Questions about Rules for Transplant Caregivers while at Mayo Clinic

Posted by booma @booma, Oct 11, 2021

My brother needs a transplant and his wife will donate her kidney. They will therefore both need caregivers . My sister and I would like to be there to help but I don’t want to stay in his room as caregiver .. can we stay in a separate room ( Rochester facility) .. if anyone has info on this please advise. Thanks

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Hello @booma Wow, it sounds like you have a close family. 3 of you have stepped forward to help your brother. You might want to follow the blog below for information on transplants.
https://connect.mayoclinic.org/blog/transplant/
I don’t really know enough about rules at Mayo Clinic so I’m going to ask @rosemarya , who has had both a kidney and liver transplant to join this conversation.
When is the transplant scheduled for?

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It hasn’t been scheduled yet ..the donor (my sister in law) is going through testing but they are both concerned they don’t have caregivers to stay with them.

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@booma

It hasn’t been scheduled yet ..the donor (my sister in law) is going through testing but they are both concerned they don’t have caregivers to stay with them.

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@booma Welcome to Connect. You are absolutely correct that both your brother and his wife will need a caregiver after surgery. This will be one of the things discussed as your sister goes through the testing to be a donor.
-Here is information from the Mayo Clinic Living Donor Toolkit
Living Donors
https://connect.mayoclinic.org/blog/transplant/tab/resource-36/
Some recipients/donors have chosen to stay at the Gift of Life Transplant House in Rochester. Is that the facility that you are referring to? It is where my husband and I stayed during liver and Kidney transplant in 2009. We were actually there for an extended period before my transplant, too, while undergoing treatment. During that period I saw many recipients and donors coming and going. I feel certain that your situation is not a unique one. Here is the phone number (507) 288-7470 for the Gift of Life House (GOL). If you call during normal business hours, I know that Mary Wilder or one of the staff will be able to assist you and answer your questions.
-website for the Gift of Life House https://gift-of-life.org

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@booma

It hasn’t been scheduled yet ..the donor (my sister in law) is going through testing but they are both concerned they don’t have caregivers to stay with them.

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Hi Booma, I wanted to check in to see if your questions were answered about caregivers and staying with your brother and sister-in-law while at Mayo Clinic in Rochester. How is the evaluation going?

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@colleenyoung

Hi Booma, I wanted to check in to see if your questions were answered about caregivers and staying with your brother and sister-in-law while at Mayo Clinic in Rochester. How is the evaluation going?

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Thank you for asking. Most donor candidates in our family have been rejected due to various health reasons including my brothers wife. I am 72 and considering .. I have healthy kidneys but have high blood pressure (which runs in our family) this may be an issue. Doctors want to put a port in my brother and he is procrastinating. We are running out of options. 😢

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@booma

Thank you for asking. Most donor candidates in our family have been rejected due to various health reasons including my brothers wife. I am 72 and considering .. I have healthy kidneys but have high blood pressure (which runs in our family) this may be an issue. Doctors want to put a port in my brother and he is procrastinating. We are running out of options. 😢

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Booma, that is tough news to get when there is no match despite several family members stepping up to help. Do you know why your brother is reluctant or résistent to getting the port?

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@booma

Thank you for asking. Most donor candidates in our family have been rejected due to various health reasons including my brothers wife. I am 72 and considering .. I have healthy kidneys but have high blood pressure (which runs in our family) this may be an issue. Doctors want to put a port in my brother and he is procrastinating. We are running out of options. 😢

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Hi Booma, what type of port is your brother resisting? Is this for dialysis or for bloodwork and medications?
@gingerw is in the process of having a port for dialysis and I’m sure she’d share some input in what to expect.
I’ve had several different types of ports implanted for facilitating medications, IVs and blood work and would be happy to help allay his fears.
Hopefully a donor can be found for your brother. In the meantime, if your brother has questions about the transplant procedure, fellow mentor
@rosemarya has had a kidney and liver transplant.

You mentioned you have high blood pressure and not sure if you could donate or not. Have you discussed your option of providing the kidney with your doctor? Are you a potential match?

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@loribmt

Hi Booma, what type of port is your brother resisting? Is this for dialysis or for bloodwork and medications?
@gingerw is in the process of having a port for dialysis and I’m sure she’d share some input in what to expect.
I’ve had several different types of ports implanted for facilitating medications, IVs and blood work and would be happy to help allay his fears.
Hopefully a donor can be found for your brother. In the meantime, if your brother has questions about the transplant procedure, fellow mentor
@rosemarya has had a kidney and liver transplant.

