1. < Transplants

What helps with post liver transplant fatigue?

Posted by des46893 @des46893, Aug 16, 2019

I am 40 months post liver transplant. Prior to my transplant my only symptoms were muscle cramping and fatigue. Post surgery I no longer have issues with cramping but I am still dealing with fatigue. I googled for information and was surprised that this a common occurrence after the transplant. Some of the literature speculated that an exercise program might help. Any opinions or experiences to share would be appreciated.

Interested in more discussions like this? Go to the Transplants Support Group.

eparker6 | @eparker6 | Oct 1, 2022
In reply to @myfablife "Hi sparked, I would say a little over a year I was feeling must stronger and..." + (show)
@myfablife

Hi sparked,
I would say a little over a year I was feeling must stronger and could do my work out and not feel totally exhausted like I did early on. I am almost 2yrs. out and feel really good, I am very fortunate that I was in very good health b/f LTP with no underlying medical conditions except my liver. The only meds I take is immunosuppressants “yuk” but we have to to stay alive. If I do take anything I try to research the natural b/f the medical meds. I hate putting things into my body. This of course my choice😊 so u r still early in your TP not sure what u have to take but when they start decreasing your immuno meds it helps.
Stay strong and positive, u got this!!😊🦋

Jump to this post

Hello,
I, too, just had liver issues and was healthy otherwise. I take minimal tacro , cellcept, fluconazole. I hope to stop cellcept soon. I am thankful for each day and will try to be more patient.
You have really encouraged me, thank you

REPLY
1 reply
myfablife | @myfablife | Oct 1, 2022
In reply to @eparker6 "Hello, I, too, just had liver issues and was healthy otherwise. I take minimal tacro ,..." + (show)
@eparker6

Hello,
I, too, just had liver issues and was healthy otherwise. I take minimal tacro , cellcept, fluconazole. I hope to stop cellcept soon. I am thankful for each day and will try to be more patient.
You have really encouraged me, thank you

Jump to this post

You r so welcome, keep me posted on your progress.
Life is fabulous for sure🦋🌈😊

REPLY
1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 1, 2022
In reply to @myfablife "You r so welcome, keep me posted on your progress. Life is fabulous for sure🦋🌈😊" + (show)
@myfablife

You r so welcome, keep me posted on your progress.
Life is fabulous for sure🦋🌈😊

Jump to this post

@eparker6 - I'm a little late to join in this conversation. I was at Crater Lake enjoying the views and doing some hiking. I am 13 years post transplant (simultaneous liver and kidney). I am/ was in good health, too, with no underlying conditions except for the liver disease that took my kidneys, too. I used to walk for exercise. My husband and I enjoy hiking. Looking back, I remember that we took a trip to the Great Smokey Mountains National Park for hiking 9 months after my transplant. I found that I could hike but it was slower and not as far. I had very little endurance at that time. Over time my endurance has built up, but I now contend with some asthma and 'age'.
@myfablife indicated: Give yourself time and patience. I know you will be pleased.
As for medications, We transplant recipients do start at a higher dose, and it is adjusted as your body responds. Antirejection medications are a life long commitment.

@eparker6, Are you running for distance, time, or both?

REPLY
1 reply
myfablife | @myfablife | Oct 1, 2022
In reply to @ssapp1 "Hi! I am 9 months post liver transplant and I am still experiencing a tremendous amount..." + (show)
@ssapp1

Hi!
I am 9 months post liver transplant and I am still experiencing a tremendous amount of fatigue. I am exercising, I get about 7-8 hours sleep now and I work full time. I am eating pretty healthy. Is anyone else experiencing this?

Jump to this post

Wow u will definitely encourage us. So happy for u. I have CKD now from my LTP but it is stable right now. It is from the meds , is what they tell me.
How much immunosuppressant do u have to take now, how often do u have to have labs.

REPLY
1 reply
eparker6 | @eparker6 | Oct 1, 2022
In reply to @rosemarya "@eparker6 - I'm a little late to join in this conversation. I was at Crater Lake..." + (show)
@rosemarya

@eparker6 - I'm a little late to join in this conversation. I was at Crater Lake enjoying the views and doing some hiking. I am 13 years post transplant (simultaneous liver and kidney). I am/ was in good health, too, with no underlying conditions except for the liver disease that took my kidneys, too. I used to walk for exercise. My husband and I enjoy hiking. Looking back, I remember that we took a trip to the Great Smokey Mountains National Park for hiking 9 months after my transplant. I found that I could hike but it was slower and not as far. I had very little endurance at that time. Over time my endurance has built up, but I now contend with some asthma and 'age'.
@myfablife indicated: Give yourself time and patience. I know you will be pleased.
As for medications, We transplant recipients do start at a higher dose, and it is adjusted as your body responds. Antirejection medications are a life long commitment.

