Big Questions About Long Term Risk

[sidneythekidney]

I'm looking for some insight from those who have donated OR have decided NOT to donate a kidney. I am set to donate THIS WEEK, and my preop meeting with my surgeon sent up a little red flag that got me researching more and finding information that has me more than a little uneasy. At the preop, I said I understood that with one kidney, my remaining kidney would increase in size and do the work of both kidneys without any increased risk to the one kidney, a nice but possibly oversimplified idea found on many sites painting warm, fuzzy pictures of organ donation. The surgeon, thank goodness for his honesty, said that there IS an increased risk of kidney failure in the remaining kidney, approximately DOUBLE the chance of failure if no donation were made. This is not just because I'd have no second kidney to take over. The one kidney would be at increased risk.

He put it in terms of the risk doubling from 100 in 10,000 to 200 in 10,000. Okay, in my book, that's 1 in 100 doubling to 1 in 50. The extra 0s just make the numbers look more astronomical.

So I started researching the increased risk of kidney failure for kidney donors, and first I found that there is not much long-term data. Most studies seem to follow donors for an average of about 8 years with longer studies ceasing after about 15 years. I intend to live longer than that.

What IS known in the more recent studies (2013-2014) from Norway and the US is that there is a decrease in life expectancy for donors of about .7 - .8 years. Such small numbers make the decrease seem slight, but doesn't that work out to be about 7-9 months decrease in life expectancy? The info seems to be from reliable, objective sources.

Yes, I can help a good guy (not a relative)live 15-20 years longer. Is it worth giving up 9 months of my own life to do so?

I know that different websites are biased one way or another. Livingdonor 101 is biased against donation, but other sites are biased in favor of donation. After all, living donors are needed to help those on the long list for organ donation. But I also know that transplant surgery has to be lucrative for hospitals. Perhaps certain pro-donation websites do not fabricate information but they tell only half the story. For example, some tout the statistic that kidney donors statistically live LONGER than nondonors, as if there were a health BENEFIT to donating. A little common sense shows this is untrue. Living donors are being compared to the general population not to others who were healthy enough to donate a kidney but decided not to.

I am VERY sorry if this is disturbing to anyone who has donated or is ready to donate, but I'm hoping to get some good feedback from those who would understand my concerns.

[Fr Pat]

Dear "Sidney",
     Hi. I donated a kidney way back in 2002, and at that time the information I had indicated a very low risk. Since then I have learned a lot more about both the short-term and long-term risks involved. The challenge has been to find studies that:
--- compare donors to a matched control group that were equally healthy but did not donate.
--- follow them long-term (decades) and not just for the first couple of years.
--- have enough participants to make the study reliable.
     From what I have read, the general trend is to recognize more long-term risks for kidney donors. Knowing what I know now I believe that I would still donate, but it is indeed a matter of choosing to accept some risk in order to help other people. In my own case I have accepted risks in the past in order to help others (e.g. serving in Nicaragua and El Salvador in dangerous times) so to me the risks involved in kidney donation have seemed small in comparison. But it is indeed a very personal decision, and it is great that you are getting yourself well informed.
      best wishes,
    Fr. Pat

[sherri]

Sounds like you have been asking the right questions in order to make an informed decision. Agreeing to undergo and elective surgery that will not benefit you physically certainly will raise more questions. These surgeries are usually planned so take the time to make sure you are educated, well informed and feel comfortable with the risks. We all take risks every day. Some people feel more comfortable than others with the risk and that is what every donor has to evaluate for themselves.

You may find it helpful to discuss this with an independent nephrologist who is experience with donor nephrectomy and who has only your interests at heart. In addition, there should be a living donor advocate on staff who should be representing your needs.

This is a big decision. The risks quoted are "minimal" but when they happen to you they are 100%.

Best of luck as you decide if this is something  you would like to do.

Sherri

[CK]

I did a lot of research and concluded that I take a bigger risk every time I start my car and pull out of my driveway, and that is still true, even if a couple of studies show increased risk to kidney donors.  Driving a car is far more risky than donating a kidney.

Was it worth it to me to give someone I loved a potential 25 years of life? Yes.  Would I trade 9 months of my life for him to possibly have 25? Absolutely. 

Personally, I think that life is risky and I'm not going to NOT do something that could save someone's life because it MIGHT mean I die earlier as a result.  But that's a personal decision, and only you can decide whether your recipient is worth the risk.  You are never going to be at a place where there is zero risk, so if no risk is tolerable, then it isn't the right thing for you.

[sidneythekidney]

Of course tho only way to avoid risks is to wrap yourself in bubble wrap and stay inside every day. Life has inherent risks, and this risk has a huge upside of changing someone's life. Just to put my situation into perspective. the prospective recipient is not a loved one. For a family member or dear friend, there would be no indecision on my part whatsoever. The recipient would be more than an acquaintance but not quite a friend. I know that does not make his life less precious.

I never contemplated donation with the idea that there would be zero risk. I just want to know all the risks and information. I just feel like a potential donor is entitled to all the information not skewed by manipulated statistics that mask the risk.

It would be more blunt but easier to understand if a doctor told me, "Your risk of kidney failure is very small over your lifetime given your present health. If you donate a kidney, the chances of failure of the remaining kidney double." It is a little more sobering and just as accurate as giving the statistic with bigger numbers.

The one nobody ever mentioned to me was the probability that life expectancy would be decreased, not do kidney failure, but due to hypertension and decreased kidney function contributing to other factors that may be the root cause of morbidity.

