Dizzy still after my liver transplant

Posted by livertrex @livertrex, Oct 4, 2019

Does anybody else feel light-headed and get very dizzy. I'm having to use a cane pretty wobbly. I had my transplant on August 22nd. Thought this would all go away by now. It's the same feeling I had before I had my transplant with my old liver. Please respond thanks everybody

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@rowdyramsey

Can someone help me find out how I can ask a question? I only see how to reply to messages. Can’t find a link that says.”ask your question here” please,anyone? I suffered 2-3 yrs of daily hepatic encephalopathy.my ammonia levels ran from 175-210 daily. I believe I suffer permanent brain damage from this. It’s getting worse and worse. Transplant date was July,2015. Can someone tell me how I can ask others this question?

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@rowdyramsey I see that @rosemarya has already answered your question, but I just wanted to say, that I too had HE episodes. I was transplanted in September 2016. For a very short time after that, I still didn't feel totally back to being myself but I did quickly. My HE episodes were much less frequent than yours. After my hepatologist prescribed xifaxan I had almost a year of no episodes.

What is happening that makes you feel you have brain damage? If it's getting worse I doubt it would be from HE episodes prior to transplant.
JK

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@rowdyramsey

Can someone help me find out how I can ask a question? I only see how to reply to messages. Can’t find a link that says.”ask your question here” please,anyone? I suffered 2-3 yrs of daily hepatic encephalopathy.my ammonia levels ran from 175-210 daily. I believe I suffer permanent brain damage from this. It’s getting worse and worse. Transplant date was July,2015. Can someone tell me how I can ask others this question?

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@rowdyramsey, Here is how to start a new discussion. This is a good question and I encourage you to begin a new discussion about "Hephepatic encephalopathy after liver transplant.
All you need is a Title, and an opening question. If you need more assistance let me know.
Here are the instructions:
https://connect.mayoclinic.org/get-started-on-connect/#start-new-discussion
Rosemary

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@rowdyramsey

Can someone help me find out how I can ask a question? I only see how to reply to messages. Can’t find a link that says.”ask your question here” please,anyone? I suffered 2-3 yrs of daily hepatic encephalopathy.my ammonia levels ran from 175-210 daily. I believe I suffer permanent brain damage from this. It’s getting worse and worse. Transplant date was July,2015. Can someone tell me how I can ask others this question?

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@rowdyramsey I suffered from HE episodes prior to transplant. My first (and worst) was when I was diagnosed with liver disease. I fell into a coma and life was touch and go for about 3 weeks. For 4-5 months i lost my memory and couldn't differentiate what day it was even month what it was. I forgot my address, telephone number and all other important information. Once wait listed my HE episodes lessened but I was taking lactulose and rifaxamin to counter act them. This eventually passed but I have dizzy spells now of and on. I received my liver Nov 28th 2018. I am just now able to remember things but the past 3 years are a complete blur. Be easy on yourself. Remember everyone heals differently and some people take longer than others.

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@gaylea1

@rowdyramsey I suffered from HE episodes prior to transplant. My first (and worst) was when I was diagnosed with liver disease. I fell into a coma and life was touch and go for about 3 weeks. For 4-5 months i lost my memory and couldn't differentiate what day it was even month what it was. I forgot my address, telephone number and all other important information. Once wait listed my HE episodes lessened but I was taking lactulose and rifaxamin to counter act them. This eventually passed but I have dizzy spells now of and on. I received my liver Nov 28th 2018. I am just now able to remember things but the past 3 years are a complete blur. Be easy on yourself. Remember everyone heals differently and some people take longer than others.

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I have instant and short term memory loss. I can’t continue thought in my brain because I forget. Instantly what I’m thinking about. I could be a word and I will forget what word I’m trying to say. I leave food burning in a stove about 20 days out of 30. My son will say I want a burger from Burger King. I know it and understand it fully. But what happens? I’m convinced he said mc.donalds. Happens daily! I forget mid sentence what I’m talking about. Not just forgetting what I wanted to say back , but I forget the entire subject..My body has not been right ever since transplant. It takes me 2 hours to get out of bed and get my thoughts together. I suffer servers intestinal pai for hrs. Every morning. I have zero energy. I mean none! Zapped the heck out. I can’t seem to eat anything at all. The day I had my transplant I weighed 420lbs. I now weigh 159. I can’t stop losing cause I have no appetite. I feel like every day is a struggle to get threw. Any idea what’s wrong with me? Yeah,I know<call a doctor. Well,I have. We will see if I get the help I need.