You mentioned you have high blood pressure and not sure if you could donate or not. Have you discussed your option of providing the kidney with your doctor? Are you a potential match?

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@loribmt Yes, ports can be an encompassing term, definitely!

@booma Your brother may be overwhelmed with all that is going on. While we all wish it weren't so, as a kidney patient we sometimes hear many differing thoughts and experiences that confuse/scare us further! I can only speak for myself here. After years of kidney disease, I will have a fistula placed on 12/27 as a dialysis port, to be used in the future. It takes about 3-4 months to heal or "mature" fully, so we are ahead of the need right now. If I was to suddenly need dialysis, and a port is not available, the medical team would have no choice but to do a chest port catheter for immediate access. That's not something we want to do, so we are being proactive. And, my first choice for access for dialysis will be peritoneal dialysis; the fistula will be held "in abeyance" for use if needed, and it might not be needed at all.

Having a dialysis port is a very real reminder that our kidneys are not getting better, and that can definitely be anxiety-producing. We need to hope for a transplant, but also need to be realistic "in case". As Lori mentioned, @booma, speak to the transplant team about being a living donor candidate, and your specific health issues. My sister was willing to be evaluated to donate to me, at her age of 73, before we found out that I cannot be transplanted due to other health issues [I am a multiple myeloma patient undergoing active chemotherapy]. Also, let friends know your brother needs a kidney; you never know when someone may step up and help!

Here is a link to Renal Support Network's articles on dialysis, types and what to expect: https://www.rsnhope.org/kidney-101-just-diagnosed/dialysis-treatment-options/
How is everyone feeling today, in your family?
Ginger

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@booma

Thank you for asking. Most donor candidates in our family have been rejected due to various health reasons including my brothers wife. I am 72 and considering .. I have healthy kidneys but have high blood pressure (which runs in our family) this may be an issue. Doctors want to put a port in my brother and he is procrastinating. We are running out of options. 😢

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They are scheduled to put a port in me and I know how he feels because you feel so helpless and lose your independance

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Yes I think it’s a form of denial and the reality of it being the “last resort” before dialysis. There’s not much family can do to convince him to do it ..he has to decide on his own.

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@booma

Yes I think it’s a form of denial and the reality of it being the “last resort” before dialysis. There’s not much family can do to convince him to do it ..he has to decide on his own.

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@booma Yes, it is an individual decision, to be sure. If I had the chance to tell your brother, I would say "Bro, you get to make your decisions. The doctors will not go ahead without your agreement to any procedure. Being informed by your team what the pros and cons are, think about it all, and where you want to be in a year, in five years, in ten years. And look ahead."

@boomer88 I found your comment so interesting. I felt the same way. Almost 7 years ago my then-medical team told me at some point this rare kidney disease I had might eventually lead me to dialysis, and I thought "oh, it's a long long way off, I'll deal with it then". I have watched my eGFR drop, and then 2 months ago my nephrologist brought up port placement, and swept the carpet out from under me!

Let me relate my husband's story. In 2001 he was told about his high blood pressure, and put on medication for it. But the damage to his kidneys had already started. In 2011 he had to go on dialysis [choosing peritoneal], and and fought that, also thinking his independence was gone. He wanted one last cross country tour on his motorcycle, wanted to do a lot of things, still working full time, etc. In the end, he took that long trip, and several others. Never missed a day of work. And didn't lose his independence; he made his dialysis work for him by working at it. He researched and built an inverter and deep cell battery set-up that eventually allowed exchanges out in the desert in a tent trailer. He has told this story to many, and is proof dialysis doesn't have to be end-of-life-as-you-know-it. He was transplanted 10/1/2016, and is doing great.

To both of you, yep, I can relate to where you are, how you feel, in my headspace and body. Write it out, your feelings. your questions to be shared with your medical team. Look for and lean on your support team. Will you do that?
Ginger

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@boomer88

They are scheduled to put a port in me and I know how he feels because you feel so helpless and lose your independance

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@boomer88, I want to drop in for a short visit and ask you how you are getting along. As a patient, I understand how different our emoti0ns and view of a procedure is from that of our loved ones. Both are good, don't get me wrong, but there is an emotional uncertainty and fear that was hard for me to explain to my husband when I was undergoing my own dialysis treatment. When I was scheduled for a procedure to replace my emergency neck dialysis line with a more durable temporary line into my chest, I was really bothered by the insertion of a 'foreign' thing into my own body. He never understood that.

How are you getting along as you proceed toward your scheduled procedure?

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