I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: George Jung on November 18, 2007, 08:27:59 PM
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A couple of questions...
So my mother who is a match has been denied as a donor. She told me the reason being is that it is hospital policy not to accept donors who have had a traumatic experience in their life. It is their experience that these people have difficulty recovering. What is the truth behind this? Is that a nice way of saying something else and letting her down easy? Is it worth trying another hospital?
Please, no sympathy responses, I am simply curious to know if there is a possibility here or not. Thanks.
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I would try another transplant center if your mom is open to it.
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What do they class as a traumatic experience? I would ask what the medical reason is. Then I would look further into this George. Call and talk to the transplant unit yourself. If you still get airy fairy answers I would try another hospital.
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That's a new one for me. It sounds odd but then again, just about every psychological evaluation is always a question in my mind - it's not an exact science. It could be the real deal or it could be a way of allowing her to back out gracefully. The truth is you will never know for sure, but if it were me, and your mom is still an enthusiastic participant, I would go to another transplant hospital. I know donors on livingdonorsonline.org that have donated even if they had a history of depression, which you would think might rule someone out. Do you have another donor to bring forward?
:cuddle;
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I know a donor who had, in the previous few years prior to donating, suffered from post traumatic stress disorder. It didn't prevent him from donating, and he didn't have a recurrence of the disorder after the surgery either. Just one example.
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Beth was evaluated as a donor at the same center. She was asked at the psychological evaluation if she ever had a traumatic experience that she had trouble getting over. She hadn't told me this until today while reading this post. Also, the co-ordinator for the donor won't release any personal information - they need to protect the potential donors. It may not disqualify everyone, but donors go through evaluations for good reasons. Maybe more was uncovered than she is willing to share. And this could be her "out". They are always allowed to back out without giving specific reasons.
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One book on medical ethics I read discussed what should be done if a potential donor is checked for his medical suitability to donate to a close friend or relative, but tells the doctor privately that he simply does not want to donate and wishes he had some medical excuse to escape the emotional pressure to donate. The book said that the standard answer in medical ethics is that the physician should become an accomplice in this lie, telling the potential recipient and the family that there was some medical reason why the donation could not take place.
Transplant centers love to play God, and they can only enjoy the full force of their power if they exercise it unreasonably. One way they do this is by establishing subjective and arbitrary criteria for rejecting potential donors, and the fact that someone has had a traumatic experience in his life before which was difficult to get over is just such an absurd reason for denying his donor candidacy. First, since there is no trauma exactly like that of donating a kidney, any inference from the difficulty of dealing with the former trauma to the latter is just pure speculation. Second, my live donor left the hospital four days after the transplant sitting in the trailer of a pick-up truck having no springs, travelling over bumpy roads to his home, so I fail to see how traumatic the donation experience is. Third, since the emotional and physical trauma of getting over having donated a kidney is about one one-millionth as great as the physical suffering, danger, and emotional toll of living on dialysis, any hospital that turns down on donor on these grounds has a very poor sense of triage.
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So IF I were to decide to pursue this further, give it another shot, and try another hospital, what is recommended? How do I decide which hospital? I don't want to beat a dead horse here but it seems like there is still a possibility?
I would try another transplant center if your mom is open to it.
My mom would spend the rest of her life looking for a hospital to do it.
Do you have another donor to bring forward?
My Uncle (mom's brother) is plan B, but I am not sure where he is at in the process. He has just mentioned to me casually that I have him as a back-up.
What do they class as a traumatic experience?
She has lost loved ones (a husband and a son)? She told me that they said it was their policy not to accept donors who have a history of a traumatic experience(?).
I am not even listed yet, I meet with the social worker and transplant surgeon on Dec 3rd. Maybe I will inquire then?
What I need to decide is if there is anything I should do, or if it is a dead issue.
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You could talk to someone at Duke or Carolina Medical Center. They are both good transplant centers. I am not sure how much influence you have over any decisions now. Donor information is private, for obvious reasons, so I am not sure what can be shared with you. I was told that at any time, a potential donor could change their mind and I would be told there were medical reasons that made the person ineligible.
I found it was easier to get listed at the second center after being listed at UNC. Get through your meetings/ tests and go from there. Can you call your co-ordinator and see if she can give you any insight? Hang in there.
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George,
When Jenna was first in the process of being listed I told the team I wanted to donate. (This is before we knew I didn't match.) The social worker spent a lot of time talking to me about her concerns. One was that it's a very emotional thing, to donate to a child, and that I shouldn't let emotions rule my decision. (Aren't all our decisions regarding family ruled by emotions?) The second thing was how hard it would be for the rest of my family, with both of us going through surgery. Then she asked who would take care of Jenna, since I would be laid up too, and my husband is disabled. I said I would hire someone, if needed. My point is that all along the way the social worker was trying to gauge my commitment, my emotional stability, and whether or not I was making this decision for the right reasons, not out of guilt or coercion or pressure from other family members. It was as if she was trying to talk me out of it. I held firm and they were satisfied.
