Kidney Transplants

  • Posted by a hidden member.
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    Jul 28, 2010 7:23 AM GMT
    Any idea what region in the country has the shortest wait for kidney transplants? For a family member who has already waited 7 years, got in trouble and was taken off their current list (missed and did not return a call).

    Would appreciate doctor/attorney help/suggestions/information. Is this possible? Could they not have been contacted at the dialysis center? Can give more details as required. Thanks.

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    Jul 28, 2010 12:08 PM GMT
    I recommend finding a donor independently.

    A kidney is something you can donate at any time. It takes a few tests to see if the donor is a match, but after that it is pretty much 1. 2. 3. My mom actually donated to my grandfather. Now sadly it looks like one of us might need to give some up for her in the next few years.
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    Jul 28, 2010 12:55 PM GMT
    Thank you Daniel. We have tried the family, the one possible match, a sibling, feels very odd about the transplant and is reluctant. Very sad because at first a lot of interest was expressed. This was a big disappointment.

    Hey Daniel, again, thank you for taking the time to respond. This is very tough for me as we are very close (they have been closer than a brother, no not my lover). Hit me hard yesterday when I found out. Simply beside myself.

    Good luck to your mother.
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    Jul 28, 2010 2:44 PM GMT

    I'm very sorry to hear about your ill family member. My thoughts are with you.

    My family was recently introduced to the details of donor organ waiting lists when my sister's 47 year old brother in law suffered acute liver failure. As with kidneys a living donor transplant is possible when it comes to livers. However we also looked into the possibility of a liver donated postmortem.

    We live outside of Boston, which is a major center for transplants. That actually put us at a disadvantage as the ratio of patients waiting for organs relative to donors tends to be high near major transplant centers. As you may know, the country is divided into regions for organ matching. Patients are usually encouraged to register in the region that they live in because if an organ match comes up there is little time to get to the transplant center for the surgery. Some people (e.g. Steve Jobs) have the means to be able to get anywhere quickly and so are able to register in multiple regions, which improves the odds of a match.

    I don't know the details of which regions hold out the best odds of a relatively quick match. But I would think you could get a lead from a transplant message board etc. One other possibility - albeit somewhat ethically fraught - would be to consider an overseas transplant. A number of countries have booming 'medical tourism' industries and kidney transplants are offered by many. There are even instances of US insurers footing the bill for their US clients to travel overseas for transplants since the cost of the surgery tends to be lower oversea and in many cases the cost of a transplant and aftercare is lower than that of managing the illnesses caused by failing organs. (I'm not sure how that math works for kidneys as my understanding is that the US government picks up most of the cost of dialysis.)

    In the case of my sister's brother in law, he did not recover sufficiently from the initial liver failure to become a serious candidate for a transplant and died after eight weeks.

    The official source in the US for donor organ information is http://www.organdonor.gov and the organization that matches donors and recipients is the United Network for Organ Sharing (UNOS) http://www.unos.org

    I wish you and your family all the best. Please keep us posted.

