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.

Profile picture for skatesox22 @skatesox22

Hello. I want to start off by telling you that you are going to be just fine and what you're feeling is very normal even though it's really scary. I'm sorry you feel so depressed. It's a lot of hurdles recovering from such a major surgery, I know, I also had my transplant 3 weeks ago Monday.
The best advice I can give you is that you must try to understand that you are now at the doctor's mercy. They are there to help you, and you really don't have a choice but to do every single thing that they tell you to do. That includes your diet, exercising, being smart about your body movements. Every. Single. Little. Thing. You are gonna be physically and mentally pushed to the limit, but you need to push past the noise and fear in your head. Give yourself to a higher understanding that "I HAVE to do this. There is no other option." Use those negative feelings and let them work in your favor. Tell your doubts that you aren't gonna be bullied, you're not gonna be beaten. You will prevail because YOU are the strongest part of YOU. Once you can shift your mindset to knowing that nothing can stop you but yourself, things will get easier and your mood will begin to shift to positivity. It will become addictive. Every morning you may wake up stiff until you're more healed up, but you'll be actually excited to push yourself to get out of bed because it will literally make your body and your mind feel better every day. Trust me please. You can do this. There is nothing stopping you. I hope this helps you in your recovery. The very best of luck. God bless!

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@skatesox22 Welcome to Mayo Clinic Connect! Beautifully stated, and sure to be an inspirations for anyone going through transplant,, Or, really, any difficult diagnosis. It made a difference for me, today, to read your words.

May you continue to heal and feel better!
Ginger

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Profile picture for gigi32 @gigi32

@skatesox22 this is said beautifully .. I will for sure show my husband this! Thank you.

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@gigi32 I'm glad that you and your husband just might find some inspiration in my words. That's all I want for anyone going through this is to share some words of strength and encouragement. May your husband have a speedy recovery and the best for you both.

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Profile picture for skatesox22 @skatesox22

Hello. I want to start off by telling you that you are going to be just fine and what you're feeling is very normal even though it's really scary. I'm sorry you feel so depressed. It's a lot of hurdles recovering from such a major surgery, I know, I also had my transplant 3 weeks ago Monday.
The best advice I can give you is that you must try to understand that you are now at the doctor's mercy. They are there to help you, and you really don't have a choice but to do every single thing that they tell you to do. That includes your diet, exercising, being smart about your body movements. Every. Single. Little. Thing. You are gonna be physically and mentally pushed to the limit, but you need to push past the noise and fear in your head. Give yourself to a higher understanding that "I HAVE to do this. There is no other option." Use those negative feelings and let them work in your favor. Tell your doubts that you aren't gonna be bullied, you're not gonna be beaten. You will prevail because YOU are the strongest part of YOU. Once you can shift your mindset to knowing that nothing can stop you but yourself, things will get easier and your mood will begin to shift to positivity. It will become addictive. Every morning you may wake up stiff until you're more healed up, but you'll be actually excited to push yourself to get out of bed because it will literally make your body and your mind feel better every day. Trust me please. You can do this. There is nothing stopping you. I hope this helps you in your recovery. The very best of luck. God bless!

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@skatesox22 this is said beautifully .. I will for sure show my husband this! Thank you.

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Hello. I want to start off by telling you that you are going to be just fine and what you're feeling is very normal even though it's really scary. I'm sorry you feel so depressed. It's a lot of hurdles recovering from such a major surgery, I know, I also had my transplant 3 weeks ago Monday.
The best advice I can give you is that you must try to understand that you are now at the doctor's mercy. They are there to help you, and you really don't have a choice but to do every single thing that they tell you to do. That includes your diet, exercising, being smart about your body movements. Every. Single. Little. Thing. You are gonna be physically and mentally pushed to the limit, but you need to push past the noise and fear in your head. Give yourself to a higher understanding that "I HAVE to do this. There is no other option." Use those negative feelings and let them work in your favor. Tell your doubts that you aren't gonna be bullied, you're not gonna be beaten. You will prevail because YOU are the strongest part of YOU. Once you can shift your mindset to knowing that nothing can stop you but yourself, things will get easier and your mood will begin to shift to positivity. It will become addictive. Every morning you may wake up stiff until you're more healed up, but you'll be actually excited to push yourself to get out of bed because it will literally make your body and your mind feel better every day. Trust me please. You can do this. There is nothing stopping you. I hope this helps you in your recovery. The very best of luck. God bless!

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Profile picture for ajdo129 @ajdo129

Hi footballmum. My liver transplant was in April 2022. Starting December I have had 4 incidents where all 3 liver enzyme markers have spiked high. The first 3 times I had simple biopsies. The 4th time I had an ultrasound. My liver was doing fine. Mayo is still keeping a close eye on me. I usually have the alksline phosphate enzyme high. I think I am just an anomaly so they keep exploring causes for the spiking.
Just stay in touch with your transplant team, follow your healthy living guidelines. Best of luck, Barbara

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Thank you and I will.

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Profile picture for footballmum @footballmum

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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Hi footballmum. My liver transplant was in April 2022. Starting December I have had 4 incidents where all 3 liver enzyme markers have spiked high. The first 3 times I had simple biopsies. The 4th time I had an ultrasound. My liver was doing fine. Mayo is still keeping a close eye on me. I usually have the alksline phosphate enzyme high. I think I am just an anomaly so they keep exploring causes for the spiking.
Just stay in touch with your transplant team, follow your healthy living guidelines. Best of luck, Barbara

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Profile picture for cromme50 @cromme50

Rejection is gnarly and needs close supervision. Think of your anti-rejection meds as your partners, they allow you to keep this foreign body(the organ) mellowed out and that allows you to live. It can be a roller coaster but you and your team will find what the magic dosage is. It will happen and it will be well worthwhile. Happy summer back at you, honey!

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Hi Vivian, I will definitely look at it that way, thanks again for your input, it really makes a lot of sense when you put it the way you did.💚🌺🌻🌼

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Profile picture for arqui02000 @arqui02000

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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Gracias por responder! You are right, no matter how complicated this all is, it definitely beats the alternative as one only gets a liver transplant when it is the last resort. Each day truly is a Gift! Saludos.

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Profile picture for myfablife @myfablife

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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Rejection is gnarly and needs close supervision. Think of your anti-rejection meds as your partners, they allow you to keep this foreign body(the organ) mellowed out and that allows you to live. It can be a roller coaster but you and your team will find what the magic dosage is. It will happen and it will be well worthwhile. Happy summer back at you, honey!

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Footballmum, yes this happened to me last November . I was in acute liver rejection, I was admitted to the hospital put on high doses of steroids and increased my immunosuppressant's. Today my liver test is stable and hope to start decreasing immunosuppressants. The TP team takes baby steps after rejection.
If they were concerned about rejection they would probably have told u this. Did they increase your immunosuppressant meds? R u getting blood drawn every 2weeks to monitor them.
Best of luck hoping all will stable .💚😊

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