If you were to pursue this with the hospital that she was denied, it would have to be your mom who asks for a clarification about who made the decision. She would ask: Was your case brought up before a committee or was it a team member who decided? Would they be willing to reconsider? It may or may not make any difference, but if she feels strongly and asks to be reconsidered, they should cooperate. Or they will refuse, and then you know to move on with a new center or a new donor.
Once you are listed it is easier to go to other centers, so if it were me I would get that listing completed as soon as possible. Ask them what they are missing, if anything, to complete your file. Some centers only meet once a month or every 2 weeks to go over their cases - ask them when you can expect to hear. If they don't know then you should look for another center anyway, in my opinion.
To find another center, after you are listed at one, you need to go outside your procurement area. You can only be listed at one hospital in your procurement area (but you can move to another center.) I asked the dialysis social worker and also looked at the OPTN Statistics for other centers to decide where to multiple list. I can help you with this if you need me to.
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Crap. My potential donor fought in Vietnam. I hope this doesn't cause a problem!
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I don't like the whole official attitude of the medical profession to kidney transplants, which is that they should hunt for every possible reason not to perform the transplant and to find even the slimmest excuse to reject the potential donor. People can volunteer at 18 to get themselves killed or maimed in military service; people are free to marry someone with whom they will form a soul-destroying partnership; people can make ludicrously risky investments or bad contracts up to the point of legal unconscionability -- and in all these aspects of life, no one interferes, but just lets the person put his head in the noose if he wants to. So why be so fussy about obtaining the 'genuine' consent of the transplant donor? The world becomes a better place every time it takes a set of two people, one with two kidneys and the other with none, and distributes the kidneys equally between them, since the total amount of human health in the world increases just by shuffling the existing body parts around. So why hunt for reasons not to do this? So what if the potential donor is under moral pressure from the family or the potential recipient to do what is morally right and make the donation? Many people are under many types of pressure when they make a choice, but that is not construed to invalidate their free will in making their commitment.
For many years in France it was illegal for any live kidney donor to be a relative of the potential recipient, since it was deemed to be an involuntary donation because of likely family pressure to give up the extra kidney. Then a decade later it became almost universal policy that it was illegal for anyone to be a donor who was NOT a relative of the recipient, because otherwise it was deemed that some monetary inducement was operative. The fact of these contradictory policies just shows that, when it comes to kidney transplants, the healthy majority just loves playing God with the poor helpless sick people who come under their control. They don't care about why they invent new and contradictory grounds of denial for donation all the time, they just enjoy being able to play with sick people's hopes the way a cat plays with a mouse before it kills it.
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I was just thinking how first impressions impact people. Whoever was interviewing George's Mom and made these decisions. How much can you learn about someone's personality with an interview. I cried at my eval. It is a wonder they didn't stamp my records "looney" and not put me on the list. I read somewhere that just the act of a baby coming down the birth canal is a traumatic experience. Don't we all have our trials and tribulations we have survived.
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As someone else said, evaluation of a persons emotions is not a science. There is no crystal ball to see how a person will handle a 'future' event such as the time after donating an organ. The only thing they have to go by is statistics of previous live donations and I doubt there have been enough cases of donor emotional meltdowns, if any, to warrant the denial of this mother to give the gift of life a second time to her son.
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Now that I am listed at UNC I will be going to another hospital (probably Carolina Medical Center) to get multiple listed. My mom says she still wants to donate so I think that this is a good next step. She can go through another transplant team who may view things a bit differently and we shall see what happens. My Uncle (the outstanding guy that he is) has also made it clear to me that he has spoken with my donor coordinator at UNC (about being a donor). He does not think that he is a blood match so he is talking paired donations. I am at such a loss for words to describe my thoughts and feelings about people being willing to give so much for me.
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You are worth it! :2thumbsup; Kudos to your family for stepping up!
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Sometimes you find out just how much people care about you when you go through this. I have 2 nephews in the service that both offered to donate. I would not have expected that kind of a reaction from them. I had causual aquaintances offer as well. Such unselfish acts take my breath away.
George you are a great guy. Even though I never met you, your posts show how awesome you are. I am not surprsed they want to donate to you.
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Crap. My potential donor fought in Vietnam. I hope this doesn't cause a problem!
I'm sorry, Paddbear0000, but that made me laugh. That would be just my luck, as well! :) Good Luck!
But my question to George's post is - haven't most people gone through some sort of traumatic experience some time in their life? Birth, for instance. That's pretty traumatic.
Surely everyone has lost someone close to them by the time they are old enough to donate - a friend, a grandparent, parent, etc.
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George, didn't you say at some point that you & your mom have issues with your relationship? Maybe these issues came out very negatively in your mom's psych evaluation and they're calling this the "tramatic event?"
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Maybe these issues came out very negatively in your mom's psych evaluation and they're calling this the "tramatic event?"
Maybe