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Author Topic: Post-Donation Hormonal Symptoms  (Read 9420 times)

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Offline brenda

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Post-Donation Hormonal Symptoms
« on: June 12, 2011, 09:12:36 PM »
I donated a kidney on 5/11/2011.  Immediately afterward I began having hot flashes and insomnia similar to menopause.  When I asked, my surgeon told me that one step in a nephrectomy is to cut the left gonadal artery which supplies blood to the left ovary or testicle depending on the donor's sex. He said that about 40% of male donors experience left testicular swelling and that many female donors report "hormonal symptoms."  He also stated that the blood supply would regrow and that these symptoms would end after a few months.

I have not seen this reported anywhere on-line and certainly didn't hear about it from my medical team before the surgery.  Have any of you experienced this?  Did the artery really regrow?  If so, how long did it take?

Thanks,
Brenda

Offline lawphi

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Re: Post-Donation Hormonal Symptoms
« Reply #1 on: June 13, 2011, 09:10:05 PM »
What!  Where do they stitch it too? 

I found studies that describe pelvic pain. Only a quarter of donors in this ancient study needed any follow up to improve the blood flow. There issues were pelvic pain.

Should you need this, you will likely have to return to your center. My center told me that they would cover any post transplant complications if I came back to them.

Bridge Paired Exchange donor on behalf of my husband (re-transplant) at Johns Hopkins.

Offline mobico

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Re: Post-Donation Hormonal Symptoms
« Reply #2 on: February 25, 2012, 05:10:21 PM »
Hello! I donated a kidney 3 and half weeks ago, and am feeling pretty good in general. I have just registered for this site. One of the reasons I came here was to find out if anyone has shared my experience. I am male, and have significant left testicular swelling and tenderness that goes up the left side for a bit. I read on one other site that this can last for months, and that in one case for years! So I don't know the answer to your question, but - like yourself - I certainly hope so! I have my first follow-up appointment soon, and I plan to ask the doctor then. Also, since this is an old post, perhaps you can chime in - have you experienced any improvement?

Offline SWB

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Re: Post-Donation Hormonal Symptoms
« Reply #3 on: February 25, 2012, 08:43:09 PM »
Mobico,

I did my last round of pre-donation tests at UAB a few weeks ago and the Surgeon actually pointed out the exact testicle swelling issue you noted.  According to him, it is a common situation that can occur a few weeks after surgery, can be very uncomfortable, but is temporary.  It should last no longer than a few weeks and he suggested a very tight pair of underwear or jock strap for support. 

Sorry to hear you are experiencing it unexpected.  Of course that now makes me wonder if it is more common than I thought and I have something else to plan for  :-\ Small price to pay in the long run though.
Scott
Donated right kidney to uncle
October 18, 2012 at University of Alabama (UAB)

Offline mobico

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Re: Post-Donation Hormonal Symptoms
« Reply #4 on: February 25, 2012, 08:56:35 PM »
Yeah, would have been nice to have known about it beforehand, but ultimately there is really no difference. I came home with it from the hospital, and three weeks later there is no improvement. But I'm glad to hear that it should be temporary! Bast of luck with your surgery - it is definitely a unique experience!

Offline poodles

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Re: Post-Donation Hormonal Symptoms
« Reply #5 on: March 02, 2012, 12:27:29 PM »
I specifically asked about this when I met my surgeon prior to surgery. He said that the adrenal gland would be left in place. Didn't see how there could be blood flow with the artery & veins closed with clips. Can't remember his precise answer but it was basically not a problem.

After my surgery I had what I now know to be hormone imbalances. I would still have proceeded with the donation if I had known but it would have saved a very long time & a lot of trouble if I had not had to diagnose myself. Recently I found a doctor who has helped considerably.

This book, just published last year "A smart woman's guide to hormones" by Lorna R.Vanderhaeghe with Alvin Pettle, MD. has very precise information that is understood by people with no medical background. It explains the interaction of the various hormones & gives some simple specific advice. This is a Canadian book & does not show up on a Amazon search.

