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Liver transplant - Let's support each other
Transplants | Last Active: 6 days ago | Replies (1572)Comment receiving replies
@joanaiken I hope the biopsy went well. Tests like that can be so unnerving.
@jeanne5009 With a MELD of just 8, how severe are your HE episodes? Have any of them caused you to be inpatient?
@racing212 I too had HE a number of times that landed me in the hospital for two or three days. I have heard of people being in the hospital for much longer periods with HE though. In retrospect, I wish I had been transferred to my transplant hospital in Boston, rather than being in the local hospital here in southern NH. They were not very knowledgeable about HE and the treatment I had there was deplorable.
HE is scary and depressing. I consider my mind to be my best asset and to be so confused and irrational was very upsetting. I could feel them coming on and always thought if I just resisted enough I would not get one, but of course I did.
@beckyy39 If you have two willing donors who may be a match can they get tested and possibly have a transplant elsewhere? Having a living donor would certainly quicken the process.
@khh I too welcome you to Connect. I am very surprised that you have not seen a doctor. When I was to have my first appointment with a hepatologist they suggested that I could see her NP sooner than I could see her but I said that I wanted to be seen by a doctor and I was. On every appointment while I was pre-transplant I was seen first by the NP and then the doctor came in. Is there a different transplant center close enough to you that you could switch? For me, not seeing a doctor in all of that time would not be acceptable. If you go to the SRTR database it lists all of the transplant hospitals in the country. I had my transplant at Mass General in Boston and can not say enough good about them. They were wonderful and continue to be post-transplant.
JK
Replies to "@joanaiken I hope the biopsy went well. Tests like that can be so unnerving. @jeanne5009 With..."
@contentandwell
I have not had anything severe enough to send me to the ER. Always able to get to the doctor. Mine is mild with headache, extreme tiredness, crazy dreams and irritability. I take Rifaximin 2 times a day and was on lactalose but cut back on that just recently when I developed chronic diaherria. Going in for an EDG and biopsy of colon next week. I have also developed vertigo and interstitial cystitis. Both are really challenging. Never a dull moment. AND...my caregiver has developed a cyst on his pancreas. He is deciding when to have the Whipple procedure done. Lets talk about stress. We are all dealing with roadblocks that can sideline our efforts to ....taking care of us.
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Thank you for asking about the biopsy. The procedure went well. The results showed no acute rejection, but the beginning of a chronic mild rejection. Cellcept was added to my medication regime. Tomorrow I will have repeat labs and an MRCP without contrast. There may be some issues with the bile ducts. If this exam is not conclusive, t may be followed by an ERCP. Post second liver tx I had this procedure twice to place stents for bile duct stricture due to scar tissue. All in all, taking this a day at a time. I trust my team at Mayo Phoenix.