Total mess: I've had the worst year ever I've... - PBC Foundation

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Total mess

mjk98 profile image
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I've had the worst year ever I've have PBC with an overlsp of AIH since diagnosed in 2015 I am supposed to be getting a thoracic spine operation but can't get cleared because my blood keeps coming high on the APTT & PT which means I can't clot and if I can clot I can't have the surgery.

My liver enzymes were in a normal range except the alkaline phosphate was elevated now its not in a normal range anymore I had to go to a hemotolgist and will be seeing her on July 31st and then my hepatologist Right after they have to be the ones to clear me I have been taking a lot of pain medication which I think is elevating me but I'm in a lot of pain I only take like one a night and it also helps me because I've been getting these spouts of shivering and then my body is aching and nauseous and I can't move and then I take it and and I feel better it's actually ibuprofen 600 has anybody had these kind of spells before I'm just so sick of this whole thing it's very depressing If I didn't have to have the surgery I wouldn't but they said that if I don't it could be irrepitable

I have a huge herniated disc pressing on my spine. I do not take urso or prednisone prednisone makes me manic and Urso makes me completely nauseous so I've been taking the 6MP drug since 2017 and it's kept me really balanced so that's my story.

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butterflyEi profile image
butterflyEi

That is a lot to cope with, I hope you and your medical team find a way through the mire.

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