3 weeks post liver transplant: when will I feel better?

Posted by msfins @msfins, May 15, 2022

I had a liver transplant 3 weeks ago because of an autoimmune disease. I don't feel like myself right now. My face is all puffy and swollen which I assume is from the high doses of steroids. I've always been a thinner person but now I feel so fat and that is weighing on me mentally. My legs are still swollen. If I keep them down for even a short time, they become heavy and make it hard to walk. Everyone keeps telling me to be patient but right now nothing feels like it'll get better. I guess I just stupidly assumed things would bounce right back and that frustrates me. Im so miserable and even becoming more depressed. I tell people that and they make you feel guilty for feeling depressed. I guess I'm just looking to talk to people who actually been thru a similar experience. I would like to know how things went for you. Did you have bad side effects to the medicines? Did you ever get depressed after? Do things actually ever go back to normal again? As far as swelling and water retention. When they lowered your steroids did you lose weight and puffy ness in ur face?

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

@crystalfaye

My itching was horrible!!! I will be one year post next month. It took months and four hospital visits to get my itchiness under control. I’m on gabopentin, hydroxzine, and several other meds for the itching. I use numerous creams as well. Let me know if you want any additional info.

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@crystalfaye, that is generous of you to share your email address. You'll notice that I removed your personal phone number. Connect is a public forum. We recommend sharing personal contact information using the secure private message function.

I’d like to underline the benefit of sharing in the group discussions. By posting in the discussions in the Transplants support group your messages benefit many and we can all learn from each other.

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Thank you so very much! I had no idea that my phone number would be attached. Can you just delete my response and I’ll answer again?

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@colleenyoung

@crystalfaye, that is generous of you to share your email address. You'll notice that I removed your personal phone number. Connect is a public forum. We recommend sharing personal contact information using the secure private message function.

I’d like to underline the benefit of sharing in the group discussions. By posting in the discussions in the Transplants support group your messages benefit many and we can all learn from each other.

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How do you post something securely?

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@crystalfaye

How do you post something securely?

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You can share experiences with all members of the support group here as you have been doing. If you wish to share personal contact information, such as an email address, it is better use private messaging. See how in the Help Center https://connect.mayoclinic.org/help-center/

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@myfablife

Sec, Mine to, I absolutely ❤️💚💙 life even tho I have had some 👍👎 it is so good to be alive😊😊😊

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@myfablife
How do you stay motivated to exercise & eat? 5 months post liver T and I have no stamina or appetite. I'm on 1000 cellcept & 0.5 Tacro. Could that be why?

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sec1205, What I did was just try walking maybe 10 minutes. I was an avid walker b/f LTP so it was maybe a little easier for me. Your appetite will come back slowly, if u r not hungry drink a protein shake, 1/2 sandwich some fruit, yogurt jello puddings soups. My favorite was orange shubert.😊
R u taking cellcept twice a day, and tacro twice a day. Yes the immunosuppressants do make u feel tired/weak but that is unfortunately a part of LT. good days/bad days and that’s ok. I think the further u r out u start feeling better💚
I am 2.5 yrs. out and I take 1000 cellcept twice a day tacro 1mg 3/3 monday-Wednesday Thurs-Sunday 3/2. I had an acute liver rejection early October 2022. but doing much better.
It just takes time and remember your body has been thru a lot, major surgery a new liver that your body wants to try and reject. So u just be patient and listen to your body it will let u know when to much is to much.
Stay positive hang in there.💚💙😊

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@msfins i felt exactly the same way as you do. I am now 1-1/2 years post LT. I was also shocked at how poorly I felt and got depressed as well. All I can say is that it WiLL get better. I had a turn around at about 3 months. Then another bigger turn around around 6 months. Try to walk a little every day. This will help get things moving. My transplant team was pretty insistent that I walk daily, if even a little. I had to rely on boost for calories and protein. Food tasted horrible. Find something you can tolerate and try to eat in between boost. It is important to try as best you can to get calories and protein up. I ended up back in the hospital at around 4 weeks post LT because of malnutrition. It was awful, they put a feeding tube down my nose. Your body has been through something huge! Just try to take baby steps with walking and eating. Hang tight, it will get better! ♥️

