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.

kathycaudle | @kathycaudle | Oct 19, 2021
In reply to @marilynwhitlock "I cant remember, for liver transplant patients, which is better to take when need for back..." + (show)
@marilynwhitlock

I cant remember, for liver transplant patients, which is better to take when need for back pain? Ibuprofen or Tylenol ?

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Hi...I received my liver transplant 11/10/19 and was told to take tylenol only...hope this helps🤗

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jerrynord | @jerrynord | Oct 19, 2021
In reply to @marilynwhitlock "I cant remember, for liver transplant patients, which is better to take when need for back..." + (show)
@marilynwhitlock

I cant remember, for liver transplant patients, which is better to take when need for back pain? Ibuprofen or Tylenol ?

Jump to this post

I agree with Rosemary. I was told only Tylenol. How often you can take it per day I don't remember.

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silverwoman | @silverwoman | Oct 25, 2021

I was told only Tylenol and up to 2000 mg./day.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 25, 2021

Tylenol and over the counter medicines for transplant recipients is something that many of my nontransplant friends do not understand. Although they have the best intentions, they have occasionally given me unsolicited advice. Has that ever happened to you? I am extremely thankful for this Mayo Connect online Community where we can openly share, support, learn together while always adhering to the advice of our own transplant team.

@marilynwhitlock, I am so glad that you brought up the question about Tylenol to the attention of this group! I don't know how long ago you had your transplant, but you are absolutely correct to ask questions when there is any doubt or uncertainty.

I had a recent experience that I want to share because it relates to this topic. 2 weeks ago, on a Sunday morning I went to my local ER due to a quickly rising temperature and intense shivering. . Since I was a transplant recipient, I was immediately tended to (I had called in advance, and surprisingly the ER was not busy at 6AM) I was given IV Tylenol to bring down 103 fever, and had all kinds of lab tests that all came back negative according to the doctor. When the discharge nurse removing the IV and getting me ready for discharge, she told me that I could continue to take Tylenol, or - Motrim (for some leg soreness from previous day yardwork). She acted surprised when I said no to the Motrim, I did not consider her to be qualified to tell me that, plus I did not need it.
@kathycaudle, @jerrynord, @silverwoman,@marilynwhitlock @ronromo - Has anything like that ever happened to you when being seen by a nontransplant health provider? How did you respond?

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2 replies
silverwoman | @silverwoman | Oct 25, 2021
In reply to @rosemarya "Tylenol and over the counter medicines for transplant recipients is something that many of my nontransplant..." + (show)
@rosemarya

Tylenol and over the counter medicines for transplant recipients is something that many of my nontransplant friends do not understand. Although they have the best intentions, they have occasionally given me unsolicited advice. Has that ever happened to you? I am extremely thankful for this Mayo Connect online Community where we can openly share, support, learn together while always adhering to the advice of our own transplant team.

@marilynwhitlock, I am so glad that you brought up the question about Tylenol to the attention of this group! I don't know how long ago you had your transplant, but you are absolutely correct to ask questions when there is any doubt or uncertainty.

I had a recent experience that I want to share because it relates to this topic. 2 weeks ago, on a Sunday morning I went to my local ER due to a quickly rising temperature and intense shivering. . Since I was a transplant recipient, I was immediately tended to (I had called in advance, and surprisingly the ER was not busy at 6AM) I was given IV Tylenol to bring down 103 fever, and had all kinds of lab tests that all came back negative according to the doctor. When the discharge nurse removing the IV and getting me ready for discharge, she told me that I could continue to take Tylenol, or - Motrim (for some leg soreness from previous day yardwork). She acted surprised when I said no to the Motrim, I did not consider her to be qualified to tell me that, plus I did not need it.
@kathycaudle, @jerrynord, @silverwoman,@marilynwhitlock @ronromo - Has anything like that ever happened to you when being seen by a nontransplant health provider? How did you respond?

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I can't say that it has happened to me. I've been incredibly lucky so far and have had a very close relationship with my post-transplant nurse practitionerat Mayo, so the one time I had a temperature, she was right on top of it. Her advice, I trust implicitly.

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ronromo | @ronromo | Oct 25, 2021

I was told by the transplant doctors to only use Tylenol, nothing else.

