Liver transplant - Let's support each other

@racing212 when you say last October I presume you are referring to October 2018: not this just past October. If that doctor is not at a hospital that does not do transplants and does not have a hepatology department, he/she is probably not that familiar with your condition.
I live in NH and there are only two hepatologists in the state, both I believe at Dartmouth. There is no hospital in the state that does liver transplants. I was at a Manchester hospital for HE episodes and they really were not that knowledgeable. If I knew then what I know now I would never have gone there but the times that I did my husband just wanted to get me care quickly. One time with a more serious Pre-transplant issue the hospital in Manchester did get an ambulance to bring me to Mass General.
JK

I've had episode of waking up 3 to 4 days later in a different hospital. That happened 3 times. The Dr's at one. Hospital told a friend that he didn't think i would make it to April. That was last October

During my pre-transplant period, while on the waiting list for a liver due to PSC, I was 'temporarily inactivated' when my blood lab results indicated possible cholangiocarcinoma. This required me to be inactivated until a biopsy could be performed and resulted in an "all clear" diagnosis. I would then be re-activated on the transplant waiting list.

@rodney9999, @contentandwell
Here is the definition of Active Candidate from the Organ Procurement and Transplantation Network>Glossary https://optn.transplant.hrsa.gov/resources/glossary/
"A transplant candidate eligible to be considered for organ offers at a given point in time. Some transplant candidates are temporarily classified as “inactive” by their transplant center because they are medically unsuitable for transplantation or need to complete other eligibility requirements."

Rodney9999, this is an excellent question and this is the perfect place to post it. I hope the definition is helpful to you. There is probably no way of knowing what might lead to someone being inactivated, and for how long. But it does happen, and when a person is reactivated, they return to their 'place' as far as ranking by time already spent on the list. This was all new to me when it happened, I guess you can say that I learned by experience.
It is good to hear your voice! How are you getting along?

@racing212 Cirrhosis really does affect each of us differently. It sounds as if your HE episodes have been fairly severe, yet your MELD is still rather low. The worst HE episodes I had did not bring me close to passing out, although I do remember being almost catatonic with one. With most, I was just very difficult at the worst, and just confused with milder ones -- with those a long nap cured them.

The more I have learned the more I think that diet is definitely an influence on HE, certain foods do create more ammonia. Those are generally protein foods, I think that red meat is probably the worst of those. I kept my meat/fish at dinner down to 4 oz which was different for me because we had generally had larger portions of meat. I was told to not give up protein though so I did continue to have it. Knowing what I know now I think I would keep a food diary of what I eat so when I had an HE episode I could look back and see what may have brought it on.
I have heard of some people giving up meat-based protein entirely but I would not and could not do that myself. My hepatologist (at that time) did not advocate that and I do not believe they do at Mayo either but I am not sure about Mayo.
JK

@racing212, I also live at a distance from Mayo. However, my local docs do coordinate with Mayo, and that gives me confidence that I get the best of care. I hope that that is the way it is with youur docs. I am sorry to hear about your hospitalization. Pre transplant. my hospital and ER visits were quite frequent, and I never got used to them, however I did (unfortunately) become well known to the staff there.
I sincerely hope that you will soon be match for an available organ. It is a matter of time, and speaking from my experience, the waiting can feel intolerable.
I want to emphasize the importance of eating healthy and remaining active prior to transplant. Your body will be better prepared for surgery and recovery will be easier. Are you able to eat and get some exercise?

I was in hospital in august . my amonia levels went up and i passed out. My meld is 17. I do go to Rochester and its about 3.5 hours away

I was in hospital in august . my amonia levels went up and i passed out. My meld is 17. I do go to Rochester and its about 3.5 hours away

Hi @racing212 So how are you doing a year out? What is your MELD now? I was on the list for almost a year and a half. I expected to be waiting at least two more months but a transplant came through earlier than anticipated. I was at MELD 28 at that point but in another couple of weeks I am sure that would have increased to 30 or 31.
Are you feeling well? I believe you had mentioned being on lactulose and xifaxan. Are your HE episodes fairly well controlled now? Mine were pretty well controlled when I was taking xifaxan but as my conditioned worsened they did resume, but not as frequently. They did add lactulose back in to help even more.
I went back and checked your prior posts and see you go to Mayo in Rochester. Is that far from you? I believe if it is that when you are getting very close they will have you staying there so you will be there when a compatible liver becomes available. My transplant was at Mass General in Boston so that's only about 55 miles down the highway and they were able to just call me when they had a liver.
Try to not get discouraged, it will happen. We will all rejoice with you when it does. Please keep us up to date on how you are doing.
JK

I've been on the list over a year....

Sorry to change the subject....has anyone heard the term “activation list”?
A co-worker of my wife indicated recently being placed on the activation list however this person has been on the waiting list for some time.

Just curious what the difference is if any. Thanks.