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.

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@rosemarya

@karenmarian2, It is obvious that you are a caring individual who wants the best for your boyfriend. First, I would like to say that he is doing the absolute best thing possible by being seen by his transplant team, taking his meds, and getting routine labs! The required routine labs are used to monitor the level of his immunosuppressant (anti rejection) medicine in his body., and also to show the transplant team about other health concerns like blood sugar/diabetes, iron, thyroid etc levels. Even though he doesn't currently have a PCP, he is being monitored. And I would like to think that his transplant team is giving him advice and directions for keeping the diabetes under control.
Karen, I have been married to my husband for 46 years. He was my caregiver during my transplant. Early on, he drove me crazy with reminding me to
take my meds or checking if I took them. He did it because he cares, but annoying anyway, like he was hovering over me.
Is it possible that your boyfriend feels like you are mothering him or don't trust him about complying with his health requirements?

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Could be very possible. Unfortunately last night he decided he wanted to take a break from us. I try and do the best I can. He doesn’t want to burden me with his illness. I know that’s it. I just wish he knew how deeply I love him and would do anything to stand by his side during this difficult time in life. Unfortunately his quality of life post transplant hasn’t been the best. Thank you for your caring advice.

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@gingerw

@colleenyoung Thank you for asking me in to this conversation.

@karenmarian2 As others have mentioned, welcome to Mayo Clinic Connect. It's a difficult situation for you, seeing this is a long-distance relationship. I know his transplant team is his sole medical at this time, but he must have had a primary care doctor prior to transplant. Wonder what happened to them? Maybe he can ask them for a referral to a PCP if his old doctor is no longer in the picture.

Going gentle on your approach may get you answers without anger. By telling him you love him, letting him know that to understand his daily care will go a long ways in easing your mind. He probably would be care-compliant, or not, whether you were right there with him, or not. My husband is a kidney transplant recipient, and he is faithful about his medications [even saying he is grateful I remind him, most of the time!] but got into some less-than-stellar eating habits. It took a poor labwork result recently for him to understand he had to modify his ways. But I needed to let him make his own mind up, which was difficult for me.

Letting your boyfriend know and hopefully understand that you care deeply for him, and you want him around for a long, long time, he will understand the reasons you seem to "nag" him. Do you think he would feel less aggravated if he understood this? Any chance in the future you two would be in the same city?
Ginger

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Hi Ginger,
He decided that maybe I was more in love than he was so he says. I still think it’s his health. He feels like it’s unfair for me to be with him bc he can’t do the things he thinks I would like to do. If he only understood that just his love and being with him is all I want. I tell him all the time. Not having a good day to say the least.

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@karenmarian2

Hi Ginger,
He decided that maybe I was more in love than he was so he says. I still think it’s his health. He feels like it’s unfair for me to be with him bc he can’t do the things he thinks I would like to do. If he only understood that just his love and being with him is all I want. I tell him all the time. Not having a good day to say the least.

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@karenmarian2 Oh, dear, I am so sorry to hear this! Letting him gently know how you are feeling may help him in a while. In the mean time, make sure to take care of yourself, please. Perhaps he will come around.
Ginger

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@gingerw

@karenmarian2 Oh, dear, I am so sorry to hear this! Letting him gently know how you are feeling may help him in a while. In the mean time, make sure to take care of yourself, please. Perhaps he will come around.
Ginger

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He feels like he is a burden. I’ve told him repeatedly how much I care and it does not bother me. When you love someone nothing should stand in the way of support. I am also going through some things and I feel abandoned by him.

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@karenmarian2

He feels like he is a burden. I’ve told him repeatedly how much I care and it does not bother me. When you love someone nothing should stand in the way of support. I am also going through some things and I feel abandoned by him.

