8 years later. While he is doing ok - so far, so good - I have been having symptoms of my own that began in the last 3 years or so. I am 62 years old and have been working full time in schools (administration) for 31 years. Last year, I began to have a number of symptoms that seemed unusual for me. I've been excessively tired at home and at work, even falling asleep while sitting at my desk or at home in the middle of the day. I wake up tired! I have cravings for sugar and/or salty foods, I've gained fat around my abdomen, and have had depression and anxiety. I don't feel like myself at all. When I began doing some research I read about adrenal insufficiency. I already have hypothyroidism and take meds for that, which don't seem to make much difference. I see my nephrologist twice a year, and have an appointment in a couple of weeks. Should I ask him about the connection of donating the left kidney and feeling so unwell now? Has anyone else asked their doctor about this outright? I would be grateful for any input from any of you.
thanks - this is my first post on LDO in about 7 years! Michele
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Michele,
Nice to hear from the veterans! I donated 3 1/2 year ago.
You should certainly bring up any issues you are having with your doctor. Donors are generally followed for 2 years post donation. Studies that are done are looked at retrospectively which means many donors have been lost to follow up so it is hard to know how we all actually do 15, 20 years after we donate. There are studies which suggest that decreased kidney function, if it happens in donors, is after 10 -15 years. That is why follow up is so important.
I am sure your doctor will do a full blood and urine workup for you. Make sure to let him/her know of all your symptoms when they occur etc. It could be unrelated to the donation but either way, there is no reason you should not get answers to your questions and find out what is going on so it could be corrected. Do you still have contact with the transplant center? If so, have you seen a nephrologist there?
Keep us posted.
Sherri
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Hi everyone. Kidney transplant recipient chiming in here... I was born without a right kidney, and 40% of my left. My first Tx (tx-transplant) was in 1993, and my second TX was in 2005. My brother was my first donor, and they removed his right kidney. His kidney gave me 10 wonderful years, and my brother has had no problems. :D
My spouse donated her left kidney, and she has had, what seems like, adrenal issues since the donation. I honestly don't understand why Transplant Centers are not following donors. It feels very wrong and unfair to you guys. Actually, it is also unfair to the recipients. We have the right to know what our donors are risking, and if we are okay with understanding your long term and short term risks. My gratitude is unmeasurable towards the donor community. If it wasn't for the courage of my donors, I would have never had the chance to fall in love, become a mother, and experience all the beauty life has to offer. With that being said, living with kidney disease has not given me the highest quality of life. I have been in and out of hospitals since I was born. Feeling weak is normal for me. It is not a normal issue for people with full kidney function. If donating a kidney can cause these issues, you have the right to know this before donating a kidney! Now, if there is a way to treat this issue, if it should happen to you, and you choose to donate after knowing this.. Then wonderful! But if doctors are not studying adrenal issues post TX... well... it really bothers me. No, it angers me.
I hate wondering if the reason is because the doctors worry nobody would donate if they could have problems after. If a proper study was done, then perhaps there could be an easy solution for you instead of you walking through the dark about this topic. I care about our donor community. I thank you for your courage trying to save lives. Do not feel like you cannot speak up about issues you have post donation. Don't feel guilty for talking about it.
Best to you, Gina McNally-Malanga
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Unrealated to the donation, but just if you were wondering if I got the medical issue resolved, I sort of have. I tested postitive for Lyme disease and will start a treatment for it. best wishes, Rob
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Hi, Rob.
Good luck with the Lyme disease treatment. Feel better! Snoopy
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Oh Rob, so glad you got that diagnosed. It is hard to diagnose as well.
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I donated a kidney to my son a year ago. I was readmitted 3 times immediately after donation with hbp, vomiting weight loss high heart rateetc. It seems they caused a blood clot in my adrenal gland and it was overfunctioning. I am still having these issues a year later and after ruling out a pheochromocytoma it seems that the damaged adrenal gland is stilloverfunctionig and putiing these catacholamines into my system. I am looking for any similar conditions. I never had any of these problems before
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Ask the doctor to do adrenal function studies. Is worth checking this out. After my donation, I was very tired and in reviewing my records only recently found that I had a small area of collapsed lung (pneumothorax). If I had known about the adrenal issues in 1994, would have had this checked as to cause of fatigue, shortness of breath and sluggish mental recovery. Since I only have the pneumothorax info am attributing my slow recovery to this. Over the years, we have learned from donors that the renal insufficiency issue is real. We know donors who have had this issue early post donation, later in their recovery and later in life.
Let us know how goes.
