Liver transplant - Let's support each other

3 years ago, I went in to have my gallbladder out and found out I was a Metavir 4. My mother does as well. I quit any social drinking, aleve,aspirin, everything that day. My meld varies but stays just below what is “required” for the list. However, the remainder of my findings are just about incompatible with life. I am a physician so I can realize the severity of my US, CT etc. I am 52 years old and I believe I could have many more years to help patients. I am a good pathologist. The NP that sees me down here looks at the MELD score and has not let me have a consult with a transplant surgeon, who I would think would be more likely to look at the totality of my findings. I have followed every letter of the law for 3 years with not even a consult. That is where I am now.

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Hi @khh, has the NP explained why you haven't had a consult with the transplant surgeon? May I ask, are you a patient at Mayo Clinic or another institution?

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Did you get any of that or did I lose the entire thing I typed?

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Hi @khh, has the NP explained why you haven't had a consult with the transplant surgeon? May I ask, are you a patient at Mayo Clinic or another institution?

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I guess I lost it. Anyway, she has stated upon my request, that she will set one up for after my appt the next time. That hasn’t happened. She is one of the NPs with the GI/liver people. No I’m not on any program list This is the first time I have reached out. I know 2 others on the list here at UMC; things have not gone well. She has not even worked me up yet. All of my friends who had transplants have gone elsewhere. I know your Jacksonville facility would be closer, but I was initially thinking about my family in Illinois and my boyfriend in Grand Rapids. Sorry I dozed off while I was typing.

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I guess I lost it. Anyway, she has stated upon my request, that she will set one up for after my appt the next time. That hasn’t happened. She is one of the NPs with the GI/liver people. No I’m not on any program list This is the first time I have reached out. I know 2 others on the list here at UMC; things have not gone well. She has not even worked me up yet. All of my friends who had transplants have gone elsewhere. I know your Jacksonville facility would be closer, but I was initially thinking about my family in Illinois and my boyfriend in Grand Rapids. Sorry I dozed off while I was typing.

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@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

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@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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@jeanne5009 I hope your HE continues to be that mild. Some people never have it at all so it probably will.
As I mentioned, for a very long time I just took xifaxan two times a day and that kept me HE free.
I hope your EDG and biopsy don’t unearth additional problems, and that your caretaker’s cyst will be taken care of easily. You and he have your hands full.
JK

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I’m trying to hold it together and yes I’ve had trouble with HE. I have been taking Xiphaxan for almost 3 years now. Unfortunately. This is only the tip of my iceberg. I don’t think anyone knows how I’m walking around. I guess I’m very stubborn. I can’t always respond to everyone bc I’m still working full time and I fall out when I get home. Most recently my AFP began elevating.
I just want to be evaluated by someone with more experience and knowledge than the NP I’m seeing. Thank you for your prayers!

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