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@karenmarian2 Exactly what you said, "When you love someone nothing should stand in the way of support." You may have to look deep within you to figure out just how to impress him on this point. I have been there, still doing that, myself, unfortunately. Would telling him you feel abandoned make him run further away or draw you closer, do you think? Do you have a trusted friend, counselor or religious figure you could confide in to give you some support?
Ginger

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@karenmarian2

Could be very possible. Unfortunately last night he decided he wanted to take a break from us. I try and do the best I can. He doesn’t want to burden me with his illness. I know that’s it. I just wish he knew how deeply I love him and would do anything to stand by his side during this difficult time in life. Unfortunately his quality of life post transplant hasn’t been the best. Thank you for your caring advice.

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@karenmarian2, I am so sorry to learn of this upset in your life. I am late to reply, and I agree with everything that @gingerw has already shared.
Right now, your focus needs to be on yourself so that you can someday have better days.
Has he left the door open for future communication? Do you have someone that you trust that you can confide in?

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@gingerw

@karenmarian2 Exactly what you said, "When you love someone nothing should stand in the way of support." You may have to look deep within you to figure out just how to impress him on this point. I have been there, still doing that, myself, unfortunately. Would telling him you feel abandoned make him run further away or draw you closer, do you think? Do you have a trusted friend, counselor or religious figure you could confide in to give you some support?
Ginger

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I am seeing a counselor. I still feel telling him I feel abandoned won’t help. He is convinced he has 5 years at most to live. He says it all the time. With that being said and having to retire early I’m sure he feels as if what’s the use or that he has nothing to offer. His transplant was in 2018-19. I just don’t understand why fate would put me back in touch with him only to break my heart. I believe he had diabetic neuropathy. He complains about his legs all the time and he had to use a walker. I don’t understand why he has no stamina. He sleeps a lot. What exactly did you mean by you have been there anc still doing that? I can’t tell you how much I appreciate you chatting with me.
Karen

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@karenmarian2

I am seeing a counselor. I still feel telling him I feel abandoned won’t help. He is convinced he has 5 years at most to live. He says it all the time. With that being said and having to retire early I’m sure he feels as if what’s the use or that he has nothing to offer. His transplant was in 2018-19. I just don’t understand why fate would put me back in touch with him only to break my heart. I believe he had diabetic neuropathy. He complains about his legs all the time and he had to use a walker. I don’t understand why he has no stamina. He sleeps a lot. What exactly did you mean by you have been there anc still doing that? I can’t tell you how much I appreciate you chatting with me.
Karen

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@karenmarian2 Taking care of yourself however that is defined, is a good thing for you to do. Acknowledging your feelings, and how this whole situation makes you feel and act, is important. Being a distance away from each other, it sure must be hard to have a sit down face-to-face, which might really help, right?

Gosh, I wonder why he thinks he has a limited life span now? Did he misunderstand what someone might have said to him? I know for most all organ recipients, their gratitude is paid forward by making a difference, and living the life they might not have had, otherwise. Is there any way you can tap into some counseling for both of you together, to get to the root of all this? The things he has shared with you like the issues with his legs, lack of stamina, etc. might be traced back to making sure he is taking all his medications as prescribed, and following guidelines set by his transplant team. Perhaps he might agree to go see his them and figure this out?

My husband is a kidney recipient, October 2016. There have been and still are issues/concerns that I have regarding his life-style now and what I would prefer to see. I can only express my thoughts, but not force him to do anything he isn't ready for. That said, I do support him, and am grateful to his donor.
Ginger

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@rosemarya

@karenmarian2, I am so sorry to learn of this upset in your life. I am late to reply, and I agree with everything that @gingerw has already shared.
Right now, your focus needs to be on yourself so that you can someday have better days.
Has he left the door open for future communication? Do you have someone that you trust that you can confide in?

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Honestly I’m not sure. He is not the best communicator to begin with. I did reach out and I’m waiting to hear back. That could be a yes or a no. I’m the mean time I am counseling. I truly appreciate your support.

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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?

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