Post liver transplant fatigue

Posted by des46893 @des46893, Fri, Aug 16 5:35pm

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.

@des46893 I am 35 months post-transplant. I do not generally have a problem with fatigue but do sometimes and I attribute that to how active I usually am, that I have sleep issues, and that I am getting old.
Right now I an dealing with a fractured upper femur but usually I go to my health club 6 days a week, doing water aerobics 3 days, and exercising in the gym the other 3 days. I think exercise does help, and it certainly cannot hurt. Eating healthily helps too. On the days that I cheat I an definitely more tired.
JK

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@des46893, After my transplant, I remember feeling some tiredness, but I would not describe it as fatigue which I had experienced prior to transplant.
I treated myself to daily uninterrupted naps for a long time afterwards. In fact, my husband intercepted all phone calls or interruptions from noon to 3:00 every day until I gradually regained my strength. It took a while for my endurance and stamina to catch up, though.
My transplant doctors had me take iron supplement for anemia for a while after my transplant (I think maybe 3 yrs) and my thyroid level was also checked regularly.
Exercise or some activity is always advisable after transplant, and your team will be the best to decide what level of activity is best for you based on your situation.
Another possibility for your fatigue is a side effect of some of the immunosuppressant medications and/or other medications that you are taking. Have you mentioned this to your team? You do not need to wait until you have an appointment, you should be able to contact your coordinator between appointments.

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@des46893 my husband is almost 14 months post transplant. He has some days where he is more tired than others, but it's not daily. I agree with trying to get more exercise. It's proven that the more you move the more energy you have.

Also, I agree that you should talk to your care team and your family practice doctor, if you haven't. It could be related to something else.

Blessings,
JoDee

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@jodeej

@des46893 my husband is almost 14 months post transplant. He has some days where he is more tired than others, but it's not daily. I agree with trying to get more exercise. It's proven that the more you move the more energy you have.

Also, I agree that you should talk to your care team and your family practice doctor, if you haven't. It could be related to something else.

Blessings,
JoDee

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@des46893 I am 7 months post transplant and am almost always fatigued. I can't attribute it to any one reason. I am going with the flow resting and napping as needed. I'm assuming (because I don't know) that this will pass in time.

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@gaylea1

@des46893 I am 7 months post transplant and am almost always fatigued. I can't attribute it to any one reason. I am going with the flow resting and napping as needed. I'm assuming (because I don't know) that this will pass in time.

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@des46893 I think the fatigue will pass in time, we are all different in how we recover. My only suggestion is to try to be active even when you don’t want to be, it helps. Honestly, every time I go to my health club I go with a grimace on my face but when I am done I really do feel better than I did when I started! My son who is a fitness addict says that even he has to force himself to go to the gym.
JK

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@des46893, Have you started any kind of exercise/activity program in an attempt to counteract the fatigue?

One thing that my transplant team stresses is exercise to promote bone health since our immunosuppressants can mess with bone density. If you have been inactive for a while, be prepared to start out slowly.
I find that on days when I exercise, that I have more energy throughout the day. But if I over do it, I am double exhausted. I had to learn how my body reacts and how to balance what works for me. But either way, I sleep soundly at night!

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@rosemarya

@des46893, Have you started any kind of exercise/activity program in an attempt to counteract the fatigue?

One thing that my transplant team stresses is exercise to promote bone health since our immunosuppressants can mess with bone density. If you have been inactive for a while, be prepared to start out slowly.
I find that on days when I exercise, that I have more energy throughout the day. But if I over do it, I am double exhausted. I had to learn how my body reacts and how to balance what works for me. But either way, I sleep soundly at night!

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I’m wondering if anyone is on meds for bone density. My endocrinologist said that I could be a candidate for one of the drugs for osteoporosis because of the prednisone I’m taking and having osteopenia. It was ok’d by Mayo, but I’ve looked at the possible side effects and decided to wait til I see my endocrinologist next summer.

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@cmael

I’m wondering if anyone is on meds for bone density. My endocrinologist said that I could be a candidate for one of the drugs for osteoporosis because of the prednisone I’m taking and having osteopenia. It was ok’d by Mayo, but I’ve looked at the possible side effects and decided to wait til I see my endocrinologist next summer.

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@cmael I am in the exact same position as you. It never occurred to me that my endocrinologist would have a role in this, what involvement does he have? I see him in September and my PCP in October so should I be speaking to my endo about this?
Thanks.
JK

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@contentandwell

@cmael I am in the exact same position as you. It never occurred to me that my endocrinologist would have a role in this, what involvement does he have? I see him in September and my PCP in October so should I be speaking to my endo about this?
Thanks.
JK

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At my last appointment last summer, he said that if I would be on prednisone (5 mg or more) for more that 3 mos, it’s suggested that I take an rx for bone health. After my 1 yr check, and having a Dexa scan, I messaged him asking if he could check my scan and let me know if he thought I should be taking one of the meds for bones. He replied saying that after reviewing the scan etc. he could/would recommend it. It’s probably a good idea to talk to your endocrinologist about it. They are the ones who treat it. Prior to my transplant, he was the one who ordered my Dexa scans. I also see him for thyroid issues and previously parathyroid issues.

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@cmael

At my last appointment last summer, he said that if I would be on prednisone (5 mg or more) for more that 3 mos, it’s suggested that I take an rx for bone health. After my 1 yr check, and having a Dexa scan, I messaged him asking if he could check my scan and let me know if he thought I should be taking one of the meds for bones. He replied saying that after reviewing the scan etc. he could/would recommend it. It’s probably a good idea to talk to your endocrinologist about it. They are the ones who treat it. Prior to my transplant, he was the one who ordered my Dexa scans. I also see him for thyroid issues and previously parathyroid issues.

