Liver transplant - Let's support each other

My wife is also experiencing the shakes and difficulty breathing on the same drugs. Her transplant was January 2025, so many tell us to be patient, as many patients don’t feel to be themselves until a year. Stay strong, you got this, we all got this!

My husband had a liver transplant at the end of April at the Mayo Clinic in Jacksonville. Thanks to God and the Excellent Team, his surgery went well. He is an optimistic and positive person; also he also walks every day like two times in the treadmill but he is tired, sleeps a lot and I have noticed that he is short of breath and his hands are shaking. We know that the Tacrolimus and Mycophenolate cause several secondary effects but I’m still worry about his health. The liver enzymes are normal. Thank you for sharing your experiences !!!

I have never had any breathing issues. I do know it takes time to get everything working properly. A transplant is a very big surgery and it takes a toll on your body and 6 months isn’t a very long time. If her tests are good hopefully the rest of it will get better. It was at least a year for me to really start feeling like my old self. It all takes time. A transplant is a very big surgery and it takes a long time to heal and to get the right drugs that will work for her. Prayers that everything turns around for her.

@rachel5239, My wife is 6 months post liver transplant. Our team gave her an option to have a liver transplant as she had NET, and the only remaining area with NET was her liver. The team felt it was her best chance to give her the best result over time. She had the transplant in January 2025, and has had 4 follow-up surgeries to fix items. Then had fluid around the lungs for about 5 months which was drained repeatedly. Now she is still dealing with a breathing issue from the start actually, that our team just says it takes time to heal and resolve. She can only walk about 30 yards or so, and has to sit down. She spends most of her day in a chair worried about losing her breath. What if any advice/experience do you have regarding the breathing issue, if so how long did it last, and what did you do to improve it? All her blood tests are good, there doesn't appear to be major issues with the function of the new liver.

I am 38 years post transplant. I have had a lot of experience with everything related to transplant.

I was on laculose high ammonia and was out of it and given 5 days to live 2 1/2 years later a whole new life after my 13 hour surgery I had a stroke seizure and brain bleed and just recently got off Keppra I’m only down to 3 meds go to the gym everyday and feel better, I’ll never be the same but I’m enjoying life , I feel your pain in the journey but it’s gets way better

Hi, I'm post transplant and just had my 1 year anniversary. Before the transplant things were kind of wild. I had increased ast and alt numbers that went higher every year, this was from NASH, ( non alcoholic Steto Hepatitis). Two years ago, I thought I had a stomach flu, it got to the point where I went to the hospital. It wasn't stomach fly, it was my liver was no longer filtering out the amonia in my body. I was told I was only a day away from dying. My body had been flooded by amonia and caused hallucinations, speech impairments, and some brain damage. I was kept on laculose, to remove the amonia up until the day of my transplant. It took me over a year to recover from this. There are many other small things that happen, but this one was pretty difficult.

I was just diagnosed with decompensated liver cirrhosis n I'm gonna b going thru liver evaluation test to get on transplant list, I gotta quit drinking, (lil hard) I get fluids drained off my stomach every week, it's scary news getting diagnosed n don't know what to expect or do.

@brenda62 - Welcome to Connect. and Congratulations on your new liver transplant! I am so happy that you were blessed to be able to receive your transplant in time to return to a renewed life.
Will you share more about ypour journey: How is your recovery coming along? Was your liver failure sudden? What was it like to be whisked from death's doot to a successful liver transplant?

This is beautiful, @tjenna1963. Thank you for sharing it with us - and Welcome to Connect.
Are you a recipient or are you a caregiver?