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athenalee | @athenalee | Oct 27, 2021
In reply to @rosemarya "Tylenol and over the counter medicines for transplant recipients is something that many of my nontransplant..." + (show)
@rosemarya

Tylenol and over the counter medicines for transplant recipients is something that many of my nontransplant friends do not understand. Although they have the best intentions, they have occasionally given me unsolicited advice. Has that ever happened to you? I am extremely thankful for this Mayo Connect online Community where we can openly share, support, learn together while always adhering to the advice of our own transplant team.

@marilynwhitlock, I am so glad that you brought up the question about Tylenol to the attention of this group! I don't know how long ago you had your transplant, but you are absolutely correct to ask questions when there is any doubt or uncertainty.

I had a recent experience that I want to share because it relates to this topic. 2 weeks ago, on a Sunday morning I went to my local ER due to a quickly rising temperature and intense shivering. . Since I was a transplant recipient, I was immediately tended to (I had called in advance, and surprisingly the ER was not busy at 6AM) I was given IV Tylenol to bring down 103 fever, and had all kinds of lab tests that all came back negative according to the doctor. When the discharge nurse removing the IV and getting me ready for discharge, she told me that I could continue to take Tylenol, or - Motrim (for some leg soreness from previous day yardwork). She acted surprised when I said no to the Motrim, I did not consider her to be qualified to tell me that, plus I did not need it.
@kathycaudle, @jerrynord, @silverwoman,@marilynwhitlock @ronromo - Has anything like that ever happened to you when being seen by a nontransplant health provider? How did you respond?

Jump to this post

I’m glad you had nothing serious going on Rosemary!

I have Sjogren’s Syndrome, which is causing peripheral neuropathy and pain. I was told by a rheumatology PA I could consider taking hydroxychloroquine. I informed him I had already looked into it as a potential treatment. However, it has a major interaction with Tacrolimus. To which he responded, “so does Mycophenolate, so it would be okay.”

To which I stated, yes, technically, it does. However, that’s the point of taking them together, as that’s how they work to keep our bodies from developing antibodies that may cause us to reject our transplanted organ(s). And, it’s critical that we do not take anything that may interfere with this process.

Needless to say, since I hadn’t received any real help from him anyway, I stopped seeing him.

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desouza | @desouza | Oct 29, 2021
In reply to @parrot53 "Hello, My name is Susan and I have been diagnosed with cirrhosis and HCC. My current..." + (show)
@parrot53

Hello,
My name is Susan and I have been diagnosed with cirrhosis and HCC. My current question is what is the age limit for a liver transplant at Mayo Clinic in Florida? Current requirements to qualify for a transplant, how distance from the facility affects patients order for transplant, and current exception points/requirements for patients with HCC.

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Hi Susan, I also have cirrhosis/HCC. I’m 66 and pre transplant, waiting for “the call”.
The eligibility criteria T2 it means 2 or 3 tumors smaller then 3cms or 1 no bigger then 5cms.
Also the limit for your AFP is up to 1000.
You have to wait 6 months after have been approved by your Center to be able to get the exceptions points. You can find a lot info @ Optn.org
Good luck in your journey!!!

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 29, 2021
In reply to @desouza "Hi Susan, I also have cirrhosis/HCC. I’m 66 and pre transplant, waiting for “the call”. The..." + (show)
@desouza

Hi Susan, I also have cirrhosis/HCC. I’m 66 and pre transplant, waiting for “the call”.
The eligibility criteria T2 it means 2 or 3 tumors smaller then 3cms or 1 no bigger then 5cms.
Also the limit for your AFP is up to 1000.
You have to wait 6 months after have been approved by your Center to be able to get the exceptions points. You can find a lot info @ Optn.org
Good luck in your journey!!!

Jump to this post

@desouza, Is this the information link that you intended to send? https://optn.transplant.hrsa.gov/

You are absolutely correct. The Organ Procurement and Transplantation Network the top resource for transplant information and policies.

Welcome to Mayo Connect and thank you for sharing from your own experience. I am going to grab your closing message to @parrot53 and say to you, "Good luck in your journey!"

Please know that on Connect, others have walked or are currently walking that journey. Waiting can be a long and lonely time. On Connect, you are never alone.
Have you already had to wait 6 months to meet the criteria and points that you have mentioned? Are on the active waiting list?

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