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.

@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.

REPLY
@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.

Jump to this post

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.

REPLY

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.

REPLY
@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
@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

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?

REPLY
@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?

Jump to this post

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.

REPLY
@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?

Jump to this post

Hi Melissa. I'm so sorry to hear you are going through this so soon after transplant. I have not experienced this but have seen many who have. It must be very scary but I've only seen positive outcomes. Wishing you well.

REPLY
@melissa0919

Thank you. It is a lot to cope with. I figured once I got my liver and went through the initial recovery I would be ok. But that’s not the case at all. If there is anyone on here that has went through rejection please connect with me. I am extremely overwhelmed, because like I said I figured I would be better after recovering the initial part.

Jump to this post

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?

REPLY
@katebw

@melissa0919 I think what @rosemarya was asking was if there is anything else you want to share, things others in this group may support you about. There is never any pressure to share more than you want to. I’ve found this to be very helpful to get reality checks when things are hard. For instance I recently had a scare about rejection or bile ducts as my numbers have been rising, and I reached out to this group to see if anyone had a similar experience and how they coped.
I’m sure you’re sick of all of this - sick of hospitals even though it sounds like this is the place for you to be. I’m praying for you and thinking of you, offering strength for this journey. 💗

Jump to this post

Thank you. It is a lot to cope with. I figured once I got my liver and went through the initial recovery I would be ok. But that’s not the case at all. If there is anyone on here that has went through rejection please connect with me. I am extremely overwhelmed, because like I said I figured I would be better after recovering the initial part.

REPLY
Please sign in or register to post a reply.