Waiting for an altruistic donor

Posted by morty @morty, Thu, Feb 14 3:50pm

I’m curious how many people out there are waiting for a kidney transplant at Mayo Phoenix.

Hi @morty, welcome to Connect. I'd like to connect with with others like @rosemarya @nianyi @elevinton @judyth @marvinjsturing @jolinda @dshaver and @gaybinator who have kidney transplant experiences they may be able to share.

– Recipient Toolkit on the Transplant Pages is an excellent resource that can provide you with some additional information.
https://connect.mayoclinic.org/page/transplant/tab/resource-35/
Are you currently on the wait list at Mayo Clinic in Arizona?

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I am on the waiting list at Mayo Rochester. I am on the inactive list until I am cancer free for 5 years. If things go well, I will be put on the active list in June. There are 2 people who have offered to be donors, but need to be tested to see is they are a match.

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@colleenyoung

Hi @morty, welcome to Connect. I'd like to connect with with others like @rosemarya @nianyi @elevinton @judyth @marvinjsturing @jolinda @dshaver and @gaybinator who have kidney transplant experiences they may be able to share.

– Recipient Toolkit on the Transplant Pages is an excellent resource that can provide you with some additional information.
https://connect.mayoclinic.org/page/transplant/tab/resource-35/
Are you currently on the wait list at Mayo Clinic in Arizona?

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@colleenyoung

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Yes, I am on the waiting list for Mayo in Phoenix. Really like the staff there on the recipient side. I have concerns since there can be no communication with the donor side, what is happening. My question was to find out how many patients are waiting for a kidney transplant, now.

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@morty

Yes, I am on the waiting list for Mayo in Phoenix. Really like the staff there on the recipient side. I have concerns since there can be no communication with the donor side, what is happening. My question was to find out how many patients are waiting for a kidney transplant, now.

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UNOS is your friend. Google it and drill down in the data to get your answer.

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@morty

Your transplant coordinator can answer your question and will likely have the most up-to-date stats. That being said it isn't quite as simple as that (what in the transplant world is) so many things come in to play like antibodies, blood type, donor body size etc. so things get a little complicated.

I had my kidney transplant at Mayo in Rochester by the time I qualified for the list my function was dropping so quickly I would have been on dialysis before my turn came up. I was terrified, I felt unworthy, I prepared for the worst and eventually I got around to the difficult task of telling people I was sick and needed a kidney, for me it got easier the more I did it. After a meeting at work one day I told a co-worker (who I was not close to at all) and she offered me a kidney on the spot. Six weeks to the day later we were in surgery and I've been healthy ever since. Anyting is possible, be bold!

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@jolinda

@morty

Your transplant coordinator can answer your question and will likely have the most up-to-date stats. That being said it isn't quite as simple as that (what in the transplant world is) so many things come in to play like antibodies, blood type, donor body size etc. so things get a little complicated.

I had my kidney transplant at Mayo in Rochester by the time I qualified for the list my function was dropping so quickly I would have been on dialysis before my turn came up. I was terrified, I felt unworthy, I prepared for the worst and eventually I got around to the difficult task of telling people I was sick and needed a kidney, for me it got easier the more I did it. After a meeting at work one day I told a co-worker (who I was not close to at all) and she offered me a kidney on the spot. Six weeks to the day later we were in surgery and I've been healthy ever since. Anyting is possible, be bold!

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I have been bold. I have posted on social media and made flyers.
They have been “talking” to a person of interest since November. I have two back ups. It’s taking so long that I was wondering what the hold up is. That is why I was wondering how many others are waiting.

I would hope if there isn’t movement on the one at hand, they would continue to the next on the list.

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@morty

I have been bold. I have posted on social media and made flyers.
They have been “talking” to a person of interest since November. I have two back ups. It’s taking so long that I was wondering what the hold up is. That is why I was wondering how many others are waiting.

I would hope if there isn’t movement on the one at hand, they would continue to the next on the list.

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@morty
Great job being proactive!!! Sounds like you've really set yourself up for success.

I know it's hard but you have to trust the process. Your transplant center wants the best outcome for you and your donor. Maybe they found a great match for you and something needs to be retested in that person? Maybe you are being considered for part of a chain to find you an even better match, who knows? I realize it is tough waiting…been there, done that, living happily ever after. The best possible thing you can do right now is stay as healthy as possible by resting, avoiding germs that could alter your blood and most of all not stressing out. It helped me to pray for my unknown donor during my wait.

You sound like an incredibly strong and proactive pateint which will serve you well post transplant. Wishing all of the best.

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As of February 14th, there are 884 people on the waiting list at PHX Mayo.

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@morty

I have been bold. I have posted on social media and made flyers.
They have been “talking” to a person of interest since November. I have two back ups. It’s taking so long that I was wondering what the hold up is. That is why I was wondering how many others are waiting.

I would hope if there isn’t movement on the one at hand, they would continue to the next on the list.

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@morty, I don't know if you have seen this information. I want to pass it along to you from the Mayo Connect Transplant Page. You can view a recipient tool kit and a living donor tool kit.
https://connect.mayoclinic.org/page/transplant/
Here is a newsfeed article that might be helpful, too. – Nondirect Donor Q&A with Kay Kosberg, R.N., C.C.T.C.
https://connect.mayoclinic.org/page/transplant/newsfeed/nondirect-donor-qa-with-kay-kosberg-r-n-c-c-t-c/

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Hi @morty, There are multiple variables at play when it comes to your spot on the wait list. The best approach might be to contact your transplant nurse coordinator who can provide the most up to date stats. What we can advise of is the transplant rate for Mayo Clinic in Phoenix, as reported by the Scientific Registry of Transplant Recipients (SRTR) https://www.srtr.org/, which is a measure of how frequently patients on a program’s waiting list undergo transplant.

The adult transplant rate Mayo Clinic in Phoenix is 33.3 which is favorable compared to the OPO/DSA rate of 31.2 and the national rate of 18.8.

Programs with higher transplant rates tend to perform transplants more frequently than programs with lower transplant rates. The transplant rate is given as a number of transplants per 100 patients listed per year. So a value of 33.3 means for every 100 patients listed for one year in the kidney program, 33.3 would be transplanted.

Liked by cehunt57

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@jolinda

@morty

Your transplant coordinator can answer your question and will likely have the most up-to-date stats. That being said it isn't quite as simple as that (what in the transplant world is) so many things come in to play like antibodies, blood type, donor body size etc. so things get a little complicated.

I had my kidney transplant at Mayo in Rochester by the time I qualified for the list my function was dropping so quickly I would have been on dialysis before my turn came up. I was terrified, I felt unworthy, I prepared for the worst and eventually I got around to the difficult task of telling people I was sick and needed a kidney, for me it got easier the more I did it. After a meeting at work one day I told a co-worker (who I was not close to at all) and she offered me a kidney on the spot. Six weeks to the day later we were in surgery and I've been healthy ever since. Anyting is possible, be bold!

Jump to this post

@jolinda

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@mickj

As of February 14th, there are 884 people on the waiting list at PHX Mayo.

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@mickj This is for a deceased donor? How many on the list that bring a living donor to the table?

Liked by cehunt57

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