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Rosemary, Volunteer Mentor

Posts: 848
Joined: Aug 30, 2011

Wow, you have been thru a lot. Hang in there! It will

Posted by @rosemarya, Jun 26, 2013

Wow, you have been thru a lot. Hang in there! It will be a relief when you get the official approval for being listed for a donor organ (I know that sounds strange, but in your/our circumstance priorities go tipsy-turvy).
It sounds like you have been completely checked out. As far as the AIH, let me say that for a while, my doc thought that I had AIH and treated me witn prednisone for a while, but then the ERCP by liver specialist at one of Ky’s trxp centers, showed the images narrowing bile ducts of PSC. So the PSC became the priority for treatment and monitoring. All along the docs would question whether or not I also had AIH. And even after my trxp, they still mentioned it. But it did not change my treatment or become an issue. They told me that sometimes some of these come together. My advice is to not let ‘labels’ distract you. If you are at Mayo, they are going to treat you – what your body needs -not ‘just’ a disease. The shot that you got was for hep A and B. I hope all goes well as far as the malabsorption treatment. Don’t know how that plays into the liver concerns.
Have a safe trip home. And enjoy your homecoming and reuniting with family.
Rosemary @bink


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