adrenal function after donation?

[sherri]

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

[scunytz]

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. 

 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

[Rob_h]

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

[Snoopy]

Hi, Rob.
  Good luck with the Lyme disease treatment.  Feel better! Snoopy

[dodger]

Oh Rob, so glad you got that diagnosed.  It is hard to diagnose as well. 

[alfort]

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

[Donna Luebke]

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. 

[nicholleoliver]

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.

[poodles]

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.

[davfrzr1]

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?

[Mizchelle]

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.

[RickCunanan]

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.

[Clark]

This post pinned as it's among our most popular.

[donor99]

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.

[Beagle lover]

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.