Questions about Rules for Transplant Caregivers while at Mayo Clinic

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?

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.

@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

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?

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. 😢

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?

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?

@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

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

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.