@eparker6, Are you running for distance, time, or both?

Jump to this post

Hi there! At 6 months post, I can run, but it’s not easy. I have less stamina/endurance. When I run daily, I run for distance (which is shorter now). But, I like to run 5k’s too, so I run a little faster. At least I have a goal to get back to my 5k pace, although I’ve never been a very fast runner.
13 years for you! How wonderful. And you’re still hiking! Sorry about your asthma.
Thanks for your input.

REPLY
arqui02000 | @arqui02000 | Oct 2, 2022

Ask the doctor to check if you have Chronic Anemia or if you have bleeding. Be careful because this happen to me and finally after 2 years of my transplant I had Portal Hypertension and my liver started with Cirrosis again. They do an Endoscopy and colonoscopy

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 2, 2022

@arqui02000, I want to welcome you to Connect. I commend you for knowing when to contact your doctor when you have questions or unusual symptoms. I am happy that you doctors are acting on this, but sorry that you will need a new transplant so soon. I had esophageal bleeding before my liver and kidney transplant, and transplanted soon after that only episode. As for the anemia, I had iron infusion before transplant with my dialysis treatment, and I was prescribed iron tablet after transplant as indicated in my labs. That is y only experience.
As I understand your post, you are going to need a 2nd liver transplant. Is that correct? Do you know what caused the portal hypertension and the return of cirrhosis?
How are you feeling?

REPLY
1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 2, 2022
In reply to @myfablife "Wow u will definitely encourage us. So happy for u. I have CKD now from my..." + (show)
@myfablife

Wow u will definitely encourage us. So happy for u. I have CKD now from my LTP but it is stable right now. It is from the meds , is what they tell me.
How much immunosuppressant do u have to take now, how often do u have to have labs.

Jump to this post

@myfablife, I don't remember what amount of Tacrolimus I started with, but it started high and was gradually reduced to where I am now at 1.5 morning and evening (12 hours apart). This has been stable for at least 5 years. I take 2 immunosuppressant meds, I also am taking Cellcept. My routine labs are now drawn every 3 months. Please keep in mind that our medications are individualized.
It sounds good to hear that your CKD is stable right now. That must be a relief!
Some members have shared that they were switched to another medication. I don't know anything about our medications, but I did find this link that might provide you with some information.
Blogs>Transplant>Immunosuppression: Watching For and Managing Side Effects
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/immunosuppression-watching-for-and-managing-side-effects/

REPLY
2 replies
myfablife | @myfablife | Oct 2, 2022
In reply to @ssapp1 "Hi! I am 9 months post liver transplant and I am still experiencing a tremendous amount..." + (show)
@ssapp1

Hi!
I am 9 months post liver transplant and I am still experiencing a tremendous amount of fatigue. I am exercising, I get about 7-8 hours sleep now and I work full time. I am eating pretty healthy. Is anyone else experiencing this?

Jump to this post

Hi, thanks for sharing and for the info 😊💚

REPLY
arqui02000 | @arqui02000 | Oct 3, 2022
In reply to @rosemarya "@arqui02000, I want to welcome you to Connect. I commend you for knowing when to contact..." + (show)
@rosemarya

@arqui02000, I want to welcome you to Connect. I commend you for knowing when to contact your doctor when you have questions or unusual symptoms. I am happy that you doctors are acting on this, but sorry that you will need a new transplant so soon. I had esophageal bleeding before my liver and kidney transplant, and transplanted soon after that only episode. As for the anemia, I had iron infusion before transplant with my dialysis treatment, and I was prescribed iron tablet after transplant as indicated in my labs. That is y only experience.
As I understand your post, you are going to need a 2nd liver transplant. Is that correct? Do you know what caused the portal hypertension and the return of cirrhosis?
How are you feeling?

Jump to this post

I did not have bleeding Doctors prevent with ligament done at the Endoscopy two times into 4 previously months and with 20 mg of Nadodol trying to control the Portal Hypertension. The Doctor is going by phases in my understanding, First is the medicine, second choice is the TIPS (BYPASS) and finally a second transplant. Hope the medicina works but taking for a long time could cause some side effects who knows? but for now still praying and have faith in Godd

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