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

@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.

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Thanks

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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

Jump to this post

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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@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

Jump to this post

It started right after the transplant but by 3 yrs it had become so much worse! Thanks again for all your responses. You have been very helpful.

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@rowdyramsey, I hope that you will have a positive visit with your doctor. I look forward to hearing from you about how this issue can be addressed. You are always welcome here whether you feel good, or not so good! On Connect you are never alone. Rosemary

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@rosemarya

@rowdyramsey, I hope that you will have a positive visit with your doctor. I look forward to hearing from you about how this issue can be addressed. You are always welcome here whether you feel good, or not so good! On Connect you are never alone. Rosemary

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Has anyone had side effects from entresto that caused severe gastro upset. My husband and I went to Mayo in August and they increased the dose to 200 mg per day along with changing him from Coreg to Metroprolol. After that severe stomach upset. They have tested him for all the "bugs" out there and have treated him with flagyl and Cipro but it has not gone away totally yet.

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