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@ssapp1

@msfins i felt exactly the same way as you do. I am now 1-1/2 years post LT. I was also shocked at how poorly I felt and got depressed as well. All I can say is that it WiLL get better. I had a turn around at about 3 months. Then another bigger turn around around 6 months. Try to walk a little every day. This will help get things moving. My transplant team was pretty insistent that I walk daily, if even a little. I had to rely on boost for calories and protein. Food tasted horrible. Find something you can tolerate and try to eat in between boost. It is important to try as best you can to get calories and protein up. I ended up back in the hospital at around 4 weeks post LT because of malnutrition. It was awful, they put a feeding tube down my nose. Your body has been through something huge! Just try to take baby steps with walking and eating. Hang tight, it will get better! ♥️

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I will be 18months post transplant in July. I am still struggling with stamina..I have none..my weight, low moods, poor kidney function. Just loads of symptoms.
My husband keeps reminding me I haven't just had an ingrowing toenail sorted it's a huge op having a liver transplant but I hoped I would be feeling like a little lamb now.
My kidneys have never kicked back in following my transplant and I have had dialysis and have monthly checks. I may need a kidney transplant now, but whether this is the cause of my slow recovery or the fact I am 66yrs old I don't know. Good luck to you all hope you feel better soon. Jan x

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Hi msfins. I am just over 1 year whole liver transplant and have learned that I have a new normal that can't be compared to how I felt before my bile duct cancer.
Medications alone have side effects: tremors, fatigue, weakness. Be encouraged that as your year of healing proceeds you will be weaned off medication and adjustments lower amounts of other meds.
Focus on strength, stamina and balance. I contacted Mayo re my unstable walking and tremors and they prescribed physical therapy which helped a great deal.
The old normal was quietly becoming mortally sick. Now my new normal adjusts to medication side effects, takes naps if needed, and continues to work on strength and stamina by walking, aquaaerobics and dancing. I am still not strong or stable enough to go mountain hiking but am working towards that.
Mayo is keeping a watchful eye on me because I have had some anomalies that have required biopsies and other tests. (I refer to these moments as "Mayo-pause") Despite some uncertainties about my health and the feeling I am a bit tethered to Mayo, I decided that I am going to travel to see all my friends of 50 years when I lived in NC despite some uncertainties re my health. My new normal feels pretty good and much better than when I had a failing liver; has to be flexible in planning; and enjoys as much as I can each day.
Hope this helps, Barbara

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@janni1

I will be 18months post transplant in July. I am still struggling with stamina..I have none..my weight, low moods, poor kidney function. Just loads of symptoms.
My husband keeps reminding me I haven't just had an ingrowing toenail sorted it's a huge op having a liver transplant but I hoped I would be feeling like a little lamb now.
My kidneys have never kicked back in following my transplant and I have had dialysis and have monthly checks. I may need a kidney transplant now, but whether this is the cause of my slow recovery or the fact I am 66yrs old I don't know. Good luck to you all hope you feel better soon. Jan x

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@janni1
Thank you. I too have bad kidney function. I do drink a ton of water, lean to more natural remedies but nothing helps. I'm 5 months post and miss my younger self (55 now) the one with energy. It sounds like you have a wonderful husband, what a good reminder. It's a hug op. Life changing. I'm more patient with others than with myself. So self care is vital for me. I can expect to recover like others. My donor/sister went back to work 1 month after surgery. I was resentful of her progress then remembered i was growing a liver. You've got this. Hang in there! This is a great support group. I just joined a few days ago. Learning a lot and it helps to talk. 😊

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