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

Posted by billacaregiver @billacaregiver, Sep 14 9:36am

Repeat from my Caregiver post.

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.

Jump to this post

@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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