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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@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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@contentandwell

@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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@contentandwell Directly after transplant surgery I was visited by my hepatologist daily. Then weekly, then once a month and now every three months. I still have blood tests done every 2 weeks. I expect when I reach my 1 year mark in late November he will ask to see me every 6 months. I'm not sure when the yearly visits start after that.

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@gaylea1

@contentandwell Directly after transplant surgery I was visited by my hepatologist daily. Then weekly, then once a month and now every three months. I still have blood tests done every 2 weeks. I expect when I reach my 1 year mark in late November he will ask to see me every 6 months. I'm not sure when the yearly visits start after that.

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@gaylea1 That’s different from my care, after transplant I was seen very regularly by the transplant department but after my hospital discharge I no longer saw my hepatologist. My hepatologist did visit me while I was in the hospital.
I’m not sure why a patient would continue to need to be seen by a hepatologist after transplant. What is the reason for that?
JK

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@contentandwell

@gaylea1 That’s different from my care, after transplant I was seen very regularly by the transplant department but after my hospital discharge I no longer saw my hepatologist. My hepatologist did visit me while I was in the hospital.
I’m not sure why a patient would continue to need to be seen by a hepatologist after transplant. What is the reason for that?
JK

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@contentandwell I think they follow up with my blood tests to make sure my levels are all correct. Then they discuss it with me and take a look at my medication. Other than that I'm not sure why.

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@gaylea1

@contentandwell I think they follow up with my blood tests to make sure my levels are all correct. Then they discuss it with me and take a look at my medication. Other than that I'm not sure why.

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@gaylea1 I’ve found that different transplant centers have different protocols. I have my blood tests very regularly, down to every two months now, but my transplant team are the ones who monitor all of that.
They will not get involved with areas that fall to your PCP though. I think they feel that if you have a good PCP he or she is better equipped to handle other things, plus they do not want to step on the toes of the PCPs. That last is my own supposition.
JK

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@rowdyramsey, I'm glad that you are consulting with your doctor and your transplant team about issues you continue to have with memory loss, balance and fatigue. As others have mentioned, it is possible that time is the main ingredient that you need. It is hard to be patient, so I thought I'd share links for various articles shared on Connect about how to improve memory and balance. They may or may not apply directly with your situation.

Living with Mild Cognitive Impairment (MCI) is a blog written by Mayo Clinic experts. I think you'll find many of their blog posts of interest:
https://connect.mayoclinic.org/page/living-with-mild-cognitive-impairment-mci/
Here are a few that deal specifically with memory
– When is memory loss a problem? When in doubt check it out! https://connect.mayoclinic.org/page/living-with-mild-cognitive-impairment-mci/newsfeed-post/when-is-memory-loss-a-problem-when-in-doubt-check-it-out/
– Revisiting Brain Exercises https://connect.mayoclinic.org/page/living-with-mild-cognitive-impairment-mci/newsfeed-post/revisiting-brain-exercises/

About balance
– Movement options: Tai Chi introduction! https://connect.mayoclinic.org/page/living-with-mild-cognitive-impairment-mci/newsfeed-post/movement-options-tai-chi-introduction/
– Balance issues and hearing loss https://connect.mayoclinic.org/discussion/balance-issues-and-hearing-loss/?pg=1#comment-327376 Nice tips from a member in the hearing loss group that might help.

Ramsey, Let me know if any of these articles or tips helped.

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@colleenyoung

@rowdyramsey, I'm glad that you are consulting with your doctor and your transplant team about issues you continue to have with memory loss, balance and fatigue. As others have mentioned, it is possible that time is the main ingredient that you need. It is hard to be patient, so I thought I'd share links for various articles shared on Connect about how to improve memory and balance. They may or may not apply directly with your situation.

Living with Mild Cognitive Impairment (MCI) is a blog written by Mayo Clinic experts. I think you'll find many of their blog posts of interest:
https://connect.mayoclinic.org/page/living-with-mild-cognitive-impairment-mci/
Here are a few that deal specifically with memory
– When is memory loss a problem? When in doubt check it out! https://connect.mayoclinic.org/page/living-with-mild-cognitive-impairment-mci/newsfeed-post/when-is-memory-loss-a-problem-when-in-doubt-check-it-out/
– Revisiting Brain Exercises https://connect.mayoclinic.org/page/living-with-mild-cognitive-impairment-mci/newsfeed-post/revisiting-brain-exercises/

About balance
– Movement options: Tai Chi introduction! https://connect.mayoclinic.org/page/living-with-mild-cognitive-impairment-mci/newsfeed-post/movement-options-tai-chi-introduction/
– Balance issues and hearing loss https://connect.mayoclinic.org/discussion/balance-issues-and-hearing-loss/?pg=1#comment-327376 Nice tips from a member in the hearing loss group that might help.

Ramsey, Let me know if any of these articles or tips helped.

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Thank you. I’m grateful for all the tips and suggestions

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@contentandwell

@gaylea1 I’ve found that different transplant centers have different protocols. I have my blood tests very regularly, down to every two months now, but my transplant team are the ones who monitor all of that.
They will not get involved with areas that fall to your PCP though. I think they feel that if you have a good PCP he or she is better equipped to handle other things, plus they do not want to step on the toes of the PCPs. That last is my own supposition.
JK

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Thank you

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@gaylea1

@contentandwell I think they follow up with my blood tests to make sure my levels are all correct. Then they discuss it with me and take a look at my medication. Other than that I'm not sure why.

Jump to this post

Thanks

REPLY
@contentandwell

@gaylea1 That’s different from my care, after transplant I was seen very regularly by the transplant department but after my hospital discharge I no longer saw my hepatologist. My hepatologist did visit me while I was in the hospital.
I’m not sure why a patient would continue to need to be seen by a hepatologist after transplant. What is the reason for that?
JK

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I also was seen reg. I’m 4 1/2 yrs post.maybe not followed by a hepetologist,but “the liver team.” The liver coordinator is what I believe they are called!

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