Offline PaulaHalvo

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Re: Post-Donation Hormonal Symptoms- specifically hot flashes
« Reply #6 on: March 03, 2012, 02:01:10 PM »
I called my doc because I was losing a pound a day after surgery. He said that was normal and to expect hot flashes because sometimes our bodies go into metabolic overdrive to get things working again. He was right, I did have some, though they seem to have subsided now.

Offline Fr Pat

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Re: Post-Donation Hormonal Symptoms
« Reply #7 on: March 03, 2012, 06:00:45 PM »
     Regarding the adrenal gland on the side of the donation: someone posted earlier that even though the gland itself might not be removed or damaged in the surgery, what is done to the blood vessels can reduce its ability to actually get its hormones INTO the blood stream. I don't recall all the details (and I'm not a medical professional) but that adrenal gland can be intact and healthy and yet not have its hormones draining into the blood vessel the way it used to.
   Fr. Pat

Offline jstx

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Re: Post-Donation Hormonal Symptoms
« Reply #8 on: March 21, 2012, 03:14:48 PM »
I see the adrenal post has been moved up towards the top of the board-someone posted in it recently.  I went back and read through it, especially after seeing this post and it is interesting.  I'm 9 months out and have continued to feel lethargic....I can't tell if it is stress---there is quite a bit of that in my life right now or if it is adrenal related.  Very interesting topic for sure.  I have no idea if my adrenal gland was affected by surgery and am not sure how to see that.  The other post mentions post-op documentation but when I asked my hospital for copies of my records I don't recall getting anything related to my actual surgery......I also don't remember them ever mentioning problems with the adrenal gland but I could go back into my conversations with them (I tape recorded them) and listen again.
Donated left kidney on 6/6/11 to a recipient I found on LDO
Johns Hopkins Hospital
Baltimore, MD

Offline nicholleoliver

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Re: Post-Donation Hormonal Symptoms
« Reply #9 on: March 21, 2012, 03:52:17 PM »
If you donated your left kidney, then your adrenal gland is affected.  From the research that I have done, your adrenal gland on the LEFT uses the same vein as your kidney.  When you donate your kidney, they remove the vein, artery, and ureter.  I may not be an MD, but I know enough about the circulatory system to know that without a working vein, that adrenal gland doesn't function properly anymore.  As a note, this is note an issue on the right side of the body as the adrenal uses the superior vena cava on that side... this according to what I've read.  I'm not a doc or nurse.  Just so you know, I was young when I did this and I started having perimenopausal symptoms and have to take natural progesterone cream... this is a bummer and I think people in the living donor and transplant community should know that this is a potential problem.  I think that the prevailing wisdom is that you can live just fine with one adrenal.  My life has never returned to "normal."

Offline Donna Luebke

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Re: Post-Donation Hormonal Symptoms
« Reply #10 on: March 22, 2012, 04:53:29 AM »
After reading through your note (Brenda) and all the responses, the issue of ligating (tying off or cutting) the gonadal or adrenal vein means that the structures below no longer get blood supply.  While a surgeon may claim they do not remove the adrenal, laparoscopic investigations of the adrenal structures have noted that many of us have but one adrenal vein.  It was thought we had more than one but one published surgical paper I found said that 80% (I forget the size of the sample studied) had but lone adrenal vein. Again, if the blood supply is cut either above or below a structure the function of that organ, gland, etc is altered. 

Not sure why a surgeon would claim that the gonads would be fine when the blood supply longer exists.  The testicular swelling and female hormonal/anovulatory issues are not part of any published consent.  Doubt will be in any final OPTN consent policy unless someone currently serving pushes for complete disclosure like so many of us have in the past.  Consent is about just this--the complete, accurate, and honest disclosure of all consequences of a surgery.   
Donna
Kidney donor, 1994    Independent donor advocate
MSN,  Adult Nurse Practitioner
2003-2006:  OPTN/UNOS Board of Directors, Ad Hoc Living Donor Committee, Ad Hoc Public Solicitation of Organs Committee, OPTN Working Group 2 on Living Donation
2006-2012:  Lifebanc Board of Directors

 

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