@rosemarya - Believe me I know. I just wish I had gotten connected years ago, gotten in the study earlier and most likely I would not be needing a transplant for another 5-10 years. But, that is not the case and I'm so grateful that my husband is supportive and willing accepts the expense to travel monthly to the Mayo, have them do the transplant etc. It is more complicated (local hospital 10 minutes away has a transplant center but their results are not great and a nurse even told me to stay away) so I'm blessed that I'm able to be seen by Dr. Torres and the transplant team soon. Just a little emotional and nerve racking.

@lcamino, It does get overwhelming with so many uncertainties ahead. Remember that you are not alone. You are blessed to have your family, medical team, and your faith. These are your strength.
Your current thinking, and questioning, and fears, and emotions are where mine were, too.
I sincerely hope that your visit goes well for you. We can talk more when you get home.
Rosemary

@rosemarya That's surprising that you were constantly monitored for ammonia. My PCP had started doing that but MGH said it is not a reliable indicator, some people have high counts and do not get HE and some people with low ones do. I have read that on websites also. I would have liked to have been monitored because the bad episodes I had were definitely when my ammonia count was high, and if monitored I could have taken more of the dreaded lactulose to prevent an episode.
You really were fortunate. When they took your liver out and dissected how bad was it? Despite the tests not indicating mine being horrible it was, it was almost totally gone.
JK

@rosemarya it really is amazing. Right up until the last six weeks I was functioning almost normally, just taking naps daily, but I went to my club almost every day, made dinner, shopped, the whole kaboodle. I was never sick except from the lactulose and that would pass within a couple of hours, and as I said eating eggs made it much worse.
Where were you being treated prior to Mayo?
I think I mentioned at one point that the only time food did not appeal to me was for a few weeks after transplant and then it was not nausea, just no hunger. I would make dinner, take a few bites and not be able to eat more but a couple of hours later I would re-warm dinner and eat it.
I have NEVER had to gain weight. A few people think I have lost too much but that's just because they are used to seeing me heavier. I know losing weight has taken a toll on my face though.
JK

@rosemarya, having both would definitely complicate matters. I too have to be careful of sodium, they say no more than 2000 mg a day but I try to keep it under 1500. If I don't I can feel the fluid retention. My bp has also increased. I know the meds are responsible for a lot, thankfully they will hopefully keep us rejection-free but their side-effects can be a real nuisance.
I am still seeing my transplant team every three months, it's only been a little over 9 months. I have an appointment on Wednesday.
JK

@hopeful33250 There is a club on the main road basically within walking distance from our home that is 24/7 but I need the pool and they do not have one. Plus I think I would be sort of creeped-out being alone there.
JK

@hopeful33250 I think these medigap plans are generally the same but I do not think mine covers that. I may check on that. Mine is run by Bankers Life, I don't know if that is national or regional.
JK

@lcamino Lynn, you are so right, the doctors know a lot but certainly not everything. I became so conscious of this when I went for so long without a diagnosis. At the same time my nephew was having brain problems. It was very scary. He's in his 40s with two little girls. My sister was so distraught. It took a long time to find out what the problem but finally after numerous doctors someone figured it out and he had brain surgery and has been great ever since, thank God.
Between his experience and mine I figure that is why they call medicine a "practice".
JK

@lcamino We can only be so thankful that we have such supportive families. It must have been difficult to make the choice to travel, but it is your life. With me the choice was difficult because I had a wonderful hospital and of course preferred to be there, but it looked like I could get transplanted sooner at Mayo.
I hope all goes well with your appointment. Please let us know how it went.
JK

@contentandwell The discount is offered through AARP's United Health Care so probably Banker's Life would not offer it, but it is worth checking into. Teresa