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It has been awhile since anyone posted to this, but I do have some hope seeing that others are having issues with their adrenal function post left donor nephrectomy. When I first started looking for this in 2009, I couldn't find anything really. I donated in late 2003 and have been "sick" ever since. I didn't realize that something was really wrong until after the birth of my second child in 2008. Until that point, I just thought I worked a lot and was tired. After the birth, I started to have many more symptoms of adrenal fatigue/insufficiency. I went to an endocrinologist, but when she tested it (reluctantly) she said I was fine. After a little more searching, I went to another doctor who used a saliva test. She said that I did have a problem with my adrenal function and gave me some expensive supplements to take. They sort of helped, but were very expensive. Some days, I have some good energy and most days I don't. I have also had hormone issues, hair loss, weight gain, brain fog/memory issues, and if I get sick... I get it way worse and for much longer than even the baby. I donated at 26 and I wish I would have known that they were going to shut off my left adrenal... my surgeon said that they take the left kidney because it is easier to reconnect in the donor... longer vein, artery, and ureter to hook up in the recipient. No mention of the adrenal gland. I will be 10 years post op this year and while I DO NOT regret giving my kidney, it has been very tough to go from an active and fit person to someone who is lethargic and tired 99% of the time. Best of luck to potential donors and their recipients... please do not even consider the left kidney for donation.
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he donors who have this issue. Is an easy explanation when the donor does not bounce back from surgery physically or has depression postop. My recovery was prolonged and slow physically. Now I have serious suspicion that my surgery effected my adrenal (at least temporarily.) There are many signs and symptoms of adrenal dysfuction along with labwork that can be followed. Many programs mark 100% of their donors lost to followup so we don't even know if they are alive. Not even checking on the donor's kidney function so why would programs care to follow donors in more detail.
We have a protocol here in Cleveland written by a nephrologist and endocrinologist. Need a surgeon/program who cares enough to look at this issue. This will be the tough part.
Donna
Kidney donor, 1994
Donna, I was lucky to get into a donor study, which hopefully will follow me for the rest of my life. There are no questions about hormones or related subjects on the questionaires but it will show up on the Regularly Prescribed Medication Questionaire. I have spoken to the Study Coordinator & asked if it would be possible to somehow get questions that relate to hormones into the survey. She will be talking to the doctor in charge. This is a lengthy process & we are the people who have to somehow make this a topic for more general discussion.
Just by discussing hormones here on this board, potential donors will have another question to add to their list for discussion with their donor team. These questions will/shouid be recorded somewhere in the donor process & eventually answers will/should become available.
We knew going into the donation process that there were a lot of unanswerable questions & made our decisions on the best available information. So none of this is really a surprise.
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Hello Donna,
I know your post is a tad old but, I am having symptoms closely related to your article. I donated at age 48 (7/12/11) and am now 51. Just recently, I have started experiencing sleeplessness, mild depression, fatigue and mood swings. I was a "right-side" donor so the left/right dilemma of the adrenal function puzzles me. Obviously, both glands have a function. I have been told that the remaining kidney can increase in size (however slight). Are there other factors to consider being a right side versus left? What about many of the substitute, man-made ingredients we put into our system? The hospital that performed my nephrectomy has not been overly diligent in checking on my continued progress or regress. I'd gladly keep in touch with them (or anyone for that matter) to produce tests for some of these issues? Why is the donor left out in the cold?
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Just my 2 cents... no answer , just sharing.
I've been following up on the "low energy" threads since my donation nearly a year ago. My blood work at 6 mos and 9 months came out perfect (including hormones). But, I have been wiped out for the past 11 months. I've had spurts of energy here and there for a couple of weeks, but I've gone more weeks absolutely exhausted. I can't figure it out. My only guess is that I was so hyped up on adrenaline from preparation of donating that I’m still coming down from it, but I still believe its physically related some how. :-\
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I donated my kidney back in March of 2014, it's been some time now, but since then I have been having issues with feeling fatigued and generally tired all day.
My procedure was an "open" procedure and I had my right side kidney removed.
I have a checkup scheduled with my primary caregiver coming up in January, I'll be sure to bring it up to him when I go in.
I really hope this is something that will eventually go away, or at least adjust to.
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This post pinned as it's among our most popular.
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Fortunately this is a rare occurrence. I've worked at my transplant program for 16 years and have had one occurrence of adrenal dysfunction. Needed cortisone for a short time and it resolved. We do warn patients that this could happen. Most are willing to take the risk to help a loved one.
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Glad some centres warn patients about this. I have zero energy after 8 months and a huge weight gain. My blood pressure is out of control. I brought up adrenal dysfunction at my follow up this week. They did the test after my husband/recipient insisted they do it. No one warned me or even mentioned that recovery was more than 3 months at most. They now say I have sleep apnea and not donor related. We are very frustrated. Hopefully the results will show something and I can feel good again. I honestly don't remember what it was like to feel good.