I'm a transplant caregiver. Let's connect and share.

Posted by billacaregiver @billacaregiver, Sep 14, 2020

Hello,
My name is Bill. I’ve been looking for a group to share experiences and concerns with when they arise. My wife and I have been going through the liver transplant process for over a year. Four months ago she received a liver transplant. I was and am happy to do whatever is needed like shopping, cleaning, cooking, hugging, loving and going to appointments. So far things are going well and she is mostly back to her normal independent life. The pandemic does give me some anxiety along with concerns about the transplant since now being on immune suppressants makes her more susceptible to the environment. Like everyone else we cannot do all the things we want to because of the pandemic.

One of my sisters is a retired nurse and is someone to turn to for support.
We are both retired. She works part time from home for a cancer support group helping people living with cancer. I also volunteer for the same group and other non-profits.

One thing I learned is not to worry about things out of my control and to focus on things that I can control.
So that’s it in a nutshell
All the best…
Bill

Hi, @billacaregiver Congratulations to you and your wife on her transplant. It sounds as if she has had a great recovery, that's wonderful. I am four years post-transplant this month and the worries about COVID still persist.

Your wife is lucky to have such great support from you, and from your sister.

This is very wise, and something I often tell my husband:
"One thing I learned is not to worry about things out of my control and to focus on things that I can control."
My husband is a real worrier.
JK

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Hello JK,

Thank you so much. Sounds like you’re doing well too. Transplants are a trip into the great unknown because we really didn’t know anyone who had one and did not know what to except as far as the whole experience goes.

If anyone has information about rheumatoid arthritis and using Sulfasalazine and then the enzymes go up, let me know. They started the usage three months after the transplant due to severe arthritis pain then stopped the usage last week. We are waiting for the enzyme numbers to go back down. Hopefully that is the cause. A biopsy showed no rejection.

Seems like Tennyson had it right.

“To strive, to seek, and not to yield.”

Take care.

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Hi @billacaregiver, I hope you don't mind but I edited the title of this discussion to create a group where transplant caregivers can hang out. The new title is " "I'm a transplant caregiver. Let's connect and share." and it resides in both the Caregivers group and the Transplants group. What do you think?

I'd also like to bring in some fellow transplant caregivers into the discussion, like @gingerw @jodeej @debbief @genocurt @nkdonahue @tasher3433 @saratodd @lisamb and others.

Bill, you may also be interested in these related discussions:
– Transplant Caregiver Advice: Got Tips to Share? https://connect.mayoclinic.org/discussion/transplant-caregiver-advice-got-tips-to-share/
– COVID-19 and Transplant Patients https://connect.mayoclinic.org/discussion/covid-19-in-transplant-patients/

Bill, does your wife have rheumatoid arthritis?

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Hello @ Colleenyoung, Yes rheumatoid arthritis. I will participate in transplant caregiver. Good idea.

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@billacaregiver

Hello @ Colleenyoung, Yes rheumatoid arthritis. I will participate in transplant caregiver. Good idea.

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@billacaregiver, you may also be interested in this discussion to meet others dealing with RA.
– Rheumatoid Arthritis (RA) – Introduce yourself and meet others https://connect.mayoclinic.org/discussion/rheumatoid-arthritis-ra-introduce-yourself-and-meet-others/

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Do they have a group for RA here?

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@adlttl123

Do they have a group for RA here?

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Hello and welcome to Mayo Clinic Connect. It looks like this is your first posting though you’ve been a member for a while. Connect is a wonderfully welcoming community of members who help each other through our shared experiences.
May I ask what brought you to our Connect community?

Since you posted under the transplant (caregiver) group did you or someone you care for have a transplant?

Your question today is regarding a discussion group for Rheumatoid Arthritis.
https://connect.mayoclinic.org/discussion/rheumatoid-arthritis-ra-introduce-yourself-and-meet-others/
You can click on that link and be directed to the discussion. You’ll see under the opening paragraph down in the right hand corner the option for Oldest to newest…it’s a drop down menu. You can choose Newest to oldest which will bring you to current discussions. Feel free to post your questions there!

