Why doesn't Missouri and Kansas accept live liver donors

Posted by cperry6 @cperry6, Dec 17, 2019

Hi, My friend needed a liver transplant. She lived in Missouri but went to KU Medical Center. KU Med Center doesn't accept live liver donors. It is my understanding that the entire state of Missouri and Kansas doesn't accept live liver donors. Can someone tell me if this is correct? Does this hold true for the entire Region 8 states? And, where are these rules/policies set? By state law? Board of Directors? My friend was at the top of the liver transplant list but a liver never came. I am hoping someone can give me some information so I can try to get this changed. Thank you in advance. cjp

Very difficult California has a long long list. My HMO had me set up for living donor through UCSF. It was a long and treatrous journey
My lung collasped surgery aborted. Next after this failed attempt i was sent to Florida.
California laws are very strict
MAYO Clinic took over still took another year to complete testing.
I then received a new/slightly used liver. So good luck.

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I would say maybe talk to Mayo either in Rochester Minn or Phoenix Az. I know they do living donors and from what ive heard Az seems to get organs faster than other states partially due to travel distance and availability compared to back east.

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@cperry6 Welcome to Mayo connect. Your friend is lucky to have you in their corner, helping to advocate for them. While I couldn't find information directly, here is the website for UNOS [United Network for Organ Sharing]. There is a contact number for you or your friend to reach out to them for more information.
https://unos.org/community/regions/
Please let us know what you find out?
Ginger

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@gingerw

@cperry6 Welcome to Mayo connect. Your friend is lucky to have you in their corner, helping to advocate for them. While I couldn't find information directly, here is the website for UNOS [United Network for Organ Sharing]. There is a contact number for you or your friend to reach out to them for more information.
https://unos.org/community/regions/
Please let us know what you find out?
Ginger

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I spoke with a doctor at KU Med. The explanation is that it is not by state. But, by individual hospital. It is just that the hospitals in Missouri and Kansas don't accept live liver donors because of the risks to the donor. There is a higher risk of complications for the donor of a liver than to a live kidney donor. Most donors for a liver would be from a family member or best friend. And, most times the patient wouldn't want that person to take the risk. So, I guess that is the answer to my question. I was advised that Nebraska and Colorado in Region 8 do live liver donor. As well as Mayo clinic. However, there is a redistricting push in process which if done would make it harder for the patients in Region 8. I hope the redistricting doesn't take place. Thank you.

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@cperry6

I spoke with a doctor at KU Med. The explanation is that it is not by state. But, by individual hospital. It is just that the hospitals in Missouri and Kansas don't accept live liver donors because of the risks to the donor. There is a higher risk of complications for the donor of a liver than to a live kidney donor. Most donors for a liver would be from a family member or best friend. And, most times the patient wouldn't want that person to take the risk. So, I guess that is the answer to my question. I was advised that Nebraska and Colorado in Region 8 do live liver donor. As well as Mayo clinic. However, there is a redistricting push in process which if done would make it harder for the patients in Region 8. I hope the redistricting doesn't take place. Thank you.

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@cperry6 That is interesting information to find out, isn't it? My experience has been with kidney transplants. Transplant centers want optimum patient success and outcome, so they are fairly strict who they accept for transplant [no addicts/less-than-stellar lifestyle, medicine compliant, etc.]. Will your friend look in to possible transplant in another area, now?
Ginger

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@gingerw

@cperry6 That is interesting information to find out, isn't it? My experience has been with kidney transplants. Transplant centers want optimum patient success and outcome, so they are fairly strict who they accept for transplant [no addicts/less-than-stellar lifestyle, medicine compliant, etc.]. Will your friend look in to possible transplant in another area, now?
Ginger

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My friend passed away last Sunday as a liver didn't come available in time for her.

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@cperry6

My friend passed away last Sunday as a liver didn't come available in time for her.

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@cperry6, I am really sad that your friend passed because a liver wasn't available for her. Please accept my condolences.
Rosemary

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I am so sorry that your friend passed because a liver was not available. My thought's and prayers are with you.

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@cperry6

My friend passed away last Sunday as a liver didn't come available in time for her.

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@cperry6 Oh, dear, I am so sorry to hear this. I hope you will consider looking into our discussions on grief, under the group titled "Loss and Grief" if you feel so inclined. Please tell me a favorite memory you have, of your friend.
Ginger

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I am so sorry, Prayers for all involved

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@cperry6 I am very sorry to hear that your friend passed away. We never expect that of course and when it happens it's such a shock. I knew a woman last year who also did not make it to transplant. She went to a local hospital and they did not have her transported to the transplant hospital. I have always wondered if that might have made a difference because at one point I was very sick but was sent by ambulance to MGH, my transplant hospital (my husband pretty much insisted that the local hospital do that and they were quite happy to oblige and get me out of there). I was told locally that I was close to having a cardiac arrest due to how low my hemoglobin and hematocrit numbers were.
For info for anyone wondering about this though, the SRTR.org site lists all the hospitals that do transplants, by organ. It tells how many live donor transplants each hospital has done also. MGH does some live donor transplants but I have noticed that Lahey Clinic in Burlington (MA) does quite a few. Also, I believe it's the University of Pittsburg that is really big on live donors, they do more than anywhere else in the country.
JK

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