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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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arqui02000 | @arqui02000 | Oct 3, 2022
In reply to @firecat "Hello Rose, Wow, I wasn't even diagnosed yet in 2009! So glad to hear your innards..." + (show)
@firecat

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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hi FireCat some one asked me to contact you she is RoseMary and I believe we have some in common I am 66 years old and had a liver transplant since February 14-2020 all this time follow directions of Doctor and put all my energy I have to recuperate. I was extremely happy and to be grateful with God. After 9 ERCP because of my bile ducts on December 2021 all my liver functions were fine but in February 2022 they found our I have Portal Hypertension and my transplanted liver start with cirrosis. Fell bad at that time buy now I have faith in God and I accepted God decision but still fighting and follow my Doctor guide which is Medicine to control the Portal Hypertension, then if this does not work, next the TIPS (bypass the liver) and in a long run the second transplant

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firecat | @firecat | Oct 3, 2022
In reply to @arqui02000 "hi FireCat some one asked me to contact you she is RoseMary and I believe we..." + (show)
@arqui02000

hi FireCat some one asked me to contact you she is RoseMary and I believe we have some in common I am 66 years old and had a liver transplant since February 14-2020 all this time follow directions of Doctor and put all my energy I have to recuperate. I was extremely happy and to be grateful with God. After 9 ERCP because of my bile ducts on December 2021 all my liver functions were fine but in February 2022 they found our I have Portal Hypertension and my transplanted liver start with cirrosis. Fell bad at that time buy now I have faith in God and I accepted God decision but still fighting and follow my Doctor guide which is Medicine to control the Portal Hypertension, then if this does not work, next the TIPS (bypass the liver) and in a long run the second transplant

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Hello Sir,
Remember first, God has a plan for us or we wouldn't have been given a chance at a new life. He hasn't yet shared it with us, but we WILL know when we need to step up!
We are close in age as I am 67. I received my transplants of a liver and kidney 3 days before my birthday on February 10,2021. I had an ERCP 6 months ago to open up a bile duct stricture that happened over a year after transplant. I have another one scheduled for October 20th to remove the stint that they installed.
Sorry to hear of the scarring of your new liver. I was a drinker years ago that set off my cirrhosis which in turn affected my portal vein and eventually killed my kidneys.
I hope yours doesn't start to leak fluid into your body cavity. Towards the end prior to transplant I had to receive a parasenthesis twice a week as I didn't pee anymore. Weekly average of 12 liters. Not to scare you but that's what I had go through.
Your liver complications suck. My first kidney let me down. It did function well enough to avoid dialysis, but not to do the job required.
As I said earlier in this letter, God must have a plan for us. We both know how hard it is to be blessed with an organ, but I was blessed with 2 kidneys in 9 months as on November 12th I was so blessed with one.
Have faith in God my friend and I am sure you will receive that second liver.
Miracles happen everyday, and right now we are two of them! Always remember that my friend.
Better days lie ahead for you.
FireCat

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lovemygsd | @lovemygsd | Oct 7, 2022

I got mine in 2015. I was in serious pain for six months. I was 57. They told me one month of recovery for every 10 year increment in age you are.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 7, 2022
In reply to @lovemygsd "I got mine in 2015. I was in serious pain for six months. I was 57...." + (show)
@lovemygsd

I got mine in 2015. I was in serious pain for six months. I was 57. They told me one month of recovery for every 10 year increment in age you are.

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@lovemygsd - Good morning and Welcome! Thank you for sharing this 'healing -time-formula' that was shared with you. I am happy that it worked well for you and that you are now 7 years past the serious pain that you have mentioned.

Lovemygsd, Did you have a liver transplant in 2015? Was the serious pain that you have mentioned related to surgery recovery, or were there any other complications? How are you doing now?

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arqui02000 | @arqui02000 | Oct 7, 2022

I had a liver transplant since May 14-2020, almost 2.5 years all I want to advise is BE PATIENT and keep the doctors advice and have faith that God will help you. Keep working hard I am still working on my liver transplant

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healingnow | @healingnow | Nov 30, 2022
In reply to @msfins "Thank you for that. It is a very powerful thing. I no we all got this..." + (show)
@msfins

Thank you for that. It is a very powerful thing. I no we all got this gift for a reason. I never doubt that. I just need to work on focusing on that reason as well and try to ignore my negative thoughts. What do you do when a negative thought pops in your head? Or if you're having a bad day?

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Hi @msfins
Negative thoughts pop into my head all the time. I've found the best way to deal with them is not to push them away or ignore them, but acknowledge them, honor them in a way. Then, once I develop a friendlier relationship with my negative thoughts, I find it much easier to deliberately move my attention onto something more positive. But I can't do this until I have allowed the negative thoughts to be there. Congratulations on your transplant!

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dlovdahl | @dlovdahl | Dec 1, 2022

Hi, I just had my kidney transplant on October 27 and my motto to keep positive is in the coin and meaning behind it in the other attachment.

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patrickski98 | @patrickski98 | Dec 2, 2022

Although patience is difficult it is you friend right now. I am four months post-transplant and am just starting feel “good”. Not normal but decent. Is not not a doc so I will not presume to give you medical advice but having gone through it I hope to encourage you to stay strong. The doctors can give you something to help with depression I presume. I would talk with them. Best of luck to you.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Dec 2, 2022
In reply to @healingnow "Hi @msfins Negative thoughts pop into my head all the time. I've found the best way..." + (show)
@healingnow

Hi @msfins
Negative thoughts pop into my head all the time. I've found the best way to deal with them is not to push them away or ignore them, but acknowledge them, honor them in a way. Then, once I develop a friendlier relationship with my negative thoughts, I find it much easier to deliberately move my attention onto something more positive. But I can't do this until I have allowed the negative thoughts to be there. Congratulations on your transplant!

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@healingnow, I want to welcome you to Connect. I see that this is your first post, and it is a powerful one! Thank you.

Your member name, "Healingnow", intrigues me. Are you healing now? Are you a transplant patient? What brings you to Connect?

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Dec 2, 2022
In reply to @patrickski98 "Although patience is difficult it is you friend right now. I am four months post-transplant and..." + (show)
@patrickski98

Although patience is difficult it is you friend right now. I am four months post-transplant and am just starting feel “good”. Not normal but decent. Is not not a doc so I will not presume to give you medical advice but having gone through it I hope to encourage you to stay strong. The doctors can give you something to help with depression I presume. I would talk with them. Best of luck to you.

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@patrickski98, Welcome to Connect and Congratulations on your recent liver transplant! I transplanted in 2009, and I remember being able to be at son's wedding 5 months after my transplant. I was skin and bones, and still weak and needed lots of rest. But I was so very happy have received my gift of life and able to be at that event.

How are you getting along with your recovery? Do you have any questions about resuming life with your new organ?

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