Confused Recipient

Posted by morty @morty, Sep 3, 2019

I’m awaiting a transplant. I have people that have offered to donate. I called my team to find out what is happening. They asked the donor team if they have someone they are testing. I was told, “Not at this time.”
At the same time, a potential donor for me called the donor team and was told they are speaking to a woman at this time.
Why different answers? Why can’t I find out about the progress of finding me a donor? This is very frustrating. I understand there are privacy laws, can’t I just be given updates? Why can’t the team let me know my status, how many are on the list, etc?
I’m hoping to get a transplant before I need to start dialysis which will be by the end of this year according to my nephrologist.

Thank you for your input.
Susan

Interested in more discussions like this? Go to the Transplants group.

@marvinjsturing

@hopeful33250 Teresa, I really don't have have questions at this time. I have read a lot about the donor and recipient process. When I asked for donors, I had 2 people talk to me. Neither one qualified to donate. I learned this by talking to my donors not my transplant coordinator. I am not aware of anyone else who has contacted Mayo about being a donor. I have been told by my coordinator that if a living donor is approved by Mayo, Mayo will not tell me. Once a donor has been approved, the donor will be told that it is their responsibility to contact me and let me know. Then my donor, my transplant coordinator and I will work together to schedule the transplant.

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Thanks for helping me to understand this process, @marvinjsturing.

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@morty

I would like to know if I have a list of altruistic donors. Do I need to continue my plea for donors. Are they talking/scheduling someone for testing. Are they pro active in getting someone to come in. Do they move on immediately if they don’t get a response from a potential donor.
Can I ask them to put a specific donor that I know that has recently come forward to the top of the list for consideration.
Why can’t they let me know any of these questions without revealing specific details.
Who do I speak to from the recipient team that can shed any light on my quest. Is there a liaison between the two groups to find out what’s going on.
How many donors do I have in the list. Some I know, others could be strangers.
I understand that the donor team is an advocate for the donor. I would just like to know if they are working with someone and the status.
If someone says they can’t donate until next year, do they move on to the next person.

I am trying to have my transplant before I need to go on dialysis. I only have until the end of the year, I think. Next blood test is the end of the month.

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@morty, Organ donation is a miraculous event, and it definitely does not occur as easily as TV and movies would lead us to believe. With that in mind, I am concerned about how you are getting along. I was on dialysis before my transplant because of acute kidney failure. How are you feeling and have you needed to start dialysis?

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@jolinda

Hi Susan,

I am sorry this had been so frustrating, it's tough to wait when your life is on the line! I know because I've been there. A few things to keep in mind…

* insurance only allows for one person to be tested at a time this is NOT something the center control
* anyone who has high blood pressure, diabetes, heart issues, or are overweight, etc. will not make it through the process
* as Ginger mentioned, some people say they are calling in but don't
* some people can't get their spouses or family to agree to let them donate
* often potential donors are healthy enough to donate but don't want to be part of a swap if they aren't a blood match
* donors can learn half way through the process that they have health issues
* only the donor themselves can choose to keep you informed

When I needed a kidney (due to PKD) I was surprised how many donors came forward but didn't make it through the whole process. Many people go through 5, 10, or more before they find a match. Trust me the center wants you to have a successful living donation and they will work very hard to help you.

In the mean time control the things you can control! Follow EVERYTHING your doctors tell you and stay healthy. The flu or a bad cold can quickly drop your kidney function. Stay away from sick people, illness can alter your immunity.

How are you doing otherwise? Are you on a restricted diet at all? Do you have a caregiver lined up for transplant? How are you feeling?

Jolinda

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@jolinda you obviously know a lot about the whole process that potential donors must go through.

Do you know what the psychological requirements are? If a person had been treated for depression would that eliminate them?
JK

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@marvinjsturing

@hopeful33250 Teresa, I really don't have have questions at this time. I have read a lot about the donor and recipient process. When I asked for donors, I had 2 people talk to me. Neither one qualified to donate. I learned this by talking to my donors not my transplant coordinator. I am not aware of anyone else who has contacted Mayo about being a donor. I have been told by my coordinator that if a living donor is approved by Mayo, Mayo will not tell me. Once a donor has been approved, the donor will be told that it is their responsibility to contact me and let me know. Then my donor, my transplant coordinator and I will work together to schedule the transplant.

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That has been my experience as well. My donor told me about 6 weeks ago she was going to Rochester for screening and has kept me updated throughout. I do know that others have registered but have not heard if any were a match. As of now We are waiting to get scheduled…will probably need to wait until elective surgery is available again.

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@frmike

That has been my experience as well. My donor told me about 6 weeks ago she was going to Rochester for screening and has kept me updated throughout. I do know that others have registered but have not heard if any were a match. As of now We are waiting to get scheduled…will probably need to wait until elective surgery is available again.

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Good Morning, @frmike. Welcome to Connect. I assure you that you are not alone with worry and concern about the current cancellation of elective surgeries.

Here is an article that I want to share. It is an easy-to-read article about the difficult decisions that the transplant departments and that patients are experiencing.
Organ Transplant: 'Essential' Surgery in a Time of Pandemic
— Centers describe the tough choices, strategies, and outcomes they're seeing
MedPage Today March 26, 2020
https://www.medpagetoday.com/infectiousdisease/covid19/85623
Here are discussions where others have also talked about having their surgeries delayed – look for these in the newest posts
COVID-19 and Transplant PatientsI
https://connect.mayoclinic.org/discussion/covid-19-in-transplant-patients/
Living Donor Kidney surgery next Tuesday: Any advice?
https://connect.mayoclinic.org/discussion/living-donor-kidney-surgery-next-tuesday/

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