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Posts (275)

1 day ago · Liver transplant support group in Transplants

I had all these symptoms (regarding women) except the ascites.. It was brutal.

1 day ago · Liver transplant support group in Transplants

My HE episodes included confusion, lack of awareness (time, place, situation) dizziness (including falling or fainting), irritability, and fatigue. Combined they made me one hot mess lol…When I had my most severe HE episodes I also lost consciencesness. (sp?).

5 days ago · Liver transplant support group in Transplants

@rowdyramsey I almost lost my life during the first HE episode. The first 48 hours were just touch and go as to whether I would survive it. I was hospitalized in intensive care for a week then they moved me to a private room for extensive care. I think that would qualify as pretty severe. The next 6 months are a blur, no memory of that time or awareness to my surroundings. Subsequent episodes landed me in hospital a week at a time. I took lactulose (30 ml) every four hours and then I also took rifaximin. I didn't suffer from a lot of diahrea but made sure I drank lots of water to keep hydrated. I now feel a bit foggy at times but my memory is pretty good and I tend to make lists and enter everything into my calendar.

Sat, Nov 9 10:41pm · Liver transplant support group in Transplants

@contentandwell I am so sorry you had such bad experiences. My first, and worst HE episode is what led me to diagnosis. My husband came home early from work to find me incoherent. He insisted I go to the hospital but I thought I was fine. He called my daughter and with much resistance on my part they called an ambulance. I don't recall going to the hospital or much of anything for 3 weeks. My son flew in from Ottawa as they thought I might not make it. The nurses were kind and concerned. I had several nurses check in on me as their shifts changed and they would visit with me (so I'm told). I didn't recognize many but they all knew me. I was indeed fortunate. I don't know if your hospitals have this procedure but when my nurses changed they had a board where they would write their name and the date. My family were super impressed with all the nurses and aides.

Sat, Nov 9 7:00pm · Liver transplant support group in Transplants

@contentandwell I was the same. I had to rely on my contacts list to call anyone. The nurses were a great help. I kept losing my phone in a tangle of bedsheets and IV lines. They would always find it for me. My tablet lay on my side table always getting entangled in power lines. I had my devices charging and unplugging them to get to the bathroom was always a struggle. I laugh now thinking of all the predicaments I got myself into.

Sat, Nov 9 6:43pm · Liver transplant support group in Transplants

@racing212 I'm happy to hear your ammonia levels are down. This is a victory! Be easy on yourself. If you have troubles with the phone ask a nurse for assistance. I was in the hospital for 3 weeks and when i forgot something or needed help I always asked a nurse. They are usually very happy to assist.

Sat, Nov 9 5:08pm · What are the financial challenges after transplant with medicare? in Transplants

@willie0027 hi there. Just a note on your question as to how long the numbness lasts on your stomach. I am coming up to my 1 year anniversary and I still can't feel anything across my abdomen. The doctors told me that I may never get back any sensation in my abdomen as nerves may have been cut during surgery. I can run my fingernails across my stomach and not feel a thing. Not everyone has this but I do. It's very strange but a small price to pay after surgery.