Do you have RA?

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Hello, @billacaregiver!

Just wanted to say congratulations on the successful treatment. She clearly has an amazing caregiver in you.

My husband is 7 years post transplant and still doing well — though the year before and after transplant were no picnic. (He had a lot of complications: related to ascites and kidney challenges — though he got to keep the latter!)

As for COVID, my husband follows this topic pretty closely. There was concern the vaccine would be challenged to work due to inmunosupression drugs. There have been trials with transplant patients and the results were better than expected. Net net: The vaccines do work for liver Tx folks, but they may need a booster at some point. Right now he only masks up if he will be indoors and stationery for a while. He also avoids large crowds — but he is curmudgeonly and would probably do that anyway!

Virtual high fives to you and your journey. It does get easier in many respects, I promise you. 💙💚

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I’m so happy for everyone. My experience is troublesome. I’m my sisters caregiver. Juvenile onset type1 diabetic for 50 years and stage 4 kidney failure. Extremely high risk with an underlying condition type 1. UNOS doesn’t mention type 1 in there handbook. I would love some feedback. We have a live donor. Navigating these centers is challenging. We are told one thing to are faces and receive letters saying quite the opposite. Not a candidate for dialysis. “Medically Urgent is a term UNOS uses and doctors can help with that process. She will die without a kidney transplant. Any suggestions or someone I can contact to help me navigate the process. Thank you

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@cathyherman

I’m so happy for everyone. My experience is troublesome. I’m my sisters caregiver. Juvenile onset type1 diabetic for 50 years and stage 4 kidney failure. Extremely high risk with an underlying condition type 1. UNOS doesn’t mention type 1 in there handbook. I would love some feedback. We have a live donor. Navigating these centers is challenging. We are told one thing to are faces and receive letters saying quite the opposite. Not a candidate for dialysis. “Medically Urgent is a term UNOS uses and doctors can help with that process. She will die without a kidney transplant. Any suggestions or someone I can contact to help me navigate the process. Thank you

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Hi Cathy,
Navigating the transplant system is challenging. There are quite a few transplant caregivers here who can help answer your questions or help you to know what questions to ask the transplant team. Meet @gingerw @billacaregiver @tasher3433 @saratodd @lisamb @tjcondonwrites and others.

Let's take one step at a time. Can you tell me what stage you and your sister are at? What information are you being told in consults? And what different information are you getting in writing? Do you have a transplant coordinator?

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Face to face of course we can do it. Different story every time. Coordinators are combative and set the tone and the rules . I’m more educated than the coordinators. They don’t keep up with UNOS. It’s a combative situation. I don’t understand because it’s life or death! I really need to speak with someone who I can ask questions and not feel threatened. My sister will die without a kidney transplant. This back and forth with these centers for 2 years. She has a living donor. I’m not angry . I can’t stand on the sidelines time is her enemy. Thank you. If I could speak to someone over the phone much appreciated. Cathy

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@cathyherman

I’m so happy for everyone. My experience is troublesome. I’m my sisters caregiver. Juvenile onset type1 diabetic for 50 years and stage 4 kidney failure. Extremely high risk with an underlying condition type 1. UNOS doesn’t mention type 1 in there handbook. I would love some feedback. We have a live donor. Navigating these centers is challenging. We are told one thing to are faces and receive letters saying quite the opposite. Not a candidate for dialysis. “Medically Urgent is a term UNOS uses and doctors can help with that process. She will die without a kidney transplant. Any suggestions or someone I can contact to help me navigate the process. Thank you

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@cathyherman Welcome to Mayo Clinic Connect. We are a community who shares our experiences and offers ideas that may help you.

What has your sister's doctors said about her case? Are you in contact with a transplant center? The testing for a live donor is pretty extensive, including both physical and psychological testing; has your donor started the process, yet? There is usually a social worker attached to your sister's team at the transplant center, who can help you navigate all the ups and downs, and get clarification. Keep good notes, and if you hear one thing but get something else in writing, question it!

Come back and let me know how you fare, okay?
Ginger

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