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?

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I am a year and a half post transplant and I can tell you it does get better. I took me about a year to really feel normal again and get back my energy and now I feel 100 percent. I wake up every morning thinking how lucky I am to be alive. My advice is to stay as active as you can, as exercise, even a little, will make you feel much better. Stay positive telling yourself that every day is a step forward. You may have setbacks or bad days, but those too will diminish in time. The sun always shines after the rain.

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Hi Vivian, wow so excited to hear about another long timer.. I am almost 3years. LTP I am so curious of how much immunosuppressant meds you have to take after 25 years.
What a celebration 🎉 🥳

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@myfablife

Hi Vivian, wow so excited to hear about another long timer.. I am almost 3years. LTP I am so curious of how much immunosuppressant meds you have to take after 25 years.
What a celebration 🎉 🥳

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Hello, myfablife! I take 1 mg tacrolimus in the morning and 1/2 mg tacrolimus at night. No other immuno suppression medication. Note that Mayo allows me to have a low level because I have had zero episodes of rejection after the first year of transplant passed(yes, the first year is a roller coaster of adjusting medication dosage)and my liver panel numbers are stellar. The other element is how our bodies process the medication, some need more, some need less and we have no control over that. What matters is the level that comes up on your labs, not the number of pills you take. Best to you!

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Hi
Liver transplantation is a serious business. I managed to escape the wrath of nature 4 and a half years ago and I am still breathing. A guardian Angel guided me to a place called second life. This is a miracle and yours too.
Usually, you will experience a marked improvement almost immediately after surgery.
The first course of action: please contact your coordinating nurse in the hospital and pass on the information you have provided.
Try to move around and do not sit in just one place.
Your liver should be stable right now and please stick to the medications prescribed by the Hospital. Deviations will cause major trouble.
Check your food intake. Fiber, Fiber, protein only. Stay away from Sodas or any sugared substance and please read the labels when you shop. This type of instruction you may have had during your stay in the hospital after the surgery. A diet specialist usually spells out the details.
Keep your spirits high, just think of the 2nd life you have been given. Be happy and positive all will fall into place.
All the best

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@cromme50

Hello, myfablife! I take 1 mg tacrolimus in the morning and 1/2 mg tacrolimus at night. No other immuno suppression medication. Note that Mayo allows me to have a low level because I have had zero episodes of rejection after the first year of transplant passed(yes, the first year is a roller coaster of adjusting medication dosage)and my liver panel numbers are stellar. The other element is how our bodies process the medication, some need more, some need less and we have no control over that. What matters is the level that comes up on your labs, not the number of pills you take. Best to you!

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Hi Vivian, thank you for getting back with me.. I have had -rejection so I am taking a lot more prograf than I would like. I am looking forward to the day I have to NOT take so much celcept or not have to take any like u.
Happy summer and many more days ahead to you.💚💚

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@cromme50

Sabes porque cirrosis ja volvio?

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Doctors they do not know the reason but my Hepatology asumes the 9 times doctors went inside my liver to clean the viles duct MAY BE affected the liver. So for now they control my Hypertension with Nadodol in a couple of weeks I will have the 3th Endoscopy to see if no varices are in my esophagus this is the way I have to live but I am happy to live after the transplant 3 years

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@rosemarya

@arqui02000, I can see that you are following the good advice of your doctor, and that you have a positive outlook and a strong spiritual connection. I trust that your determination and gratitude will carry you forward as you adjust to the recent diagnosis of cirrhosis. I wish that you were not in this current situation.

Are you having any symptoms of the cirrhosis? Are you currently on the transplant list?

I will pray for your 2nd chance.

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Rosemay thank you for your comment and yes I am so positive and graceful what I have 3 years of new life. yes I have cirrhosis symptoms but no bad as the first one and I am not in the list yet because liver condition is not bad yet but cirrhosis continue to affect the liver life Doctor wait until the liver condition shows for a new transplant for now as the first time they keep me in control with medicines

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@arqui02000

Rosemay thank you for your comment and yes I am so positive and graceful what I have 3 years of new life. yes I have cirrhosis symptoms but no bad as the first one and I am not in the list yet because liver condition is not bad yet but cirrhosis continue to affect the liver life Doctor wait until the liver condition shows for a new transplant for now as the first time they keep me in control with medicines

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Hi

Would you happen to know your MELD score?
That might help you to find out what stage of the process you are at.

Take care

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I follow your advice about second transplant but it is fine for me if I do not get a respond, the MELD SCORE I did not ask yet. Because of my first liver Transplant I studied a lot before my transplant so I am specialist in Liver Transplant jajajaja... I am not a doctor Mary but my brother died 6 years ago he got a liver transplant but it wont work on him so I have experience in asking doctors about my liver, my brother lived in california also and he was a Doctor ( pediatrician ). He was transplanted in UCLA the first hospital my doctors send me but at beginning because I need to be in the list I accepted but when I had an opportunity to be transfer to Mayo I chose this Hospital

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Good morning
On my recent blood draw report my liver enzymes have increased. Not a huge amount , but an increase nun the lest. Has anyone else experienced this?

Thank you 😊

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