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

IMG_20190913_084947

@livertrex

. I guess the best way to explain my be like getting out of bed in the
morning and bumping into everything because you can't quite get your
balance and everything is kind of moving around you. I know when I ride in
the car with my wife and she's driving everything's going to by me at
hundred miles an hour is frustrating.

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@livertrex, and All.
I want to bring this discussion back to the topic of dizziness after transplant. I am not medically trained, but only a patient like all of you. I honestly don't recall dizziness because my transplant was 10 years ago. However, I decided to look thru my Going Home After Transplant Booklet and one of the listed reasons to call your transplant coordinator is " Feeling unusually weak ot light-headed."
@livertrex, you are young with your transplant, and your body is still trying to get adjusted. I encourage you to call your coordinator tomorrow. You might need to have some repeated labs, or medication adjustment and then more labs. (that is my experience)

Do you have a post transplant coordinator that you can call? Please let me know what you find out?

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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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@rosemarya

@livertrex, and All.
I want to bring this discussion back to the topic of dizziness after transplant. I am not medically trained, but only a patient like all of you. I honestly don't recall dizziness because my transplant was 10 years ago. However, I decided to look thru my Going Home After Transplant Booklet and one of the listed reasons to call your transplant coordinator is " Feeling unusually weak ot light-headed."
@livertrex, you are young with your transplant, and your body is still trying to get adjusted. I encourage you to call your coordinator tomorrow. You might need to have some repeated labs, or medication adjustment and then more labs. (that is my experience)

Do you have a post transplant coordinator that you can call? Please let me know what you find out?

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I do have a transplant coordinator. And I will give them a call tomorrow. Thanks for your concern and God bless you.

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@livertrex

I do have a transplant coordinator. And I will give them a call tomorrow. Thanks for your concern and God bless you.

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

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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 -You did it right, already!
For additional help – Here is a link to "Get Started on Connect". You will find a list of easy to read How To's.
https://connect.mayoclinic.org/get-started-on-connect/
I think you might consider starting a new discussion in the transplant group or pvisit the Liver transplant support group ere you will meet other liver transplant patients.whhttps://connect.mayoclinic.org/discussion/liver-support-group/
Again – I will help you if let me know.

Here are some discussions where members have discussed Hepatic Encephalopathy (HE) To make a reply/ask a question, you can click the reply box at the beginning of the discussion, or you will see a reply box at the bottom of the page . You just start texting in that box. If you want to address a particular memner, then you will use athei @name like I used at the beginning of this reply to you. Did you get a notification?
You are welcome to participate anywhere, or to begin a new discussion. Let me know if you need more help.
Groups > Digestive Health > Elevated ammonia levels
https://connect.mayoclinic.org/discussion/elevated-ammonia-levels/
Groups > Digestive Health > Hepatic encephalopathy
https://connect.mayoclinic.org/discussion/hepatic-encephalopathy/
Groups> Transplants > Liver transplant support group
https://connect.mayoclinic.org/discussion/liver-support-group/

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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'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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