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.

@racing212

I was at Mayo MN over the week and my meld score went up and I also was told that I have kidney cancer

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@racing212, I'm sorry to hear the news about their finding kidney cancer. How does this affect the waiting for a liver transplant?

Let me know if you'd like to connect with others who have kidney cancer.

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@rosemarya

@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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I was at Mayo MN over the week and my meld score went up and I also was told that I have kidney cancer

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@tgm512500

This was very helpful

Thanks

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Hi @tgm512500, welcome. Are you a liver transplant recipient? I would like to learn more about you and your transplant story.

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@jackie421blfdgurl

Yes MRI was complicated yesterday my doctor already has report but now needs the disk. Don’t know anything. But I will get her the disk we have an appointment nx
Thursday. Thanks for asking. I am praying a pill will solve this.

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I picked up the report and disc
From radiologist. I read report
Apparently there is a collection
Of fluid that builds up under skin after surgery it's composed of blood
plasma that seeps out of ruptured bld
Vessels...if this is my denarii
Draining maybe !! I see doctor
Monday...thanks for asking

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@rosemarya

@jackie421blfdgurl, I hope that you get satisfactory results from your MRI. Is it this week?
I found a discussion for you -
stomach swelling after liver transplant four years ago
https://connect.mayoclinic.org/discussion/stomach-swelling-after-liver-transplant-four-years-ago/

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Yes MRI was complicated yesterday my doctor already has report but now needs the disk. Don’t know anything. But I will get her the disk we have an appointment nx
Thursday. Thanks for asking. I am praying a pill will solve this.

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@jackie421blfdgurl

Transplant done October 2020. Transplant went well came home from hospital two mos.later. I lost a
Considerate amount of weight. Still working on building up my strength. My stomach area was very soft
And almost flat, very flat as I lay on my back. But two to threes ago my top belly is swollen and surgery site where the new liver is located is also swollen and tender,if I punch on the spot it hurts. I am going for a
MRI but that is not scheduled for another week, any advice

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@jackie421blfdgurl, I hope that you get satisfactory results from your MRI. Is it this week?
I found a discussion for you -
stomach swelling after liver transplant four years ago
https://connect.mayoclinic.org/discussion/stomach-swelling-after-liver-transplant-four-years-ago/

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@athenalee

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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@athenalee I agree with you. I love my transplant team but I was not really made aware of these potential problems from immunosuppressants. I also did not have these problems prior to transplant, except for diabetes which apparently goes hand in hand with cirrhosis.
I am really trying to eat healthily also, and I am trying to concentrate on eating to improve my cholesterol and my bones.
JK

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@rosemarya

@athenalee, @tgm512500, @sue6175, @jackie421blfdgurl, @contentandwell, and anyone who is interested

I have located a discussion where the topic of immunosuppressant medications can reach All of our transplant members (not limited to, liver patients at this current discussion title suggests).
It begins:
Weight gain? Hair loss? Headaches? Never missed a beat? What has your experience with transplant medications been? Have you developed a methods to deal with a side-effect? Have your meds changed at all over time? What advice do you have for others in our community that may make their experience better?

Transplant anti-rejection medications. What's your advice?
https://connect.mayoclinic.org/discussion/your-anti-rejection-medications/
@athenalee, Would you like to share your article there?

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Thanks, @rosemarya For directing us to a more inclusive conversation about immunosuppressants. I just checked it out and see that I had contributed to that back in 2020. I plan to go back and review it again later. I seem to learn new side-effects of immunosuppressants frequently. Mine are not the type of side-effects that affect me in an obvious way, they are the quiet but serious side-effects like BP, cholesterol, and osteoporosis.
JK

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@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.

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@athenalee, @tgm512500, @sue6175, @jackie421blfdgurl, @contentandwell, and anyone who is interested

I have located a discussion where the topic of immunosuppressant medications can reach All of our transplant members (not limited to, liver patients at this current discussion title suggests).
It begins:
Weight gain? Hair loss? Headaches? Never missed a beat? What has your experience with transplant medications been? Have you developed a methods to deal with a side-effect? Have your meds changed at all over time? What advice do you have for others in our community that may make their experience better?

Transplant anti-rejection medications. What's your advice?
https://connect.mayoclinic.org/discussion/your-anti-rejection-medications/
@athenalee, Would you like to share your article there?

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@rosemarya

@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?

Jump to this post

You and this site is a god send to me. I was not aware of the problem with bone disease.
I have read a lot of info on my transplant and have researched all my 16 pills, especially
Since I had all those side effects. I am down to 6 pills.I had a CT scan on Friday so
Hopefully I will b able to connect with my doctor. We had 2feet of snow here in Jersey Sunday night till Tuesday am,(today)so I am hoping staff made it in. Thanks so much to all members I feel I would still b lost without this communication, even though my liver t/p
Team is good but they r doing a job they were trained for where we went thru the process.

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