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@gaylea1

@rowdyramsey I suffered from HE episodes prior to transplant. My first (and worst) was when I was diagnosed with liver disease. I fell into a coma and life was touch and go for about 3 weeks. For 4-5 months i lost my memory and couldn't differentiate what day it was even month what it was. I forgot my address, telephone number and all other important information. Once wait listed my HE episodes lessened but I was taking lactulose and rifaxamin to counter act them. This eventually passed but I have dizzy spells now of and on. I received my liver Nov 28th 2018. I am just now able to remember things but the past 3 years are a complete blur. Be easy on yourself. Remember everyone heals differently and some people take longer than others.

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You seem to know what it was like. I had the same symptoms. Mine lasted every day for over 2 yrs. Lactlose was my breakfast,lunch and dinner! The reason I think there’s perm. brain damage is because the length and duration of my daily episodes

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@rowdyramsey

You seem to know what it was like. I had the same symptoms. Mine lasted every day for over 2 yrs. Lactlose was my breakfast,lunch and dinner! The reason I think there’s perm. brain damage is because the length and duration of my daily episodes

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I took a lot of lactulose before my liver transplant because of dizziness.
Post transplant dizziness is similar, but this is dizziness is hard to
describe. Everything moves fast around me. I don&apos;t think it the high
ammonia levels will cause brain damage. What kind of problems are you
having and why do you think might be brain damage.

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@rowdyramsey

Thank you so much. By the way,I was 47 when I had my transplant. I’m now 51.

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I am 61. My hip c was in 2006. I was on ribiviarn and interferon for 9 months and was determined clean. I was categorized as stage 4 cirrosis. I went on lactulose at that time and had several bands on my throat. Ithey discovered cancer tumor in Feb and a transplant in Aug. The next hurdle is to get rid of this dizziness. My mind is very very sharp.

I hope to find an answer soon. I will the new be back to my old self. I hope that your problem goes away soon.

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@rowdyramsey

You seem to know what it was like. I had the same symptoms. Mine lasted every day for over 2 yrs. Lactlose was my breakfast,lunch and dinner! The reason I think there’s perm. brain damage is because the length and duration of my daily episodes

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My experience so far is that the HE episodes do diminish but are not completely gone after transplant. Every now and the I revert to lactulose but that is only my experience.

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@rowdyramsey

I have instant and short term memory loss. I can’t continue thought in my brain because I forget. Instantly what I’m thinking about. I could be a word and I will forget what word I’m trying to say. I leave food burning in a stove about 20 days out of 30. My son will say I want a burger from Burger King. I know it and understand it fully. But what happens? I’m convinced he said mc.donalds. Happens daily! I forget mid sentence what I’m talking about. Not just forgetting what I wanted to say back , but I forget the entire subject..My body has not been right ever since transplant. It takes me 2 hours to get out of bed and get my thoughts together. I suffer servers intestinal pai for hrs. Every morning. I have zero energy. I mean none! Zapped the heck out. I can’t seem to eat anything at all. The day I had my transplant I weighed 420lbs. I now weigh 159. I can’t stop losing cause I have no appetite. I feel like every day is a struggle to get threw. Any idea what’s wrong with me? Yeah,I know<call a doctor. Well,I have. We will see if I get the help I need.

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I do that too but it's getting better. My kids tell me one thing but I hear something else. It's all just adapting to our circumstances. I have also experienced the trouble of waking feeling disoriented but lay down for an hour to think things through rationally. I still am easily fatigued. I am only 9 months post transplant so I'm hoping for better days going forward.

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@gaylea1

I do that too but it's getting better. My kids tell me one thing but I hear something else. It's all just adapting to our circumstances. I have also experienced the trouble of waking feeling disoriented but lay down for an hour to think things through rationally. I still am easily fatigued. I am only 9 months post transplant so I'm hoping for better days going forward.

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Thank u!

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