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This and That and Talk - My Transplant
Transplants | Last Active: Aug 14 9:57pm | Replies (1677)Comment receiving replies
@gaylea1
I have mild HE. Been in Rifaximin and Lactulose for 2 yrs. No more stomach problems...IBS and acid reflux. I havent had a unidentifiable HE attack and dont want one. Deathly afraid of losing my license. So, I have a friend who is my designated caregiver. We arranged for him to answer the phone 24/7 and to come and drive me home..call 911 etc. If I feel remotely bad..I call. His # is on my I'D bracelet too. Friends like Gary are priceless! I sure wouldn't want to hurt someone in an accident. He gets it... and has a backup too. I'm single and very lucky.
Replies to "@gaylea1 I have mild HE. Been in Rifaximin and Lactulose for 2 yrs. No more stomach..."
@jeanne5009 It’s great that being single you have a designated caregiver. I cannot imagine what people without someone like that do.
How wonderful that you have gone so long without an HE episode too. What is your MELD at this point? That long stretch I had without any was great, even though it was always in the back of my mind. How could it not be? Prior to being on Rifaximin and Lactulose did you have any episodes or did they put you on those as a precautionary measure?
I too was afraid of losing my license but I guess they believed me and my husband when we both told them that I never had one during the day that didn’t have what was basically a warning, and that I was generally quite cognizant —they checked on that at each appointment. I did wake up a few times with HE but of course then I would not leave the house.
JK
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@jeanne5009 thanks for sharing! I've been on lactulose and Rifaxamin for 2 years also yet lately I've been on the brink feeling that HE episode is around the corner. Since I had no choice in the matter of losing my license I've been dependent on others. As soon as I started on the lactulose the ministry automatically revoked it. I have tried to get my doctors to complete the paperwork but to no avail. They will not reinstate until I'm off lactulose post transplant. I agree that maybe it's for the best. I would hate to cause an accident. I'm lucky to have quite a few family members who remain accessible 24/7. I've been thinking about a medical bracelet. I always have emergency numbers in my wallet. My thoughts are with you.