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Liver transplant - Let's support each other
What topics do people who are waiting for a liver transplant want to talk about? Who has had a liver transplant and wants to talk about?
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@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.
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2 Reactions@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.
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2 ReactionsI live 3. 5 hours from my transplant center... The Dr's here let him know when I'm in the hospital
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2 ReactionsThe Dr. Said my amonia levels have come down a lot since i came in...I've had really bads one's where I'm in hospital 2 weeks in another town with a bigger hospital. And i don't know how to use phone
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2 Reactions@tgshomes The diagnosis I was given was NASH. I had one severe HE episode 7 months prior to transplant. I woke up one morning very incoherent and combative about getting dressed and going to work that day. I tried to text my work supervisor but could only type nonsense into my cell phone. Luckily my daughter was visiting and called my husband to come home. I was hospitalized for 3 days but do not remember the first 2 days. My ammonia level was too high and affected my brain. They increased my Lactulose and brought the ammonia level down. The downside of the Lactulose was having severe diarrhea and needed to wear Depends. I was no longer allowed to drive. I also noticed short term memory issues. My husband was my primary caregiver and thank goodness he would remember what the medical staff at Mayo in Jacksonville would explain to us before and after the transplant. I was also very fatigued and would fall asleep frequently each day. As the months went on my health declined very quickly with 3 more hospitalizations due to kidney failure. I also started to have ascites and needed a paracentesis once a week to remove between 8 to 9 1/2 liters of fluid. The week prior to my liver transplant I was again released from the hospital and became very weak especially in my legs and was barely eating anything. I also had edema in my legs and needed shoes 2 sizes larger than I normally wore. I was hospitalized again after a week out of the hospital with a MELD of 44, over the 6 to 40 scale that we were told that there was. I did receive the liver transplant that night.
Since my liver transplant 8 months ago, most all of these symptoms went away. I do feel the HE episode and memory issues did create some changes to my brain. I have trouble remembering a word to use in the middle of sentences frequently. It takes me a few seconds and I usually can recall the correct word.
I hope your father receives a liver very soon. You sound like a wonderful son and an asset as a caregiver along with your mother. My children stepped up when we needed their help during my illness and appreciated all they did for us.
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3 ReactionsThank you guys so much. We are just trying to get some answers here and it’s just one bad situation after the other. I’m hoping they will put him on dialysis and hoping that will help, even if it’s just a little. Seeing him struggle is so heartbreaking. Thank you again to everyone helping, it means a lot and is helping more than you guys know!
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2 ReactionsI take 5mg of prednisone as well, but the side effects are huge for me. The nurse told me I wouldn't notice, but can't sit still, sleep or get physically comfortable--my fingers and toes ache. Hopefully when I see the surgeon on Thursday she will have a better solution.
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3 Reactions@racing212 Kudos to your foreman for knowing enough to bring you in. I am thinking it must not have been that severe an episode if today you are able to be on the computer and communicating. When my episodes were severe enough for me to end up in the hospital it was a couple of days before I was able to communicate with any sense on my iPad, I sometimes couldn't even remember how to get on it!
Take care and get better quickly, it sounds as if this will be a brief stay in the hospital.
JK
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1 Reaction@racing212, I hope and pray that this is a minor episode for you. Hugs to your foreman for his quick action to get you in for treatment.
I don't know whether you live near your transplant center for treatment, but if not, I hope that they are involved and will be able to figure out what is causing these episodes.
I have not had any HE episodes so I can only try to imagine what you are going thru.
Hugs.
I'm in hospital now because i had an he episode yesterday at the shop..my forman broight me in
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