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Thanks so much @bildad for this excellent information! I am so glad you shared this warning with your Connect family.
They definitely appear adamant that this new drug is not for us! No worries on the hospital name. I was just curious if I am missing out on messages coming to Mayo transplant patients. (Sorry to hear that you are going through a rough patch with your provider. I am sure that's stressful!).
Thank you again for being so thoughtful and sharing such important news about this new drug! ❤

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Replies to "Thanks so much @bildad for this excellent information! I am so glad you shared this warning..."

@hello1234, I don't think you missed a message from your transplant team. In my experience, I do not receive mass distributed messages via my Mayo Patient Portal, unless it is something that directly applies t directly to my own situation. I have on occasion seen general notices, that do not show up on my email notifications, when I log in.

The statement in bold text in the letter that @bildad shared: "If you are diagnosed with Covid-19, Please contact your transplant coordinator …" is a very important one for all of us. When my husband tested and retested positive with Covid-19 in 2020, I immediately got tested and contacted my coordinator. Her advice was to let her know my results and when I tested negative, she told me to contact her if anything changed because she and the transplant team would want to direct my local physicians on my treatment.
I think that I am fortunate to have a PCP who observed in routine labs 20ish years ago a possible liver complication, who sent me to a specialist, and who now directs my daily health care locally. He and my local ER are always ready and willing to coordinate with my Mayo transplant team. They have, on occasion, contacted the Mayo Clinic Transplant Dept. It is a good feeling for me to know that Mayo can direct my care when needed, from a distance of 800 miles!
Hello, do you know that Mayo Transplant has a 24/7 phone number for emergencies after regular hours?

For anyone with a transplant: What guidance has your transplant team offered for your care/treatment as a result of a positive Covid-19 test, or monitoring from a distance?

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