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.

I was in a similar position after my deceased donor liver transplant. It took 4 months for me to start feeling better, but things got better quickly after the internal healing was completed. I've learned the healing timeframe is different for everyone and my 4 months seems to be longer than most. I described that timeframe as an emotional rollercoaster caused by your body dealing with the medicine and low energy levels. For me, learning this was normal helped immensely.

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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, I concur that this is a beautifully written and very helpful post to anyone about to have or who has just had a transplant. I encourage you to add your story to this discussion that @rosemarya started a while back:
- Organ Donation and Transplant: What is Your story?https://connect.mayoclinic.org/discussion/organ-donation-and-transplant-what-is-your-story/

You're almost 5 weeks out from transplant now. How are you doing now?

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Profile picture for Karen51 @karen51

Except for my husband my family virtually abandoned me before and after transplant. My parents had died. My in-laws were suspicious and stayed far away. My siblings thought having HepC was nothing to worry about. Even after the transplant they became even more distant. They had no understanding of the toil a transplant takes on you both mentally and physically. They have chosen not to understand. I live with this every day. Be thankful for those who support you.

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@karen51 hi, I sure am glad you’re here then to get support and love from this group. Like family, sometimes we have to choose our own. Love to you.

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Hi I’m just on the liver transplant list but I have a friend 8 years post transplant & she is living a full life traveling, working out gently at a gym, living normally as possible. It eases up with time. Acceptance is the key. Get help with depression if you already aren’t. You are not alone.

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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 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.

REPLY

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!

REPLY
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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