even if a match they may not let her donate

[dyann]

I recently found out thateeven if my daughter is a match for me that they may not allow her to  donate  reason diabetes runs in my familoy and they fear the family history is to strong and this could interfer with her health as she gets older. however she is aware of the risks and my kidney issues were not caused by my diabetes I sat down and had a long talk with her and even went over howhard becoming pregnant maybe but she does not care  she said   I will adopt  which since she was a little girl she had stated wanted to adopt.  what are your thoughts

[MooseMom]

I suspect that she may not have a choice.  Doctors are bound to "do no harm", and if they collectively decide that removing a kidney from a person who has a high risk of developing diabetes because of a strong family history of the disease, they will not perform the surgery.  My husband has diabetes in his family, and he would like to donate to me (well, via some sort of exchange arrangement as he is not my blood type), and he rants all of the time about this, declaring that as long as he understands the risks, then he should be able to donate if he damn well pleases.  But you can't force a doctor to perform surgery on a healthy person...

[cariad]

I don't know a lot about diabetes (I am assuming this is type II posing the concern) but it seems a bit obsessive to reject someone on the basis of something they might get. When you say 'strong' what do you mean? Does nearly everyone in your family come down with it in time? I have been informed that my donor is prediabetic, which I think is a bit of a bs term myself, but no one asked me. I know him, and he really, really wanted to be the one to donate, so I doubt it would have changed his mind if he could have seen into the future. Besides, you don't get diabetes from kidney donation.

Who told you that it is difficult for donors to conceive? That is absolutely untrue. Did you mean diabetes can have this effect? If your daughter is really serious about this, your best bet may be to get an eval at another center. If two different centers say no, odds are you won't get a different answer. If one says OK, then you can always return to the first center and tell them this. Centers will fight for live donor transplants.

[paris]

When I was going through work-ups with Johns Hopkins, they disqualified a donor for being prediabetic. He had two test that showed his level at 100. That was it for them.  This potential donor is athletic, BMI of 18%, no health problems.  But two blood draws and they were done evaluating.   Maybe try another center and see what they find acceptable.   Hope you find a good solution.

[RichardMEL]

It might seem a "bit obsessive" but like MM said they have a duty to the donor as well as the recipient. Remember you're potentially subjecting a perfectly healthy person to major surgery and removing an organ which has all kinds of potential risks and complications. If there's a chance, no matter how small, that that could contribute to future health issues for the donor than they are obliged to not go ahead - not just for the donor's health, but let's face it you don't want to set someone up to potentially burden the health care system down the track.

On a personal note I have been through this as my sister was knocked back at the last hurdle because she had a very minor elevation in her blood pressure. It really was a 50/50 call and they erred on the side of caution. To be honest after the initial disappointment I was actually relieved because all through this (and even as my brother is slowly progressing with his own tests) I have a burden on myself of responsibility. While I understand in my head that my sister was well aware of potential risks, and she made the choice to want to donate, I know that I would still have felt a responsibility should something have happened to her down the track that could have been caused or affected by her decision to donate. True, that minor BP thing may have lead to nothing, but I KNOW that I would feel horrible taking an organ from her if it meant future trouble for her - I would never want to eb that selfish(in a way) and affect someone else's health through my needs. So, when she was knocked back, well I figured that was actually a good thing because I know that's something I would worry about.

So from that point of view I support the transplant team's objective to "do no harm" to donors in this regard. it's frustrating and worrying, but I think it does balance the best interests of all.

A topic for some other time/discussion might be "but what if the donor REALLY wants to go ahead and is willing to take that added risk?" or "Should a bunch of strangers - the transplant team - make a decision for a donor?" There's a whole minefield of ethical and moral questions there - and I don't think you could ever get a "right" answer to that one. I mean should there be a mechninism where the transplant team present their decision as a "strong recommendation" but the end decision is still up to the donor and recipient? I don't know.

I do know that with my sister if that had been presented to me I would have said no myself.. but that's just me.

