1. < Transplants

Liver transplant - Let's support each other

Posted by lmctif @lmctif, Oct 29, 2018

What topics do people who are waiting for a liver transplant want to talk about? Who has had a liver transplant and wants to talk about?

Interested in more discussions like this? Go to the Transplants Support Group.

athenalee | @athenalee | Feb 2, 2021
In reply to @contentandwell "What an excellent article @athenalee I am realizing more and more that there are many problems..." + (show)
@contentandwell

What an excellent article @athenalee I am realizing more and more that there are many problems associated with immunosuppressants. That article is somewhat disconcerting but I would rather know what I am dealing with than be ignorant of it, particularly when I have a number of these side-effects -- hypertension, osteoporosis, hyperlipidemia -- but until recently I had no idea that my immunosuppressants caused them. I developed diabetes prior to knowing that I had liver problems (NASH) and interestingly, now it seems to be in remission. My numbers are always very good.

Thank you for sharing that article.
JK

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What really struck me about the article is that I wasn’t told about these potential diseases that are so prevalent post transplant. My transplant team is awesome, and our nutritionist informative. But I think it’s a disservice to have not been fully transparent. I’ve never had high blood pressure, high lipid counts, or high glucose until post transplant. I’m now being even more diligent on healthy eating and exercise so my labs are improving. I’m glad your diabetes is in remission!

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1 reply
JK | @contentandwell | Feb 1, 2021
In reply to @athenalee "Hello and thank you. Fortunately not on prednisone...allergic. But, I’ve read that Tacrolimus and other calcineurin..." + (show)
@athenalee

Hello and thank you. Fortunately not on prednisone...allergic. But, I’ve read that Tacrolimus and other calcineurin inhibitors are linked to osteoporosis, but how seems to be a question. I offer the attached article for the group, as I found it one of the best on post transplant complications.

Jump to this post

What an excellent article @athenalee I am realizing more and more that there are many problems associated with immunosuppressants. That article is somewhat disconcerting but I would rather know what I am dealing with than be ignorant of it, particularly when I have a number of these side-effects -- hypertension, osteoporosis, hyperlipidemia -- but until recently I had no idea that my immunosuppressants caused them. I developed diabetes prior to knowing that I had liver problems (NASH) and interestingly, now it seems to be in remission. My numbers are always very good.

Thank you for sharing that article.
JK

REPLY
1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Feb 1, 2021
In reply to @jackie421blfdgurl "Thank you for your reply. This site looks like a real saver for me since the..." + (show)
@jackie421blfdgurl

Thank you for your reply. This site looks like a real saver for me since the
Only one to talk to was my doctor and some of the liver team members. My
Hospital is in NY and I am in Jersey so
It takes some planning ahead. Thanks
Again. Jackie

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@jackie421blfdgurl, I am in Kentucky and my transplant Center in in Minnesota (750 miles). I can understand how the distance and travel planning can complicate things. I rely on my local primary care doctor who is willing to work in cooperation with my Transplant team at Mayo in MN.
Like you, I found myself at home and alone in a world on non-transplant family and friends. I find great comfort and companionship in the interaction with others who are like me on Connect. I enjoy learning from each other and supporting each other. I hope that you will feel the same.
I am sharing a link to some immunosuppressant medicine and side effects for you to look at. It is going to be your doctors who regulate and advise you about your meds.
Immunosuppression: Watching For and Managing Side Effects
https://connect.mayoclinic.org/page/transplant/newsfeed-post/immunosuppression-watching-for-and-managing-side-effects/
When is your MRI? Is it local? or do you need to travel to the transplant center?
What is the status of your swelling and pain?

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2 replies
tgm512500 | @tgm512500 | Feb 1, 2021
In reply to @athenalee "Hello and thank you. Fortunately not on prednisone...allergic. But, I’ve read that Tacrolimus and other calcineurin..." + (show)
@athenalee

Hello and thank you. Fortunately not on prednisone...allergic. But, I’ve read that Tacrolimus and other calcineurin inhibitors are linked to osteoporosis, but how seems to be a question. I offer the attached article for the group, as I found it one of the best on post transplant complications.

Jump to this post

This was very helpful

Thanks

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1 reply
athenalee | @athenalee | Feb 1, 2021
In reply to @contentandwell "@athenalee If you are on prednisone then you do need to be conscious of the possibility..." + (show)
@contentandwell

@athenalee If you are on prednisone then you do need to be conscious of the possibility of getting osteoporosis. I have it now from having to take prednisone. I'm not sure, but I don't think the other immunosuppressants are a cause of osteoporosis. It is amazing though how many things can be caused by them. I now also have hypertension, sometimes, and high cholesterol which I believe is another side-effect of immunosuppressants.
JK

Jump to this post

Hello and thank you. Fortunately not on prednisone...allergic. But, I’ve read that Tacrolimus and other calcineurin inhibitors are linked to osteoporosis, but how seems to be a question. I offer the attached article for the group, as I found it one of the best on post transplant complications.

