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

@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'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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@gaylea1

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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Thanks

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Hi Livertrex,
I had my transplant on August 18, 2017 and for the first few months i had to concentrate when climbing stairs especially after exercise. Occasionally while walking/running i had to catch myself from falling as it seemed things just didn't work like they did before. I was worried that i would never get my strength and balance back, and be able to do the things I did before the transplant. Over time i noticed that things really started to change. I was very active prior to the transplant and pushed myself afterwards but not to extremes. I set myself personal to keep me focused. A transplant is a major physical event and our bodies will recover as we challenge ourselves. I am wishing you good fortune and health as you continue your journey. Best regards

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@rogerhorton

Hi Livertrex,
I had my transplant on August 18, 2017 and for the first few months i had to concentrate when climbing stairs especially after exercise. Occasionally while walking/running i had to catch myself from falling as it seemed things just didn't work like they did before. I was worried that i would never get my strength and balance back, and be able to do the things I did before the transplant. Over time i noticed that things really started to change. I was very active prior to the transplant and pushed myself afterwards but not to extremes. I set myself personal to keep me focused. A transplant is a major physical event and our bodies will recover as we challenge ourselves. I am wishing you good fortune and health as you continue your journey. Best regards

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Thanks, that's exactly what I needed to hear. I need to push myself not to the extreme but to get out and work and walk I'm just afraid that I might fall. I'll carry my walking stick.

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Thank you very much. I had the same things happen after transplant. Like,I began to get better at everything. Somewhere around 3 yrs post,my body started to rapidly deteriorate. My mind,my body started to betray me. I believe I have perm. damage to my brain from the 2yrs. of HE..Best of luck to u.

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I'm sorry Rowdy. I'm thinking about you and I just pray that you will come out of this problem with your brain. Thank you for responding Rex

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@rowdyramsey

Thank you very much. I had the same things happen after transplant. Like,I began to get better at everything. Somewhere around 3 yrs post,my body started to rapidly deteriorate. My mind,my body started to betray me. I believe I have perm. damage to my brain from the 2yrs. of HE..Best of luck to u.

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@rowdyramsey I am sorry that you are having so many difficulties but if they started 3 years after transplant I doubt they are connected to the HE episodes before. If your current doctors will not address these problems and try to find a cause then please change doctors. You deserve better treatment than that.
By the way, I have not seen my hepatologist since my transplant. I think that once you have a new liver there is generally no need to. I know that if I need her or if I have any questions for her that she is there for me but I only sent her a couple of questions one time, through the portal.
JK

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