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Transplants | Last Active: Oct 24 12:37pm | Replies (445)
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@contentandwell I can't believe how similar our stories are. I have had my share of HE episodes but it was my first that had me catatonic. They were close to putting me on life support and my children feared for my life. That was Nov 2017. I was placed on the wait list June 2017. Although my MELD score is 30 I am still waiting. I suffer from insomnia, itching, edema, nausea etc etc. After reading your story I have gained some faith and comfort that it will work out in the end. I am working out and trying to stay fit. Thank you so much for the inspiration to not give up.
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@gaylea1 HE episodes are the worst. For me, feeling like I was out of control of my mind was absolutely horrible. As I mentioned, my first was very minor. I always went to the local hospital for them, and they knew nothing there. If possible I would have gone to Boston, to my transplant center but the ambulance cost would have been prohibitive, and when I had one of the episodes that sent me to the hospital there is no way my husband could have driven me to Boston.
So you knew you had cirrhosis prior to your first HE episode. I didn't know I had cirrhosis until almost a year and a half later.
I am sure it will work out for you, and with a MELD of 30 probably pretty soon. May I ask what region you are in? I hope it's not one where the MELD scores tend to be much higher before a transplant. When I had mine, Boston was in the low 30s but currently it's at 28 which is exactly where I was.
I'm glad you are trying to stay fit, I am sure that is a huge help in your recovery. About a month after getting my new liver people were amazed at how well I looked. You will too.
JK