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.

ajdo129 | @ajdo129 | Dec 2, 2023
In reply to @rosemarya "I hope that today brings some uplifting news to you about your current status. I am..." + (show)
@rosemarya

I hope that today brings some uplifting news to you about your current status. I am aware of how overwhelming this is for you. And I know how frightening it is when our precious organ is at risk. I imagine, too, that the medical terms and activities are confusing as well. I know it was for me. If you are feeling up-to-it, try to engage in conversation with your nurses, as doctors can be quick in /quick out due to their schedule. Are you at your transplant hospital?

@rickherman @silverwoman @gaylea1 @hdillon7 @ajdo129 @gerryp
I want to invite you to visit this conversation and meet @melissa0919 who is in hospital with signs of rejection of her recently transplanted liver. I know that she would appreciate your expressions of hope and encouragement during this difficult time, also Do you have an related experience to share? Have you dealt with rejection?

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To melissa0919
Before I even had a transplant and my friends were calling me to reassure me, I was surprised at how many liver transplants they knew. Friend Sharon has a brother whose third time transplant several years ago is doing well and a local vet is still taking care of the city's pups, cats and other critters after his second transplant. You are not alone.
Though I have yet to face confirmed rejection, at 18 months post transplant I have had several possible rejection scares. After six months post transplant, I would get urgent calls from Mayo after my weekly blood draw results. Over the course of a nine month stretch, Mayo would tell me to come immediately for a biopsy (3), am ultrasound (2) or an ERCP (2). Of course I researched what happens if your body rejects the liver and I learned rejection isn't like an "on/off" light switch. There are several interventions that can turn around the signs of rejection and, if needed, there are many successful repeat transplants.
I have been given a blessing since my original prognosis two years ago when I was told I have two months to live. I treat each day as a lifetime and embrace each moment, challenging or not, as the richness and depth of living. As I have realized that the depth of grief we suffer is the reflection of the love we have. So is the fear of death as the reflection of the preciousness of living. So I focus on the moments of living and fight for them if need be.
I do hope this helps. ajdo129

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Dec 2, 2023
In reply to @alh4 "I had labs this week. Tac is 2.6. ALT 33. AST 29 Tac… I take 2..." + (show)
@alh4

I had labs this week. Tac is 2.6. ALT 33. AST 29
Tac… I take 2 twice a day
My dr is not worried. She is trying to keep dosage as low as we can. I’ll have labs again in a month
Thank you!

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@alh4, That is good to hear! I know that you must feel better, just by knowing that your doctor is not worried about the numbers! There have been times when I have paced the floor while worrying and wondering about a lab or symptom, and then my husband wili remind me to contact my transplant coordinator (nonurgent/nonemergency) thru the patient portal at Mayo.
Does your doctor expect that the dizziness is due to the tacrolimus?

Here is my invitation to you and your daughter. I don't recall having a holiday comment by a recipient and donor.
Holidays: Celebration or Challenge for Transplant Families
https://connect.mayoclinic.org/discussion/holidays-celebration-or-challenge/

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gap | @gerryp | Dec 2, 2023
In reply to @melissa0919 "Thank you for the encouragement. It very much appreciated. I’m very overwhelmed by this. I just..." + (show)
@melissa0919

Thank you for the encouragement. It very much appreciated. I’m very overwhelmed by this. I just though I would get a new liver and everything would be ok and I would get my old self back.

Jump to this post

I totally understand. The entire process is overwhelming. I waited nearly 2 years for a transplant after suffering septic shock, organ failure & permanent liver damage. I had 7 calls for possible transplant - and the first 6 were no-gos. I felt like my resolve was being tested every day. I had serious complications post transplant that required 2 more surgeries. So it’s not always an easy or straightforward process. But the human body & spirit are resilient. Please have faith in your medical team and try to stay as hopeful as possible. Know that you are not alone.

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melissa0919 | @melissa0919 | Dec 1, 2023
In reply to @gerryp "So sorry to learn you are going thru this Melissa. I had my liver transplant about..." + (show)
@gerryp

So sorry to learn you are going thru this Melissa. I had my liver transplant about 20 months ago (deceased donor) - but have not experienced any rejection as of now. I also have several transplant friends who have gone through bouts of rejection - and their transplant teams have been successful in stabilizing them. I too will pray for the same result for you. As silverwoman says above - we will be fighting rejection for the rest of our lives - and storms will certainly come along. I believe that God does not give us more than we can handle.

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Thank you for your encouragement. I trying to be positive. I just had the idea I would get a new liver and get my old self back and that is far from what I have and am experiencing.

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melissa0919 | @melissa0919 | Dec 1, 2023
In reply to @gerryp "So sorry to learn you are going thru this Melissa. I had my liver transplant about..." + (show)
@gerryp

So sorry to learn you are going thru this Melissa. I had my liver transplant about 20 months ago (deceased donor) - but have not experienced any rejection as of now. I also have several transplant friends who have gone through bouts of rejection - and their transplant teams have been successful in stabilizing them. I too will pray for the same result for you. As silverwoman says above - we will be fighting rejection for the rest of our lives - and storms will certainly come along. I believe that God does not give us more than we can handle.

