@rosemarya I just always assumed that you were sent to Mayo because there was not a transplant center near you, just like there are none in NH. You sure had some very scary times there, thank God it all turned out so well. I am sure that you, like me, express your gratitude every day, multiple times a day. My journey was as difficult as yours but shortly before my call things did go downhill so it was getting a bit difficult. The NP at the hepatologist did not think I would be called until at least November and I just could not imagine how I could make it that long. Thankfully I didn't have to since I got the call on September 22.
I too believe in miracles.
JK

@contentandwell - Jane, Sometimes it gets too emotional for me to remember and to relive that part of my life. That is why you will often see me using the term, 'complications'. Nine years ago, during the first 2 weeks of March, I was going through this. We had the option to return home and be reactivated on the transplant list, but I told my husband that I wanted to stay at Mayo. When I was listed for a kidney, too, I was sure that I made the right decision.
After I transplanted and returned home, I went to see my original transplant team. They were thrilled to see me, and to know that I was going to be okay. They said that I could come back as a patient anytime. Right now we are committed to making our annual trip to Rochester (about 13 hour drive that we prefer to flying) however, eventually as we get older we will be considering that.

I am happy that you are doing well. And - Yes, everyday is a gift.
Rosemary

@rosemarya I can totally understand the emotional part. I think that's why I remember so little from the time I got the call to the next day. I was perfectly lucid, not in the least having any type of HE at that point, but it's all a complete blur to me.
I am thankful that I was able to have my transplant in Boston, it makes the trips much easier. If I had ended up at Mayo we definitely would have been flying a lot.
My son was in Minnesota last week. One of his clients wanted to take him ice fishing so he went out there and they ice-fished on a big lake in quite an elaborate "hut" - he sent me a picture. I can't quite understand the appeal of ice fishing. Fishing sounds boring enough but to be out there on a freezing cold lake makes it worse. I think my son was glad for the experience but that he has no plans on doing it again.
JK

Sorry for the delayed response, but just now seeing your message. BHM is Birmingham, specifically UAB medical Center. It is listed by our insurance as a Blue Cross Center of Excellence, along with Oschner and May Jax. At our last visit, we told the GI we wanted to move forward with the evaluation for transplant. He would not recommend a specific center but we chose to go with Mayo in Jax. Our local hospital here (Baptist/Pensacola) is also affiliated with Mayo--not sure if that is any benefit or not for maybe getting some testing done locally. Reviewing our BcBs Federal insurance it looks pretty good as far as coverage. It also provided reimbursement for travel/lodging up to a certain number that I don't really recall at the moment. We also have a 39ft travel trailer so the option of moving it closer to Jax and setting it up at a long-term park could also be an option. As far as alcoholic Vs social drinker, I would say by husband was a very social drinker. He was a beer-only drinker and during the week drank a few most days but not always. Weekends were a bit heavier. Other than the liver disease, he is in great health so far. Unfortunately, when one of his first symptons appeared as swelling in his ankles/feet and eventually legs, his PCP dx was lympadenopathy and he was put on pumps every day and send for vascular studies which showed nothing but he was told to continue the pumps. When I noticed a change in his gait, occasional slurred speak, a bit of confusion/forgetfulness, when it was brought to his PCP's attention, he didn't seem concerned, but that's another story. 🙂 At least we are on the right path now.

You may want to consider the Gabriel House of Care as an option for your lodging. The facility is located on the Mayo Clinic campus and primarily serves out of town transplant patients. It was built with a gift from Jorge Bacardi who received his transplant at our facility. It was named the Gabriel House in honor of Mr. Bacardi's donor. Here's a link to their website.

@bamagirlgina the slurred speech, forgetfulness and confusion comes from the encephalopathy that comes along with liver disease. My husband's suffers from "brain fog" daily. It does get better after transplant I'm told.

True I do suffer from brain fog but I take lactuose to combat that.

@bamagirlgina That's great that your insurance will provide reimbursement for travel and lodging. I wonder if they would do that if you had a transplant center close by but chose to use a different one. I had four transplant centers somewhat close by -- from 55 miles to 70 miles away -- but considered using Mayo either in Jacksonville or Minnesota because I could get a transplant at either with a lower MELD. I doubt in that case that reimbursement would be provided.
When I was looking into Mayo they would take test results from Mass General (MGH). Of course MGH is also a highly regarded transplant center, but if there is an affiliation with Mayo at your local hospital then perhaps. There is a hospital in Nashua NH, about 20 miles away that I thought had an affiliation with MGH but it's not a true affiliation. I am not sure just what it is but I do not think they would consider any testing from there.
It does not sound as if your husband was an alcoholic so perhaps he won't have a six month waiting period. If he just stops drinking immediately as I did then that may be enough.
I had ankle and foot swelling but it was primarily when I traveled. I think flying did it and then of course eating in restaurants where the food was more highly salted than what I prepare at home. It would take me about two to three weeks for the fluid retention to go down.

Do you think the "change in his gait, occasional slurred speak, a bit of confusion/forgetfulness" were actually minor episodes of HE? If so I presume they will put him on lactulose and perhaps xifaxan. Xifaxan was great for me but it is quite costly. Initially I asked the hepatologist if I could go back and forth between the two, using the xifaxan only if I was going to be going on vacation or something and she said yes, but my husband felt it was worth the cost to keep me cognizant. I was on just xifaxan for almost a year with no HE episodes and then got one following a difficult ablation and having norovirus, and due to being sick, not taking my meds as regularly as prescribed. All things that can supposedly contribute to having an episode (my son referred to it as "the perfect storm") but they felt that it was due to my liver decompensating more and put me on lactulose along with the xifaxan.
JK

@jodeej I never had general brain fog, but definite episodes. Most of the time I was able to live my normal life. It ends immediately after transplant, your new liver filters out the toxins so thankfully those problems are history. Lactulose helps but xifaxan helped me more and with none of the side effects of lactulose.
JK

@contentandwell our insurance reimburses us for hotel and travel even though we have a transplant center near us. As long as we use a "center of excellence" we are covered.

We talked to my husband's doctor about his cognition and we are holding off on the lactose at this time. He may need it in the future, but so far so good, thank goodness! That stuff sounds terrible!