Shared files

Livertransplant-part3 (Livertransplant-part3.pdf)

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3 replies
JK | @contentandwell | Feb 1, 2021
In reply to @athenalee "I’ve always firmly believed in the importance of learning how to, and practicing, eating well, exercising,..." + (show)
@athenalee

I’ve always firmly believed in the importance of learning how to, and practicing, eating well, exercising, and using natural herbs/supplements to remain as healthy as possible. This worked well until I turned 60 and was shortly thereafter diagnosed with PBC/liver cirrhosis. Then my research became focused on my disease and learning natural ways to supplement ursodial to help keep my liver functioning. So, since my transplant a whole new realm of research is required! Including, of course, drug interactions and side effects management, and how to avoid getting diabetes, hypertension, osteoporosis, and other diseases common post transplant. I do believe it’s vital that I try my best to be healthy and to know the best path to achieve this. Plus, for me anyway, gaining knowledge keeps me from being depressed and keeps my mind active and away from focusing on current health issues, Covid, not finding employment, etc.

Jump to this post

@athenalee If you are on prednisone then you do need to be conscious of the possibility of getting osteoporosis. I have it now from having to take prednisone. I'm not sure, but I don't think the other immunosuppressants are a cause of osteoporosis. It is amazing though how many things can be caused by them. I now also have hypertension, sometimes, and high cholesterol which I believe is another side-effect of immunosuppressants.
JK

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1 reply
athenalee | @athenalee | Feb 1, 2021
In reply to @rosemarya "@athenalee, Knowledge and self advocacy can't be beat! I'm curious about how and when you developed..." + (show)
@rosemarya

@athenalee,
Knowledge and self advocacy can't be beat!
I'm curious about how and when you developed this healthy habit. Have you always been this way, or was your liver/pre-transplant condition the reason for your interest?

Jump to this post

I’ve always firmly believed in the importance of learning how to, and practicing, eating well, exercising, and using natural herbs/supplements to remain as healthy as possible. This worked well until I turned 60 and was shortly thereafter diagnosed with PBC/liver cirrhosis. Then my research became focused on my disease and learning natural ways to supplement ursodial to help keep my liver functioning. So, since my transplant a whole new realm of research is required! Including, of course, drug interactions and side effects management, and how to avoid getting diabetes, hypertension, osteoporosis, and other diseases common post transplant. I do believe it’s vital that I try my best to be healthy and to know the best path to achieve this. Plus, for me anyway, gaining knowledge keeps me from being depressed and keeps my mind active and away from focusing on current health issues, Covid, not finding employment, etc.

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1 reply
sue6175 | @sue6175 | Jan 31, 2021
In reply to @rosemarya "@jackie421blfdgurl , We are at greater risk of an infection or other complication that can quickly..." + (show)
@rosemarya

@jackie421blfdgurl , We are at greater risk of an infection or other complication that can quickly develop. I don't want to frighten you, however, it is in your best interest talk to your physician or whoever is on duty.
Please check in here tomorrow and let me know what you found out.

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Yes, please contact your liver transplant coordinator Monday am.

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jackie421blfdgurl | @jackie421blfdgurl | Jan 31, 2021
In reply to @amandaa "@jackie421blfdgurl Welcome to Connect. Your abdomen is swollen and sore to the touch. Are you experiencing..." + (show)
@amandaa

@jackie421blfdgurl Welcome to Connect. Your abdomen is swollen and sore to the touch. Are you experiencing any other symptoms right now such as a fever, headache or dark urine? I think you should contact your physician right away. Even if the MRI is not until next week, you should see someone about it.

You will see that I moved your inquiry to the Liver Transplant Support Group so that you can get the support of other members who may have experienced the same thing.

Jackie, are you currently taking any medication? Did your medical team give you signs to look out for illness during your home recovery time?

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I posted a list of my meds, any input is appreciated

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jackie421blfdgurl | @jackie421blfdgurl | Jan 31, 2021
In reply to @amandaa "@jackie421blfdgurl Welcome to Connect. Your abdomen is swollen and sore to the touch. Are you experiencing..." + (show)
@amandaa

@jackie421blfdgurl Welcome to Connect. Your abdomen is swollen and sore to the touch. Are you experiencing any other symptoms right now such as a fever, headache or dark urine? I think you should contact your physician right away. Even if the MRI is not until next week, you should see someone about it.

You will see that I moved your inquiry to the Liver Transplant Support Group so that you can get the support of other members who may have experienced the same thing.

Jackie, are you currently taking any medication? Did your medical team give you signs to look out for illness during your home recovery time?

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My meds include fortress..prednisone..amlodipine..
Pantoprazole..tacrolimus.Was taking mycophenolate but dr. Cancelled that one in place of zortress. There were 8 others but my side effects were horrible so
Dr. Cut me back on number of pills I take. Thank you for your help very appreciated especially since I am new at this.

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