[Snoopy]

Dear sidneythekidney,
   You got a lot of good, solid advice from the other posters, but I'll just toss in my 2 cents.
   I did quite a lot of research before finally deciding to donate.   It is true that there are important methodological holes in the data.  But note that there are very often holes in the data about lots of medical and surgical procedures; it's the nature of the beast.  It does not indicate any conspiracy to entrap potential donors.
   That said, I've sometimes been uneasy with "living donor boosterism" (not here on LDO) that makes light of the risks.  So, you are asking the right questions, and deserve a straight answer.
     In looking at the risks, "doubled risk" sounds worrying, but when it's from 1:100 to 2:100, it still seems "doable" to me (though the available numbers coming out of the then-new studies were somewhat more favorable when I first began my process 5 years ago than are some of today's newest numbers).  Not that I look for risks, but I've taken bigger risks in my life already.  And, while I was beginning my process, I kept telling myself:  if I came across somebody trapped in a burning building, and I thought I could save them without killing myself, wouldn't I try? And, that's got to be higher risk than donating a kidney".  Of course, as Sherri wisely noted, when it happens to you, it's 100%.
   Still, there's one other point:  you do have some control over your fate here.  If you watch your weight, manage to keep your blood pressure down, and maintain an overall sensible life-style, you'll probably be improving your odds.  Of course, this also relates to why transplant centers sometimes are so "snobbish" (picky) about giving medical approvals to donate.  They try to screen out those at higher risk for later complications.
         Be well, Snoopy

[CK]

I've been thinking about this issue, and I hope they will continue to do studies on the topic.  Like Snoopy said (more or less) you can never really be sure of accuracy of the data or what it means unless more studies are done.

The past studies said that living kidney donors have a longer life expectancy than the general population, which remains true.  Many of us are in excellent health to begin with and that's why we can donate, some of us in middle-age, so we still are likely to live longer than average. One of the studies I saw said the control group was people "who could have donated" - not sure what that means. Did they do the entire workup we had on everyone in the control group? That seems impossible. (Granted I probably didn't see the whole study and my days of being able to interpret the validity of that stuff are long gone).

I guess it still boils down to what you can live with in terms of risk - and that's different for all of us. I personally would not take the risk of surgery to do a non-directed donation, so there are limits to my willingness to do it as well.

[Fr Pat]

Dear "Sidney",
       If you haven't yet found this out, there is also the risk (about 9% of male donors) of testicle pain on the side of the donation, sometimes severe and sometimes requiring further treatment. I did not have this, but it appears that despite the medical literature on this some hospitals still do not mention this risk. At the "facebook" page of Living Donors on Line there was a recent posting of an article about this, with several comments by sufferers.
     Fr. Pat

[sherri]

Sidney,

I am re-reading your post and some of the comments. It seems as if you were surprised to find out the risks during the meeting with the surgeon and that made you re-think or re-frame the information you had initially been given or had read about. There are a lot of studies about how to increase living donor donations, as there was an increase when the less invasive laparascopic surgery was introduced, and then it tapered off and even decreased over the years. Anyone undergoing any type of surgery know there is an inherent risk. I wasn't so much afraid of dying during the surgery or soon after and this seems to be the statistic that people quote (3 in 10,000). What I was worried about (and sometimes still am, but the anxiety has lessened over time) is what would happen to my kidney function, would the diseases that run in my family (HTN, diabetes, IgA nephropathy) effect me as I age or my children. And most importantly if something did happen, would the hospital who was so willing to harvest my kidney, help me maintain my kidney function before putting my on the list so I could have a transplant? I think what patients want, is to trust their doctors and their hospital. No one wants just to be the cure for someone else. Making surgeries less invasive with shortened length of stay does not seem to increase the numbers of donors. Would love to see a study about what makes donors decline to donate. My guess is trust. Knowing the risks but also knowing that should something go wrong or should they need care and not have access, the hospital who did the surgery would stand by their donor. Would that doctor who has given you all the numbers, would he say to you, we expect everything to go fine, but if it doesn't we will not let you go.

From the posts here the discussion about related donation and unrelated also cropped up. Yes, as a sibling, I did not have a "choice" to donate. I was the perfect match and if I did not donate my sibling would have gone on dialysis or have had to find another match that would never be as good as mine. As an unrelated donor, there is less pressure and he ability to remain  a little less involved.

I hope Sidney, that you find the answers you are looking for and whatever your decision, wish you all the best. Please keep in touch.

Sherri

[sidneythekidney]

Just an update: It's been two and a half weeks since the surgery. Yes, I went through with the donation. The potential risks for donors is rather speculative, but the benefits for the recipients are clear. Both donor and recipient are doing well. Just a heads up for other potential donors: The first couple days after the surgery were rough. Laproscopic or not, it is real surgery. I'm glad I did it. Now I have to take extra good care of myself to make sure I'm around as long as possible for my own family and loved ones.

[Fr Pat]

Dear "Sydney",
     Congratulations to you both! Nice! I has been over 13 years since I donated and I still cherish the memory.
     Please keep in touch. You will find that the FaceBook page of Living Donors on Line (and also "Living Kidney Donors") gets a lot more traffic than here regarding questions, experiences, updates, etc.
     And looking to the future, the "Transplant Games of America" will be held in Cleveland next summer (2016) and a couple of hundred living donors will be there along with a much larger number of recipients and donor families to celebrate the Gift of Life through ceremonies and athletic competitions. Info at www.transplantgamesofamerica.org and you canlocate your nearest State or regional Team there.
               Fr. Pat

[Karol]

Best wishes for many happy, healthy years for you and your recipient!

[sherri]

Hi Sidney,

Welcome to the Donor Club! sounds like you were able to come to a decision to move forward. Wishing you and your recipient good health.

Sherri