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I'm a transplant caregiver. Let's connect and share.
Transplants | Last Active: Sep 8, 2021 | Replies (20)Comment receiving replies
@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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They 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.