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@cmael, @contentandwell – I have been getting bone density scans since I was first diagnosed with liver disease. Knowing that liver disease does affect bones, my doctors wanted to establish a baseline for me. Since my transplant, part of my routine aftercare has been routine bone density scans (I think every 2 years) and they show some improvement from my serious decline at time of my severe stage of liver failure. I am at the osteoporosis stage, and I am encouraged at each annual post transplant check-up to keep on doing weight bearing exercises and to get enough calcium in my diet, which I supplement with Calcium Citrate/Vitamin D (approved by my transplant team). So far, I'm holding steady. I have my bone density scans done at Mayo when I am there as part of my check-up.

I am curiously looking toward what might be down the road (or trail since I like to hike) so I found this information to be helpful. I want to share it here. It covers a wide range information, even role of endocrinologist and diagnisis and treatment. (medication, exercise, diet).
https://www.mayoclinic.org/diseases-conditions/osteoporosis/symptoms-causes/syc-20351968
It also tells about other conditions that can increase the risk of osteoporosis. And questions for your doctor.

I don't see my team for another year. Let me know what you find out.

@cmael, Come back! I just added the link!

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Thanks, @rosemarya That article is very helpful. It’s been a while since I’ve had a bone scan but the recent fracture caused me to ask my PCP if I should. From what I read in the article I would not be surprised to find out if I do need to start taking a medication. I did start taking calcium carbonate and vitamin D, also with my team’s approval. They do leave things not directly related to the transplant to the PCP. It sounds as if my PCP once again dropped the ball. 😕
JK

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@rosemarya

@cmael, @contentandwell – I have been getting bone density scans since I was first diagnosed with liver disease. Knowing that liver disease does affect bones, my doctors wanted to establish a baseline for me. Since my transplant, part of my routine aftercare has been routine bone density scans (I think every 2 years) and they show some improvement from my serious decline at time of my severe stage of liver failure. I am at the osteoporosis stage, and I am encouraged at each annual post transplant check-up to keep on doing weight bearing exercises and to get enough calcium in my diet, which I supplement with Calcium Citrate/Vitamin D (approved by my transplant team). So far, I'm holding steady. I have my bone density scans done at Mayo when I am there as part of my check-up.

I am curiously looking toward what might be down the road (or trail since I like to hike) so I found this information to be helpful. I want to share it here. It covers a wide range information, even role of endocrinologist and diagnisis and treatment. (medication, exercise, diet).
https://www.mayoclinic.org/diseases-conditions/osteoporosis/symptoms-causes/syc-20351968
It also tells about other conditions that can increase the risk of osteoporosis. And questions for your doctor.

I don't see my team for another year. Let me know what you find out.

@cmael, Come back! I just added the link!

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Thanks Rosemary! I’ll check it out.

Liked by cehunt57

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@cmael

I’m wondering if anyone is on meds for bone density. My endocrinologist said that I could be a candidate for one of the drugs for osteoporosis because of the prednisone I’m taking and having osteopenia. It was ok’d by Mayo, but I’ve looked at the possible side effects and decided to wait til I see my endocrinologist next summer.

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@cmael I just happened across your post, if that’s ok. If you are taking any steroids or anti rejection meds, you’ll want to get a baseline bone scan just so you know the health of you bones (especially before winter and snow comes along)! Your primary doctor can order it. Depending on the outcome, you should see an endocrinologist. I had a bone scan last summer and I just thought it was routine. Silly me! The prednisone I was on had done a real number on my pelvis and wrists (where they measure density). So now I’m on weekly Fosamax, which has caused no problems. 😊. Don’t wait til next year!

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@gaylea1

@des46893 I am 7 months post transplant and am almost always fatigued. I can't attribute it to any one reason. I am going with the flow resting and napping as needed. I'm assuming (because I don't know) that this will pass in time.

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@gaylea1, I like your words, "going along with the flow and napping as needed". That has worked well for me, too. Over time, my need for daily naps has declined. For some reason, I seem to recall that at 9 months post transplant, I made a realization that I felt normal. I don't know why that sticks in my mind but it could be that 2009 was history and 2010 was going to be my 1st whole new year with my new organs. I transplanted in April 2009.
Anyway, enough of my chattering, How are you doing with the fatigue? Are you aware of any improvement?

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@rosemarya

@gaylea1, I like your words, "going along with the flow and napping as needed". That has worked well for me, too. Over time, my need for daily naps has declined. For some reason, I seem to recall that at 9 months post transplant, I made a realization that I felt normal. I don't know why that sticks in my mind but it could be that 2009 was history and 2010 was going to be my 1st whole new year with my new organs. I transplanted in April 2009.
Anyway, enough of my chattering, How are you doing with the fatigue? Are you aware of any improvement?

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@rosemary's…thank you so much for following up with me. My fatigue is calming down a bit. I do get tired after/while shopping or walking about after an hour or so. If I have a strenuous day i feel it the next day but take it easy. My "napping" has become infrequent now. I don't feel quite normal yet but I put that down to all the ERCPs and pancreatitis bouts (the last one being the beginning of June). My liver function is good though and I'm grateful for that if nothing else. Last year at this time I was dying and I'd had enough with the wait. Now I'm dying to live! I know normalcy is just around the corner 💖

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