Confused Recipient

Posted by morty @morty, Tue, Sep 3 8:19pm

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

@morty Hi, Susan. This must be frustrating for you! You said you have spoken to your team. Is there a patient advocate on that team, who can get you some answers? You're right, there are HIPAA laws, so there is information they are not able to disclose to you. Have you checked with the people who indicated to you their willingness to donate, and get it "right from the horse's mouth" if they have been evaluated, or not? That may be a start for you. You are probably aware that even though someone may want to donate, they might be excluded due to their own health. And do remember that although someone may express the desire to donate to you, they might change their mind. That is what happened in my husband's case. I hope you will get answers to alleviate your concerns, and let us know what happens. We care.
Ginger

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@morty @gingerw I was placed on the active list for a kidney transplant at Mayo in Rochester last June. My transplant coordinator told me that she was not allowed to give me any information about possible donors. If I wanted any information, I would have to talk directly to my donor. (My sister was going to be my donor. Two weeks before her scheduled evaluation, she was diagnosed with mantel cell lymphoma. At this time, I am waiting for a deceased donor.)

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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

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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I have been on the list for two years. I have made a few trips with potential donors to find due to testing, they were not a match. I get that. It’s hard but reality.
I’m taking great care of myself. I’m a vegetarian and staying healthy, thank you. My husband will be my caretaker. We are all set. He was to be my donor then found out he had a mass in his kidney and the following week his kidney was removed.

My frustration is my team told me they weren’t testing anyone and the same day they told a potential donor they were “speaking” to someone at this time. Can they communicate with each other? I’m not asking for names, just hope! Why can’t I be in the loop regarding that? Maybe I don’t understand the HIPPA laws that can’t let you know what’s happening regarding your own life.
I would like an advocate that I can keep in touch with. Maybe I should be calling my social worker? I adored her.

I’m happy to hear you feel the donor team is actively working with my potential donors.
I also have PKD.

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I can't imagine how frustrating that would be, I hope things fall into line soon.
Before I had my 1st official Mayo appointment I did an initial screening, talked with a nurse, talked with a social worker, filled out a more lengthy questionnaire, had a batch of blood tests & a 24 hour urine collection sample done. This was over about a month's time.
It was all part of testing but none of it was on their books as a donor appointment, so I can see how you could get 2 different answers.
My evaluation took 2.5 full days at Mayo and I was lucky to have an answer from the donor board about a week later that I was eligible to donate. My recipient knew nothing of any of it from Mayo until I scheduled a surgery date. I found out later that they did call her in for additional testing but she was so used to a million appointments that it didn't occur to her it was for imminent surgery.
From the 1st phone call Mayo was very firm that they were my team and their job was to make sure I would be safe & understood every step I'd be taking and that the recipient had her own team to do the same for her. I talked to her for the 1st time after the donor board accepted me & met her the day before surgery.
I wish you the best, it sounds like you have great people in your life.

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@marvinjsturing

@morty @gingerw I was placed on the active list for a kidney transplant at Mayo in Rochester last June. My transplant coordinator told me that she was not allowed to give me any information about possible donors. If I wanted any information, I would have to talk directly to my donor. (My sister was going to be my donor. Two weeks before her scheduled evaluation, she was diagnosed with mantel cell lymphoma. At this time, I am waiting for a deceased donor.)

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I appreciate the update, @marvinjsturing.

From your post, you seem to be interested in information about possible donors. What sort of things would you like to know about possible donors, if you could have that information?

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@hopeful33250

I appreciate the update, @marvinjsturing.

From your post, you seem to be interested in information about possible donors. What sort of things would you like to know about possible donors, if you could have that information?

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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

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.

Jump to this post

@morty, It is my wish that you and all persons who are waiting for a transplant will get one soon.
How are you feeling while you wait? Have you found anything to occupy yourself while waiting?

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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.

Jump to this post

@morty My suggestion is to speak with your social worker, and express your concerns and questions. I am sure they do not want you stressing yourself needlessly, nor do they want to give you false hope. There are many thousands waiting for a kidney, either through live donor or deceased donor. A friend of ours who recently went through a living donor transplant, knew who had raised their hands, who had been tested and all right along, because he kept in contact with these people, himself. Have you kept a list of names, and contacted them? What is your GFR the last time it was checked?
Ginger

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@hopeful33250

I appreciate the update, @marvinjsturing.

From your post, you seem to be interested in information about possible donors. What sort of things would you like to know about possible donors, if you could have that information?

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@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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@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.

Jump to this post

@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

Jump to this post

@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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