  • iamhman

    Posts: 24

    Jul 28, 2010 4:19 PM GMT
    This is an area where I have over 25 years of experience.
    Without knowing more details, it is hard to give a complete answer.
    One major question, is your relative highly sensitized and is this the
    reason for the long wait? In any case, this relative should seek to be relisted
    in their local organ sharing region. They might also seek to be listed in an adjacent region especially if it is not too far away.
    For example, people in western Michigan and Indiana like to also be listed at a transplant center in Chicago which is a separate organ-sharing region.
    It's difficult to be listed too far from home because you generally have to get to the transplant center quickly if and when a kidney become available.
    If your relative is sensitized, there are protocals which are different at each transplant center. They can be cumbersome and have variable rates of success. These are often experimental protocals and the cost can be covered by the reseach protocal. I have had patients get kidneys from distant relatives, casual acquaintances and one patient actually did find a donor on an web-site for altruistic people who simply are willing to give kidneys. In each of these cases, the medical pesonnel (including me) were a bit skeptical and the process moved slowly. In each case however, the result was very positive. Finally your relative needs to be compliant with his/her medical regimen. Medical personnel are not going to go the extra mile for a patient who is non-compliant. In my area, the transplant center would often contact the patient directly or sometimes ask me and my staff to do it. Certainly they would call us locally if they could not find the patient quickly
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    Jul 28, 2010 5:40 PM GMT
    iamHman saidThis is an area where I have over 25 years of experience.
    Without knowing more details, it is hard to give a complete answer.
    One major question, is your relative highly sensitized and is this the
    reason for the long wait? In any case, this relative should seek to be relisted
    in their local organ sharing region. They might also seek to be listed in an adjacent region especially if it is not too far away.
    For example, people in western Michigan and Indiana like to also be listed at a transplant center in Chicago which is a separate organ-sharing region.
    It's difficult to be listed too far from home because you generally have to get to the transplant center quickly if and when a kidney become available.
    If your relative is sensitized, there are protocals which are different at each transplant center. They can be cumbersome and have variable rates of success. These are often experimental protocals and the cost can be covered by the reseach protocal. I have had patients get kidneys from distant relatives, casual acquaintances and one patient actually did find a donor on an web-site for altruistic people who simply are willing to give kidneys. In each of these cases, the medical pesonnel (including me) were a bit skeptical and the process moved slowly. In each case however, the result was very positive. Finally your relative needs to be compliant with his/her medical regimen. Medical personnel are not going to go the extra mile for a patient who is non-compliant. In my area, the transplant center would often contact the patient directly or sometimes ask me and my staff to do it. Certainly they would call us locally if they could not find the patient quickly


    Thank you. I will email you as there is some personal information to share, and I am trying to respect confidentiality.
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    Jul 28, 2010 5:43 PM GMT
    flieslikeabeagle said
    I'm very sorry to hear about your ill family member. My thoughts are with you.

    My family was recently introduced to the details of donor organ waiting lists when my sister's 47 year old brother in law suffered acute liver failure. As with kidneys a living donor transplant is possible when it comes to livers. However we also looked into the possibility of a liver donated postmortem.

    We live outside of Boston, which is a major center for transplants. That actually put us at a disadvantage as the ratio of patients waiting for organs relative to donors tends to be high near major transplant centers. As you may know, the country is divided into regions for organ matching. Patients are usually encouraged to register in the region that they live in because if an organ match comes up there is little time to get to the transplant center for the surgery. Some people (e.g. Steve Jobs) have the means to be able to get anywhere quickly and so are able to register in multiple regions, which improves the odds of a match.

    I don't know the details of which regions hold out the best odds of a relatively quick match. But I would think you could get a lead from a transplant message board etc. One other possibility - albeit somewhat ethically fraught - would be to consider an overseas transplant. A number of countries have booming 'medical tourism' industries and kidney transplants are offered by many. There are even instances of US insurers footing the bill for their US clients to travel overseas for transplants since the cost of the surgery tends to be lower oversea and in many cases the cost of a transplant and aftercare is lower than that of managing the illnesses caused by failing organs. (I'm not sure how that math works for kidneys as my understanding is that the US government picks up most of the cost of dialysis.)

    In the case of my sister's brother in law, he did not recover sufficiently from the initial liver failure to become a serious candidate for a transplant and died after eight weeks.



    Thank you for your thoughtful reply. I will contact these websites.

    I am saddened to hear about the death of you sister's brother-in-law. Please accept my condolences.




    The official source in the US for donor organ information is http://www.organdonor.gov and the organization that matches donors and recipients is the United Network for Organ Sharing (UNOS) http://www.unos.org

    I wish you and your family all the best. Please keep us posted.

  • Posted by a hidden member.
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    Jul 28, 2010 5:57 PM GMT
    I've been waiting almost 4 years in the Philly/South NJ area and I was told I might have to wait another 3 (And I'm 22 and completely healthy otherwise).

    You probably already know this but you can sign up with multiple hospitals as long as they don't cover the same "region"
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    Aug 02, 2010 7:42 AM GMT
    Sorry I did not get back to you sooner. I was out of town. No, I did not know that you could sign up at more than one place. Thank you for that information. Good luck with your transplant. All the best to you. MD