Fatigue- post transplant- liver

Posted by ssapp1 @ssapp1, Sep 13 12:08pm

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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Hi,
Wow you maybe over doing it u have done really well to be back at work full time already. Your body has been thru a lot, the medications a lone do a number on you. It took me about a year to start feeling better.
Have u called your coordinator to let her know this.

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It is not uncommon for transplant patients to have easy tiredness and fatigue. Agree with the comment on having your transplant team review immunosuppressants and other medications as some are known to have this side effect. Also have your health care team check vitamin and micronutrient levels, as deficiencies can be present and levels including but not limited to TSH. Rule out sleep disorders including sleep apnea. If you had developed post transplant hyperglycemia and are on oral medication or insulin, blood glucose changes during the day may also be involved. Earlier comment on time from transplant surgery is quite correct. It takes time to get energy back. Some patients return to baseline but some have some residual loss of endurance and fatigue. Diet, weight loss and any loss of muscle mass needs assessment as well. Best of luck to you. Stay strong.

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Thank you for your response. I haven’t checked in with my Transplant Coordinator, but I will. My transplant team is aware of my activities and has given the go ahead on everything. I was just wondering if others experienced fatigue post Transplant post 6 months and longer. I have heard it can be a life long thing, but that didn’t come from my doctor.

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@mdplastics

It is not uncommon for transplant patients to have easy tiredness and fatigue. Agree with the comment on having your transplant team review immunosuppressants and other medications as some are known to have this side effect. Also have your health care team check vitamin and micronutrient levels, as deficiencies can be present and levels including but not limited to TSH. Rule out sleep disorders including sleep apnea. If you had developed post transplant hyperglycemia and are on oral medication or insulin, blood glucose changes during the day may also be involved. Earlier comment on time from transplant surgery is quite correct. It takes time to get energy back. Some patients return to baseline but some have some residual loss of endurance and fatigue. Diet, weight loss and any loss of muscle mass needs assessment as well. Best of luck to you. Stay strong.

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Thank you!!

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@ssapp1

Thank you for your response. I haven’t checked in with my Transplant Coordinator, but I will. My transplant team is aware of my activities and has given the go ahead on everything. I was just wondering if others experienced fatigue post Transplant post 6 months and longer. I have heard it can be a life long thing, but that didn’t come from my doctor.

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@ssapp1, I transplanted 13 yr ago and I remember that I needed a daily nap/ quiet time every day in the early post transplant recovery. I had been critically ill before hand and had much catching-up to do with muscle mass, weight gain, endurance, etc. Even today, my body lets me know that a nap is in order if I have too many overly busy days. I guess that I am fortunate to be retired and can easily work that into my day. I also remember that at 9 months post transplant, that I went to the Great Smokey Mountains for some day hiking with husband, but my endurance was nowhere where it used to be.
I had extreme fatigue ahead of transplant, and the tiredness after surgery was not the same thing. My endurance has improved over time and I am proud to say that I feel good, and have energy and am more active than most of my friends who are my age (73).
I commend you in speaking with your transplant team about your activities and getting the green light from them! I can still hear my transplant nurse and doctors telling me to listen to my body, and to go ahead and be active and get back to my living – that is why I had the transplant.
-I just remembered that I did have to take iron supplement for a period of time after seeing my team for my 4 month checkup. I am interested to hear what your nurse coordinator has to say about your fatigue/tiredness. I look forward to hearing from you.

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@rosemarya

@ssapp1, I transplanted 13 yr ago and I remember that I needed a daily nap/ quiet time every day in the early post transplant recovery. I had been critically ill before hand and had much catching-up to do with muscle mass, weight gain, endurance, etc. Even today, my body lets me know that a nap is in order if I have too many overly busy days. I guess that I am fortunate to be retired and can easily work that into my day. I also remember that at 9 months post transplant, that I went to the Great Smokey Mountains for some day hiking with husband, but my endurance was nowhere where it used to be.
I had extreme fatigue ahead of transplant, and the tiredness after surgery was not the same thing. My endurance has improved over time and I am proud to say that I feel good, and have energy and am more active than most of my friends who are my age (73).
I commend you in speaking with your transplant team about your activities and getting the green light from them! I can still hear my transplant nurse and doctors telling me to listen to my body, and to go ahead and be active and get back to my living – that is why I had the transplant.
-I just remembered that I did have to take iron supplement for a period of time after seeing my team for my 4 month checkup. I am interested to hear what your nurse coordinator has to say about your fatigue/tiredness. I look forward to hearing from you.

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Thank you Rosemary,
It is very helpful to hear about your transplant. I know I push myself too hard. I also just started letting my family members know I am still not 100% and need to rest in the weekend. I think they look at me now and think I am all back to normal before my cancer diagnosis.
Thank you!!
Susan

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I continue to have a feeling that people I interact with including my healthcare team do not understand how tired and fatigued I feel often and how my endurance has dropped following pre transplant cancer related surgery, Chemotherapy and Radiation treatments and post transplant medications. Most people except family see me for short durations when I have rested and often taken a well timed nap before planned activity when I appear to be functional as any normal person, hence difficult for most to understand the limitations. Hard for those who haven’t been through similar circumstances to relate to us.

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@mdplastics

I continue to have a feeling that people I interact with including my healthcare team do not understand how tired and fatigued I feel often and how my endurance has dropped following pre transplant cancer related surgery, Chemotherapy and Radiation treatments and post transplant medications. Most people except family see me for short durations when I have rested and often taken a well timed nap before planned activity when I appear to be functional as any normal person, hence difficult for most to understand the limitations. Hard for those who haven’t been through similar circumstances to relate to us.

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I know what mean! After transplant we look healthy again and we feel better that we can remember. However, we still need medications, rest, healthy diet, safe hygiene (hand washing, avoiding buffets and crowds, no alcoholic beverages etc) .
One of my favorite responses that I get when people learn that I am a transplant recipient is, "…but you look so healthy!" I have yet to ask them, "How would you expect me to look?"
I like how you have discovered the benefits of a nap in preparation for a planned activity. In addition to that, I have a wonderful husband who understands that an early exit is acceptable.
I have some friends who were with me as my liver failed and when I was jaundiced and swollen with ascites and edema, and when I could barely get up to walk. They are surprised that I "still" have to take medications and precautions. It is a good time for me to explain why I need the medications and is well received. These same friends are now the ones who are extremely careful about where we go for any luncheon get-together.

As I have moved further out from my transplant, I need fewer naps. Maybe it is because I have learned to balance my activities and rest, maybe it is what happens after passage of time, or maybe a combination of both.

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In cancer patients with surgery, chemotherapy and/or radiation and post transplant patients on immunosuppressant medications, there may be an imbalance in mechanisms involving Glutamate accumulation which is a metabolite that causes a feeling of tiredness after mental work after about 6 hours even in healthy normal individuals and requires frequent breaks or restful sleep for recovery. This imbalance may be implicated in the fatigue, loss of endurance and other cognitive dysfunction including short term memory loss and difficulty concentration etc. also known as “chemo-brain”. There is ongoing research on this. It is for this reason, well timed naps may be very useful for maintaining some semblance of normalcy.

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