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.

@msfins

BTW how scary was a heart transplant for you? Learning I needed a liver transplant was beyond overwhelming and fearful. I can't even imagine a heart transplant.

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Thanks and it's a bit of a long story but basically I had become to the point where my pacemaker was shocking me so much that I developed this form of PTSD and it was directed at the one device that in the early years saved my life a few times. But it something that's hard at times to explain and please understand I'm not at all suicidal and have never comptiplaited it but I had reached the point that I wanted God to take my life. I do believe that this is not everything there is to life and if I wasn't going to
Have the kind of life I wanted then I wanted it over. So when my doctor suggested, as a precaution to be ready if we ever needed it, to be evaluated for a transplant. We'll I was already in the hospital to try a few more ablation to fix my old heart and he said I arranged to get you over to Mayo for an evaluation. So off to Mayo clinic Phoenix for an eval. Well except for a few days after the eval I never left before I got the transplant. My heart was not responding to the latest ablation and it was going downhill fast. That was the first
Week of Dec 2017 and by Jan 2018 I had my new Heart. As I said during that 3 weeks I was getting shocked so much by my pacemaker they ended up shutting it off and just pumping me with drugs to keep my heart going. Still hoping to find the cause of my arrhythmias they even tried a MRI which usually is not an option if you have a pacemaker. So that's my story in a nut shell and honestly I don't know your feeling about God but I'm convinced he had his Hands in getting me the perfect Heart. So I need to close for now but can write again in a bit. Grandkids are calling

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@danab

Thanks and it's a bit of a long story but basically I had become to the point where my pacemaker was shocking me so much that I developed this form of PTSD and it was directed at the one device that in the early years saved my life a few times. But it something that's hard at times to explain and please understand I'm not at all suicidal and have never comptiplaited it but I had reached the point that I wanted God to take my life. I do believe that this is not everything there is to life and if I wasn't going to
Have the kind of life I wanted then I wanted it over. So when my doctor suggested, as a precaution to be ready if we ever needed it, to be evaluated for a transplant. We'll I was already in the hospital to try a few more ablation to fix my old heart and he said I arranged to get you over to Mayo for an evaluation. So off to Mayo clinic Phoenix for an eval. Well except for a few days after the eval I never left before I got the transplant. My heart was not responding to the latest ablation and it was going downhill fast. That was the first
Week of Dec 2017 and by Jan 2018 I had my new Heart. As I said during that 3 weeks I was getting shocked so much by my pacemaker they ended up shutting it off and just pumping me with drugs to keep my heart going. Still hoping to find the cause of my arrhythmias they even tried a MRI which usually is not an option if you have a pacemaker. So that's my story in a nut shell and honestly I don't know your feeling about God but I'm convinced he had his Hands in getting me the perfect Heart. So I need to close for now but can write again in a bit. Grandkids are calling

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Thanks, Dana, and go be with those sweet grandchildren.

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@estrada53

Thanks, Dana, and go be with those sweet grandchildren.

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Thanks I do this video chat with them every Tuesday afternoon at 330 and I don't like missing it. With all this crap going around these days Praise the Lord for technology

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I'm sure you're a great grandpa!

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@msfins

Thank you so much for sharing. Your journal idea is awesome. My Chaplin friend I made at the hospital suggested something similar as well. Its always helpful hearing everyone's stories and how they got through everything. How are you feeling now? Have you been able to ride your horse yet?

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@msfins, I hope that you are enjoying a sunny afternoon like I am today. Please, let us know how you are feeling now that you are beyond the first 3 weeks of surgery and recovery.
Have you attempted to start a journal? What are your thoughts about journaling as a way to support yourself and move through the difficulties that you have encountered?

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I had a liver/kidney transplant in February 2021. My liver worked fine right away but my kidney didn't work for nearly two weeks. Talk about stress and depression, wow. But I kept my faith and things started getting better. Then one day I called for help to go to the bathroom, sat up to wait for help, hanging my feet off the bed and my phone slipped from my gown. Twisting to catch it I broke my L4 vertebrae in my back on top of my other problems. But I hung in there and got better. Yes depression tried to enter my life then I remembered that I now have a second chance at life because someone lost theirs that I might live and I thanked God and things seemed better.
A few months later they told me my new kidney was failing and they would try to get me on the list again. Through the grace of God I was blessed with another kidney in November of 2021. I am now feeling the best I have in years my friend. Just hang in there and let nature take its course. Trust me healing takes time. Try taking your mind off things when you get down and thank God for the blessings you have received. Without the liver you probably would be dead now as would I.
Your water retention will go away.
Hope this helps 🙏

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@firecat

I had a liver/kidney transplant in February 2021. My liver worked fine right away but my kidney didn't work for nearly two weeks. Talk about stress and depression, wow. But I kept my faith and things started getting better. Then one day I called for help to go to the bathroom, sat up to wait for help, hanging my feet off the bed and my phone slipped from my gown. Twisting to catch it I broke my L4 vertebrae in my back on top of my other problems. But I hung in there and got better. Yes depression tried to enter my life then I remembered that I now have a second chance at life because someone lost theirs that I might live and I thanked God and things seemed better.
A few months later they told me my new kidney was failing and they would try to get me on the list again. Through the grace of God I was blessed with another kidney in November of 2021. I am now feeling the best I have in years my friend. Just hang in there and let nature take its course. Trust me healing takes time. Try taking your mind off things when you get down and thank God for the blessings you have received. Without the liver you probably would be dead now as would I.
Your water retention will go away.
Hope this helps 🙏

