Looking for other pancreas only transplant recipients

Posted by Donna N @donnan, May 29, 2018

Had my transplant almost 2 years ago. I would like to connect with others.


@2011panc & @donnan I’ve enjoyed reading your posts. We have some things in common. It is nice to know others understand. Hypoglycemia unawareness is the worst, right? Thank God I’ve not had this much since the transplant. The blood sugars used to bounce from 20’s to 600’s and back with a double digit A1C until after transplant it was 5.3. I live in the twin cities metro area of MN. My transplant was done at U of MN. The pretransplant evaluation, education and transplant itself were fantastic but in the next 11 years I felt the follow up was less than desirable. Two years ago I felt like I was starting to decline & loose ground. I had a pretransplant evaluation at U of MN and at Mayo in Rochester. My insurance covered both. The two experiences were very different. I’ve chosen Mayo and plan to have a future kidney transplant there when that becomes necessary. My labs are done locally every 3 months. I found they became less frequent as post transplant time went on. My local team of providers sees me regularly, monitors everything and communicates well with Mayo. I go for an annual pretransplant review at Mayo. The U of MN team is no longer in contact with me. I appreciate your statements of faith. I am a believer as well and have added both of you to my prayers. My name is Cheryl.

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At 64.5 I will check with Mayo JAX transplant insurance department what my options will be. They will direct me to plans that cover Mayo.


@gman007, I want to invite you to post your concern about your nausea and chronic pancreatitis here.
@donnan, @cehunt57 , @2011panc, I want to invite you to meet my friend, Gary. He is not a transplant patient, but I wonder if you might have something from your pancreas experiences that might be helpful.

Gary, You are welcome to take the microphone !

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@river, I want to send you a second Welcome. I am sorry that I cut my first on short, but I ran out of time on Saturday.

I recall that in an earlier post that you mentioned having problem getting an appointment about a transplant evaluation. Have you been able to get an appointment scheduled ? Have you had contact with anyone?

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