[cariad]

I understand what you're saying, Richard, and I would agree with you in most circumstances, but in this case she's not testing positive for anything, they are just looking at family history. I wonder if my kids ever wanted to donate if they would be rejected on the basis of a strong family history of renal failure? There were no genetics involved in my renal failure. Yes, genetics are clearly involved in type II diabetes to some extent, yet some cases are easily controlled and don't lead to kidney failure. I guess it depends on what the doctors saw. My donor that I referred to is the one from 1976, and there is no family history and no way to predict what was going to happen 34 years later. I strongly believe that if he does develop diabetes, he would have developed it anyway, and if it destroys his one kidney, it would have destroyed both, though it would have taken a bit longer. This is the same person who donated bone marrow to a stranger in the 1990s, so he has passed two separate evals. He will do what he has to do and follow a doctor's advice to the letter.

Gwyn was labeled with highish blood pressure, but he fought that label, and our GP backed him up. The cut off for high blood pressure has been reduced significantly over the years, as has the cut off for overweight and obese. I think there's got to be a line between standards and paranoia, but I'm not saying that in the case of dyann's daughter that they are wrong to consider declining her. I obviously don't have the full story nor the professional medical knowledge, and their job is to consider everything. I absolutely want potential donors who are in any sort of medical danger to be declined, I just think this may be an overreach.

I could answer your questions for myself easily: No, in cases where there is clear medical risk, the donor should not be able to override the committee based on desire. The same would be true for any patient - transplant hopefuls are declined all the time for medical reasons. Where I have a problem, and this goes to your second question, is with a transplant team using totally unscientific biases to make these decisions for a donor. It's more dangerous to donate with a BMI over 35? From where are we drawing this conclusion? People with any mental illness, former drug addiction, traumatic pasts should not donate because a social worker spent an hour talking to them? Ever read your eval report? They are one quarter fiction! These people cannot even listen, they should have no authority to pass judgment on something as subjective as a person's psychological state.

I like your "strong recommendation" idea for borderline cases.

[dyann]

thank you  first as far as the getting pregnant  no one told me it was hard to get pregnant  however it is hard to carry a baby when you only have one kidney  I know  this first hand as my 3rd child was very difficult to carry and the Dr watched me very closely due to my one kidney  it was a hard pregnancy and Icarried a lot of fluid which put strain on me and my heart 30 lbs to be exact that is howmuch they were taking off me when I delivered and I deleivered a month early and Amanda had kidney issues at first but no more.
As far as stronghistory of diabetes  my fathers side of the family all brothers and sister have type 2 diabetes they turned 40 and they developed it  all insulin dependant  I take insulin and became a diabetic at age 41  my brother is a diabetic but takes medication oral.  my 2 sisters have not been dx yet. my Mother's side of the family not one person is a diabetic  just my dads   I want my daughter to behealthy as she gets oler it is just so hard to hear her get mad at possiblynot being ale to do it  thats all  thank you all for your comments  I will let you all know when and if it can or cannot happen

[cariad]

Oh, Dyann, sounds like they really weren't overstating the family history component. If I were in your position, I could not allow my daughter to risk it. I can only imagine how hard this situation is for you. I hope something works out for you.

Wow, you had a rough time with your pregnancy. I had two kids with one (transplanted) kidney and no troubles. My transplant center says that they have had many donors go on to have uneventful pregnancies and healthy children. I'm sorry you went through that and can see why you want to prepare any potential donor for the possibility.

Good luck with everything.

[RichardMEL]

Remember that these transplant decisions are made by a comittee of specialists that come to a consensus so it's not just one person saying yay or nay, and the group comes to a decision based on experience and understanding of the picture with obviously a directive to always err on the side of caution when it comes to a healthy donor. At least in the case of my sister I was confident that it wasn't just one doctor's negative opinion (she saw one neph for a second opinion as part of the donation tests and he was apparently quite negative towards her) - the voices of the main neph, psych, transplant specialists etc are all taken into account and I'm sure it's not an easy decision to come to - given they hold people's hopes and dreams in their hands.

I had a nurse once tell me she read my file with the findings of the transplant comittee in it regarding my sister (I am not sure if that is a privacy violation or not, given it's my file... but anyway) and she said that it was well documented and the decision was backed up approprlately and she could see from the notes why they made their decision. Does that give me comfort? yeah it does. It's not like they tossed a coin or something.

[dyann]

Thank you all it givesme a better understanding of what I need to say to my daughter