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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
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
Replies to "I’m so happy for everyone. My experience is troublesome. I’m my sisters caregiver. Juvenile onset type1..."
@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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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?