Jump to this post

Thank you for the encouraging words and you’re right he will not put on us more than we are able to bare.

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melissa0919 | @melissa0919 | Dec 1, 2023
In reply to @gerryp "So sorry to learn you are going thru this Melissa. I had my liver transplant about..." + (show)
@gerryp

So sorry to learn you are going thru this Melissa. I had my liver transplant about 20 months ago (deceased donor) - but have not experienced any rejection as of now. I also have several transplant friends who have gone through bouts of rejection - and their transplant teams have been successful in stabilizing them. I too will pray for the same result for you. As silverwoman says above - we will be fighting rejection for the rest of our lives - and storms will certainly come along. I believe that God does not give us more than we can handle.

Jump to this post

Thank you so much for the encouragement and thank you for getting me involved in communication with others. I’m trying to learn how to navigate through the group.

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melissa0919 | @melissa0919 | Dec 1, 2023
In reply to @silverwoman "Melissa0919: Hi there! I received my liver tx at Mayo in Jacksonville 5 years ago and..." + (show)
@silverwoman

Melissa0919: Hi there! I received my liver tx at Mayo in Jacksonville 5 years ago and I appreciate what you are going through. For the first time at the beginning of this year, I experienced a bout of rejection and needed to go to Mayo (500 miles away) for anti-rejection treatment with SoluMedrol. That brought my LFT's down to acceptable range and I was able to go home on prednisone. I've been able to taper to 5 mg. of prednisone a day and, while I dislike the side effects, I'm glad to be able to take it and hang on to my tx liver. It has been my understanding from the very beginning that I will be fighting rejection to one degree or another for the rest of my life and this will not be smooth sailing, but I'm on the green side of the grass and able to do almost everything I enjoy doing most days. The way I figure it, I would have been dead from liver cancer 5 years ago this month and everyday is a gift to be delighted in and treasured. Keep your sunny side up.

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Thank you for the encouragement. It very much appreciated. I’m very overwhelmed by this. I just though I would get a new liver and everything would be ok and I would get my old self back.

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1 reply
gap | @gerryp | Dec 1, 2023

So sorry to learn you are going thru this Melissa. I had my liver transplant about 20 months ago (deceased donor) - but have not experienced any rejection as of now. I also have several transplant friends who have gone through bouts of rejection - and their transplant teams have been successful in stabilizing them. I too will pray for the same result for you. As silverwoman says above - we will be fighting rejection for the rest of our lives - and storms will certainly come along. I believe that God does not give us more than we can handle.

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3 replies
alh4 | @alh4 | Dec 1, 2023
In reply to @rosemarya "@alh4, One of the side effects of Tacrolimus is that it can cause dizziness. I see..." + (show)
@rosemarya

@alh4, One of the side effects of Tacrolimus is that it can cause dizziness. I see that you had surgery 6 weeks ago, and this could be a complicating issue with the introduction of other medications and healing.
I have had tremors after my morning dose , but not dizziness or lightheadedness . I do remember some dizziness and lightheadedness that was related to blood pressure, though.

When did last have labs and tacrolimus level checked? I would encourage you to ask this question to your transplant team. Have you mentioned this to them?

Here is a discussion about dizziness:
- Dizzy still after my liver transplant
https://connect.mayoclinic.org/discussion/dizzy-1/

Jump to this post

I had labs this week. Tac is 2.6. ALT 33. AST 29
Tac… I take 2 twice a day
My dr is not worried. She is trying to keep dosage as low as we can. I’ll have labs again in a month
Thank you!

REPLY
1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Dec 1, 2023
In reply to @alh4 "I had a liver transplant 3 years ago. My oldest daughter blessed me with a part..." + (show)
@alh4

I had a liver transplant 3 years ago. My oldest daughter blessed me with a part of her liver. Basically, have done well. Had colon resection six weeks ago due to diverticulitis. Done well. As of now tac level is 2.6 and alt and ast slightly elevated. 29/33
Those had been in the low 20’s.
I take 2 Tacrolimus AM and PM
It seems that a couple of hours after I take Tac, I seem to be weak and lightheaded. Does anyone else experience this side effect?

Jump to this post

@alh4, One of the side effects of Tacrolimus is that it can cause dizziness. I see that you had surgery 6 weeks ago, and this could be a complicating issue with the introduction of other medications and healing.
I have had tremors after my morning dose , but not dizziness or lightheadedness . I do remember some dizziness and lightheadedness that was related to blood pressure, though.

When did last have labs and tacrolimus level checked? I would encourage you to ask this question to your transplant team. Have you mentioned this to them?

Here is a discussion about dizziness:
- Dizzy still after my liver transplant
https://connect.mayoclinic.org/discussion/dizzy-1/

REPLY
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