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I'm a transplant caregiver. Let's connect and share.
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
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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
@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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1 ReactionThey put her off. She’s extremely high risk. UNOS has a medically urgent clause which transplant doctors can step up. They won’t start testing her donor blood type matches tissue testing. She’s are cousin. She’s in the hospital about 1week out of every month. They say her GFR number doesn’t count when she’s in the hospital. Her blood work is text book with someone who has been type 1 for 50 years and stage 4 kidney failure. UNOS doesn’t even mention type 1. If you could suggest and advocate that I could personally speak with. My sister is dying! I’m not being dramatic. It’s a eye awakening experience when these centers focus on successful numbers.
Hi Cathy, I removed your cell phone number as this is a public forum and we recommend not posting personal contact information.
To speak with a Mayo Clinic transplant specialist, please contact the Mayo Clinic Transplant Center https://www.mayoclinic.org/departments-centers/transplant-center/contact-us/occ-20209784
Arizona
800-344-6296 (toll-free)
8 a.m. to 5 p.m. Mountain Standard Time, Monday through Friday
Email ARZTransplantCtr@mayo.edu
Florida
904-956-3309
8 a.m. to 5 p.m. Eastern time, Monday through Friday
Email transplant-fla@mayo.edu
Minnesota
866-227-1569 (toll-free)
8 a.m. to 5 p.m. Central Time, Monday through Friday
Email transplant-rst@mayo.edu
Is your sister a patient at Mayo Clinic?
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1 ReactionI apologize! Thank you for the information.
She’s not a patient. We are hopefully heading to university of penn.
Someone reached out to me. I’m good and thank you for being there for me. Fingers crossed. What a great site Mayo offers to people dealing in all walks of transplant life!
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1 ReactionThat's great, Cathy. I hope you get guidance and answers to your questions. I'm sure you'll have more things you'll want to ask as you go through the process. We're here when you need a community to support you on the journey.
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2 ReactionsI’m just grateful I found your site!
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4 Reactions@cathyherman I am so sorry that the transplant coordinator you have been dealing with has seemed to be combative. It sounds as if things are going better right now but if not I would definitely not continue with the transplant center that is giving you that attitude. I did not care for the first transplant center we went to (for me), nor did my husband so I did my own research and chose a different transplant center and I was very happy with them, they were wonderful.
I hope things work out well at U Penn. My transplant center was Mass General in Boston. If you are somewhere between PA and MA there are a number of excellent transplant centers in MA such as Beth Israel, MGH, and U Mass in Worcester.
JK
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