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Hi, @firecat and Welcome to Connect! What an amazing experience you have shared and what a beautiful tribute to your faith and your commitment to hanging i and getting better. It sounds like you are well on the road to your new life with your new organs.
I am also a liver and kidney transplant recipient - so I am especially happy to meet you. I got my transplant in 2009 and both are happy (my doctor's words). I was extremely weak before my transplant, in fact I had been transported to Mayo Rochester from ICU in Kentucky and needed emergency dialysis due to acute (hepatorenal) kidney failure. My liver failed due to Primary Sclerosing Cholangitis (PSC) which was diagnosed aprox 8 years earlier.
I am happy that you are feeling so good now! What are some things that you are able to enjoy now that you are feeling better?

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@rosemarya

Hi, @firecat and Welcome to Connect! What an amazing experience you have shared and what a beautiful tribute to your faith and your commitment to hanging i and getting better. It sounds like you are well on the road to your new life with your new organs.
I am also a liver and kidney transplant recipient - so I am especially happy to meet you. I got my transplant in 2009 and both are happy (my doctor's words). I was extremely weak before my transplant, in fact I had been transported to Mayo Rochester from ICU in Kentucky and needed emergency dialysis due to acute (hepatorenal) kidney failure. My liver failed due to Primary Sclerosing Cholangitis (PSC) which was diagnosed aprox 8 years earlier.
I am happy that you are feeling so good now! What are some things that you are able to enjoy now that you are feeling better?

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Hello Rose,
Wow, I wasn't even diagnosed yet in 2009! So glad to hear your innards are happy yet after all these years. I was diagnosed in 2014 with cirrhosis that they were just keeping an eye on. I used to drink quite a bit but quit in 2011. In 2020 my liver started going south taking my kidneys with it. I didn't pee for months having a parasenthesis twice a week to remove an average of 12 liters of fluid per week and at the end dialysis 3 times a week. What a schedule to stay alive. My last test to achieve transplant status was a heart cath that shut my kidneys down from the contrast. It turned out to be a blessing in disguise because it changed my meld score from 25 to 29. Two weeks later a got gifted with my first transplant two days before my birthday. How's that for a gift? Turned wrong in the hospital bed and fractured my L4 vertebrae to yet! Yes God thru many challenges my way.
You asked what I am enjoying now? Thanking God by rejoining my church choir no. 1, doing fun things with my wife again, watching my mother continue to stay healthy at 89, watching my two sons ( now men) one single and one married a ND has blessed us with two beautiful grandchildren.
I live in northern Wisconsin and was transplanted at UW Hospital and Clinic in Madison.
Being from the north my hobbies are ATVING and Snowmobiling on the hundreds of miles of trails we are blessed with living in a national forest.
Enough about me. I hope you continue to enjoy your second chance at life and continue to cheer on others as ourselves.
Best wishes, FireCat

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Good Morning,
I understand how you feel!! I am 9 months post LT and feel decent, but I remember in the beginning feeling like “when will I ever feel better”. I got depressed as well. I was weak, nauseous, hated the taste of food, fatigued and generally felt like crap. I even had to go back into the hospital a month after transplant because of malnutrition. They put a feeding tube in me. That was awful.
At 3 months I felt a big turnaround. I was eating more, getting stronger, and generally felt better.

I remember feeling the same way- somewhat guilty for feeling depressed. I started seeing a therapist when I found out I had cancer. She is also a cancer survivor. I still see her occasionally. She was a lifesaver!!
Just take a day at a time and know you will feel better. Forums like this have been very helpful for me. Take Care

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@firecat

I had a liver/kidney transplant in February 2021. My liver worked fine right away but my kidney didn't work for nearly two weeks. Talk about stress and depression, wow. But I kept my faith and things started getting better. Then one day I called for help to go to the bathroom, sat up to wait for help, hanging my feet off the bed and my phone slipped from my gown. Twisting to catch it I broke my L4 vertebrae in my back on top of my other problems. But I hung in there and got better. Yes depression tried to enter my life then I remembered that I now have a second chance at life because someone lost theirs that I might live and I thanked God and things seemed better.
A few months later they told me my new kidney was failing and they would try to get me on the list again. Through the grace of God I was blessed with another kidney in November of 2021. I am now feeling the best I have in years my friend. Just hang in there and let nature take its course. Trust me healing takes time. Try taking your mind off things when you get down and thank God for the blessings you have received. Without the liver you probably would be dead now as would I.
Your water retention will go away.
Hope this helps 🙏

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@arqui02000, I want you to meet @firecat because you and he have something on common - a 2nd transplant to replace your 1st one. His is a kidney, while yours is a liver, the emotions and the feelings about a second transplant are surely similar.
-You can click the "In response to" and read his experience.

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