Wednesday, January 26, 2011

As a living kidney donor, how much do I need to worry about complications down the road?

Please see:

Have included a link here for living kidney donors.  The website tells about possible complications from only having one kidney.  Some of it is pretty scary stuff, and I am wondering how much of it I really need to worry about.  When I asked about later problems for donors before I donated my kidney to my husband who had been on dialysis for many months, I was told only: "Sometimes, donors are prone to high blood pressure later."  That was it, end of story!  As a person who has always had low blood pressure, I figured I would be fine.

Oh . . . there was also something said by an "advocate" about some donors who had temporary partial numbness in their arm, but that was made light of by the surgeon later when I asked about it.  After waking up with a totally paralyzed arm from a brachial plexus/nerve injury because of the way I was positioned during the laparoscopic surgery, months of painful therapy and many months of painful recuperation, I would tell anyone who is thinking of doing this: Do lots of research, and then when you think you know it all, do more!  If I had it to do over again, I would go for an "open" surgery instead of the laparoscopic procedure.  What's a big scar on your midsection compared to not being able to use one of your arms/hands?  When I asked her, the advocate had told me that was the way she would go, and then her opinion was dismissed by the surgeon when I asked him about it.  Had I only known!  What a scary experience, as it was not known at first if I would regain use of my hand and arm or not.

Thank God, I regained most of the use and feeling back in my arm and hand, but it will never be at 100% again.  Yes, my kidney saved my husband's life, as he was ready to quit dialysis, rather than live with being hooked to a machine for 4 to 5 hours, every other day . . . but we also did not fully appreciate all the side effects that all the medicines he now has to take would have on him.  That is, not until later.

What really angers me is that the hospitals and doctors who do the transplants have no protocols or follow-ups for the donors after they harvest the kidney.  When I told one of them later that I thought this was crazy, they had little to say on the matter!  In the meantime, I found a personal doctor/physician's assistant who appreciates my concerns and does a yearly work-up for me, also including anything that might show problems with my remaining kidney.  So far, so good. 

I would love to hear from anyone who has had a similar experience . . . anyone out there?


  1. about a labor of love. I am blown away. I know of two people who donated kidneys to loved ones and have yet to hear that they have had complications...I was in awe of them when I learned what they had done.

    I had a large kidney stone lithotripsied about 5-6 years ago and wonder what kind of damage that might have caused the kidney, if any.I know I would more than likely donate to my loved ones if they needed me to...and yet...I hear ya...scary stuff. HUGS

  2. Hey Lilly,

    What you endured is unconscionable, and you have my upmost sympathy. You mentioned the possibility of an open procedure, so I have to wonder how long ago you donated. I ask because I don't think most surgeons would even consider performing an open procedure on someone unless it was an emergency situation. This so-called advocate - am I to guess she wasn't a living donor herself? And isn't that always the way of things?

    Yeah, there's some scary stuff out there potentially lurking for living donors. The fortunate ones avoid the worst of it, but isn't the point that we deserve to know the possibilities? And more so, that the transplant program who caused the problem treats it?

  3. I donated almost 9 years ago. Do you have any stats on how long ago open procedures were common? When I was finally released from the hospital, I was then left totally on my own to find the right health providers to help me. I have to wonder how much of my "complication" was even documented, as I think they were really worried I would sue.

  4. The first lap surgery occurred in 1995 (I had to dig through my vast folder of documents, don't ya know...) A 2003 study said there was a huge learning curve for surgeons using the hand-assisted lap procedure:

    "Steep learning curve translates into longer operative times and unacceptable high rate of
    complications. Present new life-threatening complications that are usually NOT seen in the open approach. Awareness of their potential and knowledge of management prevent mortality and reduce morbidity—patient safety.

    The uncritical application of laparoscopy due to inexperience can lead to serious complications. The complications unique to laparoscopy include those related to creation of pneumoperitoneum, patient positioning, and surgical intervention." (emphasis mine)

    I wish I could say differently, but living donors are stil saddled with the responsibility of their own long-term care. It's a potential disaster really because most living donors only know what the transplant centers tell them (which often isn't much) and they trust that health care professionals know what's best for them. What a lot of us have found out the hard way is that many providers have NO idea what to do with living donors. The only thing that often stands in the way of detrimental treatment is our own knowledge and self-assertion.

  5. Thanks (again) for the info! Happy that you took it upon yourself to start the site for living donors, as there is very little out there for us information-wise.