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Are there any other pre-liver transplant caregivers out there?
Hi,
I'm JoDee and my husband is on the registry waiting for a liver transplant. I'm feeling stressed and would love to have someone to talk to that gets what is going on with us. We live 5 hours from Rochester, so I can't attend any of the support groups there and there aren't any near us. Any suggestions?
Thank you!
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Hi JoDee. How long has your husband been on the list? I've been on a list for the past 8 months and the stress and side effects are wearing me down. My MELD score is 26 and waiting entails no travel. How do you cope now?
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1 ReactionThank you for giving me some hope. I am having a terrible time with my meds and my stomach. I am pre-op on a list (8 months now). How did you deal with the stress of waiting?
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1 ReactionYou 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.
http://www.gabrielhouseofcare.org/-
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2 Reactions@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.
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1 Reaction@gaylea1 We found out he had liver cancer May 30 if last year and went for his initial work-up to get listed the first week of July. Thankfully both our families and our kids are closer to Mayo than we are so we visit them. We're both working so that helps too. Though I'm not sure how much longer my husband will be as his"brain fog"is worsening and he tires quickly. It is stressful but for me prayer, yoga and going to the gym or for walks help. So does spending time with friends.
I hope this helps! Hugs!
JoDee
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1 ReactionTrue I do suffer from brain fog but I take lactuose to combat that.
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1 Reaction@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
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1 Reaction@gayleaf I know how the stress can be but stay strong. The time will come. Do you know the average MELD score at which transplants occur in your region? In my region, New England, it is in the low 30s. CA and NY are a bit higher but everywhere else is either the same or lower. I was fortunate at getting transplanted at 28 in Boston, probably due to being blood type B.
Stay strong. For me the worst side-effect, up until the end, was having an occasional HE episode. That was miserable but xifaxan helped it tremendously.
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!
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