1. < Transplants
Profile picture for lmctif

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.

Profile picture for crexwren
crexwren | @crexwren | Jul 22 11:26am

Hi,

I was diagnosed with PSC 21 years ago. Been seen at Mayo in Rochester the whole time. I am now 1 month post transplant. I have only had a problem with acid reflux and nausea for a few days after surgery. The tremors and high blood pressure are a symptom of the meds.

My labs continue to adjust to the new normal. I feel so much better than I did before.

I wish you all the best,

Roger
Pine City MN

REPLY
1 reply
Profile picture for Rosemary, Volunteer Mentor
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 22 7:33pm
In reply to @fowlair "I am just beginning the evaluation process. My appointments are over the next two weeks. Why..." + (show)
Profile picture for fowlair Mary F @fowlair

I am just beginning the evaluation process. My appointments are over the next two weeks. Why do I need a primary caregiver there with me? I’ll be hiring a CNA as my caregiver post-transplant. I certainly can’t hire someone a year in advance to go to appointments with me.

Jump to this post

@fowlair, I'm not sure whether you are having your appointments this week or starting next week. Anyway, I send my hope and a hug that all goes smoothly for you.

When I was evaluated, I was very weak and sick. There was no way I could have even gone alone. I don't remember, but there might ave been some tests/scans that involves some anesthesia-but not sure.
Is there someone who can accompany you, even though they will not be your primary caregiver? A 2nd set if ears is beneficial. Have you spoken to the evaluation team about the need for a primary caregiver to be with you?

REPLY
1 reply
Profile picture for fowlair Mary F
fowlair Mary F | @fowlair | Jul 22 9:46pm
In reply to @rosemarya "@fowlair, I'm not sure whether you are having your appointments this week or starting next week...." + (show)
Profile picture for Rosemary, Volunteer Mentor @rosemarya

@fowlair, I'm not sure whether you are having your appointments this week or starting next week. Anyway, I send my hope and a hug that all goes smoothly for you.

When I was evaluated, I was very weak and sick. There was no way I could have even gone alone. I don't remember, but there might ave been some tests/scans that involves some anesthesia-but not sure.
Is there someone who can accompany you, even though they will not be your primary caregiver? A 2nd set if ears is beneficial. Have you spoken to the evaluation team about the need for a primary caregiver to be with you?

Jump to this post

I started the appointments on Monday July 21. They go through early August. The evaluation coordinator said I only needed a caregiver for the consultations, not the tests.

I feel wonderful, have no pain, have my strength and have great cognition. You wouldn’t know there was anything wrong with me. But I have a rapidly growing 2cm tumor right next to the vein in the center of the liver and non-alcoholic cirrhosis. So far my tests have gone well, at least I think so. I was surprised by them taking 30 vials of blood!

I meet with the social worker on Friday the 25th. Hopefully will learn a lot more then.

REPLY
Profile picture for rachel5239
rachel5239 | @rachel5239 | Jul 23 2:17pm
In reply to @mego2k "I am a recent liver transplant patient ( March 10,2019 . You could experience a lot..." + (show)
Profile picture for mego2k @mego2k

I am a recent liver transplant patient ( March 10,2019 . You could experience a lot of things that you might think are not related to liver disease but are, like severe itching , rashes , weight loss just to name a few. My best advice to tell you is do what the doc tells you. Buy into the process it will be hard somedays, but stay the course, stay active as I worked for 4 hours on the day they wanted me to go to the hospital. Most of all stay positive that you will be blessed with a transplant . Even if you don’t get one at least your loved ones have good memories. I wish everyone could get the gift of life as I did. Good luck with the journey. Also if you can research life after transplant some as that ride is awesome and scary all in one.

Jump to this post

I am 38 years post transplant. It is a journey but one worth taking. Blessings on your transplant journey.

REPLY
Profile picture for Colleen Young, Connect Director
Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 5 7:18pm
In reply to @crexwren "Hi, I was diagnosed with PSC 21 years ago. Been seen at Mayo in Rochester the..." + (show)
Profile picture for crexwren @crexwren

Hi,

I was diagnosed with PSC 21 years ago. Been seen at Mayo in Rochester the whole time. I am now 1 month post transplant. I have only had a problem with acid reflux and nausea for a few days after surgery. The tremors and high blood pressure are a symptom of the meds.

My labs continue to adjust to the new normal. I feel so much better than I did before.

I wish you all the best,

Roger
Pine City MN

Jump to this post

@crexwren, congratulations on the new liver. After living with primary sclerosing cholangitis (PSC) for 21 years, I can imagine that you feel so much better than before. Has the acid reflux and nausea resoved now?

REPLY
Profile picture for crexwren
crexwren | @crexwren | Aug 5 8:15pm

Hi Colleen,

I do feel so much better. The five days of extreme acid while in the hospital was well worth it. I have had bouts of nausea since but it has gotten much better.

My waiting for a liver didn’t seem real until I received to call. I am so grateful to be feeling better and to have received a healthy liver.

Roger

REPLY
Profile picture for rachel5239
rachel5239 | @rachel5239 | Aug 6 10:59am
In reply to @kim1965 "@rachel5239, My wife is 6 months post liver transplant. Our team gave her an option to..." + (show)
Profile picture for kim1965 @kim1965

@rachel5239, My wife is 6 months post liver transplant. Our team gave her an option to have a liver transplant as she had NET, and the only remaining area with NET was her liver. The team felt it was her best chance to give her the best result over time. She had the transplant in January 2025, and has had 4 follow-up surgeries to fix items. Then had fluid around the lungs for about 5 months which was drained repeatedly. Now she is still dealing with a breathing issue from the start actually, that our team just says it takes time to heal and resolve. She can only walk about 30 yards or so, and has to sit down. She spends most of her day in a chair worried about losing her breath. What if any advice/experience do you have regarding the breathing issue, if so how long did it last, and what did you do to improve it? All her blood tests are good, there doesn't appear to be major issues with the function of the new liver.

Jump to this post

I did not have any of those problems. It takes about a year for things to get back to somewhat normal. Also it takes time to get set up with the proper meds for you. Blessings on your transplant journey.

REPLY
Profile picture for stolson1
stolson1 | @stolson1 | Aug 8 10:40am

It’s been six years post liver transplant for me. I was diagnosed with Alpha 1. I had a few issues the first year but everything else has been great. I think of my donor often and her family. I am so thankful I was so sick.

REPLY
View MoreView Less
Please sign in or register to post a reply.