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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Hi, I am 🙏🏻🙏🏻🙏🏻 that if my numbers continue to be stable they will start decreasing soon. I am getting labs once a month. I think if I could get on less I would feel stronger they make me fill tired/could be the heat also.. I know the prograf is doing a number on my kidneys.
Yes HOPE is a perfect for TP patients.
I hope u r well💚😎 also.

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@myfablife

Hi, I am 🙏🏻🙏🏻🙏🏻 that if my numbers continue to be stable they will start decreasing soon. I am getting labs once a month. I think if I could get on less I would feel stronger they make me fill tired/could be the heat also.. I know the prograf is doing a number on my kidneys.
Yes HOPE is a perfect for TP patients.
I hope u r well💚😎 also.

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Hurray for stable lab results! As I was reading your response and your tiredness, heat, and kidneys I was reminded of the importance of staying hydrated. I would not be surprised if your tiredness is partially related to the recent rejection, higher doses of meds, and also the heat and the desire to get back to a more normal active life. While I have been fortunate to not have experienced any rejection episode, I still find the need to nap and take an easy day.
@myfablife, I am happy to say that I am doing well. I was at Mayo Rochester in May for my annual review, and got the 'green light' to "Keep doing what I am doing and to return in one year! "

Please keep in touch and send updates.

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@arqui02000

Eso es lo importante sentirse viva solo camine lo más q pueda no exagere en ejercicio su cuerpo solito lo pide a mi después de 3 días de mi transplante me mandaron a caminar y pues así lo hice y poco a poco fui extendiendo el tiempo de caminar a las dos semanas en Arizona Mayo se sorprendieron de la recuperación regrese a California y seguí caminando solamente eso ayuda mucho de ahí hasta el día de hoy he subido peso pero controlando RECUERDE su vida ya no será la misma NO ES SU HÍGADO es un órgano implantado y necesita tiempo así que CUÍDELO a mi en febrero de este año me dijeron que mi hígado transplantado está empezando con CIRROSIS de nuevo pero yo sigo peleando hasta q DIOS PERMITA que el hígado aguante y pues esperare un segundo transplante si DIOS ME LO PERMITE pero sigo agradecido

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Thank you for your words. I keep thinking this is my liver and your reminder that it is not will help me. I also suffer daily from thinking I'll be back to the old me. That person does not exist and I find it hard to identify with this new me. I don't want to be known as a sick person. I want to be myself.
You have inspired me to continue exercising. To hot to walk much in Arizona right now so I swim.
You continue to survive with God's help anything is possible 🙏

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@myfablife

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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So glad I found your reply. Now 1 month has passed. Been in the hospital for high AST,ALT,GGT. They found a stricture in one of the bile ducts and did a liver biopsy, my first. Scheduled an ERCP which was canceled because the stricture was not life threatening. Hmm. Wonder when it becomes so.
I have begun eating 3 meals a day to keep liver busy and feel it's helped but have to force it down. Still no stamina and swimming makes me more tired but I do it
. My outlook is positive today ✨️
Thank you for helping me see the brighter side of things!

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@rosemarya

Hurray for stable lab results! As I was reading your response and your tiredness, heat, and kidneys I was reminded of the importance of staying hydrated. I would not be surprised if your tiredness is partially related to the recent rejection, higher doses of meds, and also the heat and the desire to get back to a more normal active life. While I have been fortunate to not have experienced any rejection episode, I still find the need to nap and take an easy day.
@myfablife, I am happy to say that I am doing well. I was at Mayo Rochester in May for my annual review, and got the 'green light' to "Keep doing what I am doing and to return in one year! "

Please keep in touch and send updates.

