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How does this work? Is it possible to move and get on a different waitlist? It's hard for me to see why they would setup region-by-region waitlists. Fingers cro

by ummonk 6y ago

How does this work? Is it possible to move and get on a different waitlist? It's hard for me to see why they would setup region-by-region waitlists. Fingers crossed for you.

joncrane 6y ago
This is my question, too. Surely there are flexible people who move to the area with the shortest waitlist.
- pkaye 6y ago
  Yes like I mentioned in other reply, you can move regions and carry your wait list time. But many people are tied by job and family. Also insurance plans sometimes have preferred hospitals. As for why I haven't tried a shorter wait region, I consider transplant as not a cure. It will eventually fail. And there are other things in progress like the UCSF artifical kidney, gene therapy research, better anti-rejection drugs. My hope is when my transplant does fail, one of these alternatives are further along. So I look at each of these things as stepping stones to extend my life.
- netsharc 6y ago
  Steve Jobs listed himself in multiple areas and could just private jet to the first available organ (I can't remember what organ he needed)
pkaye 6y ago
This is for US but you can get on multiple lists at the same time. However you have to be able to travel to that center on a short notice. And there might be false calls where things don't work out. So most people can't list beyond the local and adjacent regions within a few hours of driving distance. However you can switch regions and carry your wait time credit over. As for why the region-by-region setup probably because its a big country and patients can't travel from one side to another. Also its difficult to change because any change results is someone having increased wait time. And some of the states don't like to share their organ streams with others. The reality is those states with larger organ pool is because more people die there for whatever reason. I've also been told that only a small percent of deaths result in viable organs for donation. I think like 2 out of 1000 is what a transplant coordinator told me.
- himynameis12345 6y ago
  A lot of the reason for the region by region waitlist is what you said, to make sure you are capable to get into the hospital within a certain amount of time to receive the organ. The other part is that it takes time to physically move an organ from the deceased to the transplanting hospital. Time is the key here, the more time the organ is not in a living body, the less likely it is to survive transplantation. So if we didn't have regions, and you were living in San Fransisco and a kidney came from a dead biker in Florida, the likelihood of the kidney surviving is less than if that kidney came from Sacramento.
- walshemj 6y ago
  When I was waiting at the royal free (UK) , one of the doctors doing my bloods for compatibility - mentioned they had people fly down from Aberdeen. And not all of a donors kidneys are ok two of us got called and only one kidney was viable.
CapriciousCptl 6y ago
Steve Jobs was in the same boat and got "multi-listed"-- https://abcnews.go.com/Health/Economy/story?id=7902416&page=1 https://abcnews.go.com/Health/Economy/story?id=7902416&page=... The short answer is you technically can but the ethics are foggy. On the one hand you do help even out the geographical disparity. But you're kind of buying an organ that would have gone to someone else who's probably poorer than you.

by ummonk 6y ago

How does this work? Is it possible to move and get on a different waitlist? It's hard for me to see why they would setup region-by-region waitlists. Fingers crossed for you.

joncrane 6y ago

This is my question, too. Surely there are flexible people who move to the area with the shortest waitlist.

pkaye 6y ago
Yes like I mentioned in other reply, you can move regions and carry your wait list time. But many people are tied by job and family. Also insurance plans sometimes have preferred hospitals. As for why I haven't tried a shorter wait region, I consider transplant as not a cure. It will eventually fail. And there are other things in progress like the UCSF artifical kidney, gene therapy research, better anti-rejection drugs. My hope is when my transplant does fail, one of these alternatives are further along. So I look at each of these things as stepping stones to extend my life.
netsharc 6y ago
Steve Jobs listed himself in multiple areas and could just private jet to the first available organ (I can't remember what organ he needed)

pkaye 6y ago

This is for US but you can get on multiple lists at the same time. However you have to be able to travel to that center on a short notice. And there might be false calls where things don't work out. So most people can't list beyond the local and adjacent regions within a few hours of driving distance. However you can switch regions and carry your wait time credit over. As for why the region-by-region setup probably because its a big country and patients can't travel from one side to another. Also its difficult to change because any change results is someone having increased wait time. And some of the states don't like to share their organ streams with others. The reality is those states with larger organ pool is because more people die there for whatever reason. I've also been told that only a small percent of deaths result in viable organs for donation. I think like 2 out of 1000 is what a transplant coordinator told me.

himynameis12345 6y ago
A lot of the reason for the region by region waitlist is what you said, to make sure you are capable to get into the hospital within a certain amount of time to receive the organ. The other part is that it takes time to physically move an organ from the deceased to the transplanting hospital. Time is the key here, the more time the organ is not in a living body, the less likely it is to survive transplantation. So if we didn't have regions, and you were living in San Fransisco and a kidney came from a dead biker in Florida, the likelihood of the kidney surviving is less than if that kidney came from Sacramento.
walshemj 6y ago
When I was waiting at the royal free (UK) , one of the doctors doing my bloods for compatibility - mentioned they had people fly down from Aberdeen. And not all of a donors kidneys are ok two of us got called and only one kidney was viable.

CapriciousCptl 6y ago

Steve Jobs was in the same boat and got "multi-listed"-- https://abcnews.go.com/Health/Economy/story?id=7902416&page=1 https://abcnews.go.com/Health/Economy/story?id=7902416&page=... The short answer is you technically can but the ethics are foggy. On the one hand you do help even out the geographical disparity. But you're kind of buying an organ that would have gone to someone else who's probably poorer than you.