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Sun, Jul 14 4:04pm · Liver transplant support group in Transplants

@jim1208 I have signs of HE at 11. Shaking hands at times, easily off-balance, slowdown in speech, difficult word retrieval. My worst episode was in December 2017. Was hospitalized after a bout with norovirus – total lack of memory. My MELD has gone down since then. No serious attacks since then, just the symptoms.

Fri, Jul 12 7:54pm · Liver transplant support group in Transplants

I’ve learned so much. The group noticed my trembling hands and suggested I look into lactulose. We have guest speakers sometimes. New transplant patients come while they’re still hospitalized. Caregivers ask a lot of questions. It’s so nice to be able to talk to and listen to a group that totally understand. We laugh a lot.

I’m very glad to be at Mayo and really like my team.

Fri, Jul 12 9:40am · Liver transplant support group in Transplants

I’m at Mayo Rochester. I just started year three on the list. My MELD has been all over the place from my current 11 to 26. At my last check up my doctor stopped my driving due to “overt signs” of Encephalopathy. I have been on medical disability through my employer since January 2nd. Luckily I live in the twin cities and attend a weekly support group for people pre- and post-transplant at the U of M. A little harder now I’m not allowed to drive. I have no idea how long it will be before I’m eligible for transplant.

Thu, Jan 3 5:10pm · Xifaxan in Digestive Health

@jackiem95 I’m taking Xifaxan to prevent hepatic encephalopathy, a side effect of advanced liver disease. It helps prevent the buildup of ammonia in my brain.

Thu, Jan 3 3:43pm · Xifaxan in Digestive Health

@drpepper I’ve been taking Xifaxan for just over a year and a half. It’s something my insurance will not cover without an accompanying Lactulose prescription. My hepatologist says it works better than lactulose, but hey it’s so expensive I’m happy to take the lactulose too.

Oct 16, 2018 · It's not all about the MELD Score in Transplants

I’m glad it’s rising, too. My appointments are every six months, but they’ve got me coming in December this time rather than January. I go to Rochester and it’s only 1.5 hours.

Oct 16, 2018 · It's not all about the MELD Score in Transplants

@rosemarya I’ve been tired from the start. However, the exhaustion came upon me this summer. I teach 24 hours per week and seem to do nothing but rest so I can work!

Been on the list since June 2017. Had a MELD of 26 at one point.

Oct 15, 2018 · It's not all about the MELD Score in Transplants

Got my three month MELD update today: up from 11 to 16. Makes me feel better as I was concerned it wouldn’t change much. Dealing with exhaustion now – resting in all my spare time so I can keep going to my part-time job. Thinking about going on disability through my employer.