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Hi Rosemary, thank you , I am so happy for your good news, I hope to be going annually soon, I know I will have to have monthly labs for a while but I am ok with that.
I am very fortunate to only be on immunosuppressants meds, I hope it stays that way and the meds don’t give me other problems.
Life is good💚💙🌻😊

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@sec1205

So glad I found your reply. Now 1 month has passed. Been in the hospital for high AST,ALT,GGT. They found a stricture in one of the bile ducts and did a liver biopsy, my first. Scheduled an ERCP which was canceled because the stricture was not life threatening. Hmm. Wonder when it becomes so.
I have begun eating 3 meals a day to keep liver busy and feel it's helped but have to force it down. Still no stamina and swimming makes me more tired but I do it
. My outlook is positive today ✨️
Thank you for helping me see the brighter side of things!

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Stay strong u got this.. I hope the biopsy was good, they wanted to do one on me but I am so thankful we did not have to. My numbers are stable from my rejection I had last October.
😊💚❤️🌻

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@myfablife

Stay strong u got this.. I hope the biopsy was good, they wanted to do one on me but I am so thankful we did not have to. My numbers are stable from my rejection I had last October.
😊💚❤️🌻

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Happy to hear you are stable. I'll get there! Biopsy showed no rejection, fibrosis or chirossis. All great news. 👍
We just keep on going one day at a time. 😊

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Yay celebrate, that is wonderful news🥳🥳🎉🎉so very HAPPY for you!

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@arqui02000

Eso es lo importante sentirse viva solo camine lo más q pueda no exagere en ejercicio su cuerpo solito lo pide a mi después de 3 días de mi transplante me mandaron a caminar y pues así lo hice y poco a poco fui extendiendo el tiempo de caminar a las dos semanas en Arizona Mayo se sorprendieron de la recuperación regrese a California y seguí caminando solamente eso ayuda mucho de ahí hasta el día de hoy he subido peso pero controlando RECUERDE su vida ya no será la misma NO ES SU HÍGADO es un órgano implantado y necesita tiempo así que CUÍDELO a mi en febrero de este año me dijeron que mi hígado transplantado está empezando con CIRROSIS de nuevo pero yo sigo peleando hasta q DIOS PERMITA que el hígado aguante y pues esperare un segundo transplante si DIOS ME LO PERMITE pero sigo agradecido

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Sabes porque cirrosis ja volvio?

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@ehs6855

@rosemarya
Hi Rosemary,
My name is Elaine and today is my 30 Year Anniversary of having my Liver Transplant❤️🙏🏻❤️God blessed me with a new liver on May 29th, 1993 at Emory University Hospital in Atlanta, Ga. I am very happy to be alive and you will be too once you get through a few more months and decide you aren't a freak and you are actually going to live. You may look & feel different now but things will go back to mostly normal or a “New Normal” sometime soon !! You’ve been thru major life altering surgery and the more you work at being better, the better you’ll start to get😊
Liver Transplants hadn’t been around for too long when I had mine and people didn’t know what to say or do when they found out I’d had a Liver Transplant. It was so nice once I started going to the Transplant Clinic because I was able to sit and talk to other Post Liver Transplant Patients. It helped immensely to see how they were doing and ask questions to someone who new first hand. It was also nice to see they had and were recovering like the doctors said. One person told me that I would not feel normal until after One Year. I wondered if that could be true, but he was close. I wasn’t yellow any longer and I had lost a lot of the puffiness, but I still had chipmunk cheeks 😉 It took me a while to accept the new me! However, I was alive and I was able to be with my children, husband and family and they helped me find the new me 😉 Once I started to do my daily walk around the neighborhood, I started talking to people and reconnecting with old friends and making new friends. They were all amazed at how well I was doing and wanted to know more about who gave me the liver etc.

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Hello Elaine, my name is Vivian and I have my 25th liver transplant anniversary coming up in a month. Indeed it is a privilege to have received the Gift of Life and our post transplant longevity is proof that we are good stewards to this Gift. It is a wild and scary ride at the beginning but eventually we need to remember to live our best life within the parameters of post transplant life but not allowing the transplant to become who we are. We are more than the transplant. It is nice to "meet" another long timer and to hopefully give newer transplant recipients the assurance that this is not a sprint, this is a "go steady and smell the roses" adventure with many more years ahead. It truly gets easier until you don't even think about it.

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