Liver transplant - Let's support each other

@brishawn24 just weighing in here. I’m 2.5 years post liver transplant. I had five terrible episodes of HE pre transplant and zero after effects of HE post transplant. I am a kind and mild mannered person and when I had HE episodes- I became an entirely different person: rude, mean, stubborn, terrible judgment. I would say terrible things to my family and to paramedics once 911 was called. I would remember almost nothing of these episodes but flashes, like movie scenes. Again, I am back to my mellow self as if it didn’t happen. Amazing how mind and body can heal. All good wishes for you.

Hello Colleen, thank you for responding back to me.
My journey was a very difficult decision. I ultimately decided to do it for my family. If I was alone, I probably would have rode off into the sunset. I also decided to do it for myself eventually. I’m a retired teacher and musician. The transplant made my retirement sooner than I expected. I’m now thinking of returning to teaching. This incredible gift I received from this donor has changed my life. I will forever be grateful.

Welcome, @lalvarez. Is that a drum kit I see in your profile picture?

What a testimonial to your decision to get a liver transplant. It sounds like you prepared yourself as best as possible. None-the-less, until you go through a transplant, how can you really know what to expect.

What was more than you expected pre-op? Post-op? What tips would you offer to someone about to embark on this journey?

I’ve been through hell & back. It’s the best decision I’ve ever made. I had my liver transplant on December 2nd 2023. Pre-op and post-op was more than I expected. My decision was made after many months of research and being uncomfortable with my health. You need to be patient and strong.

Yes, another blessing after transplant is that you no longer need lactulose. Mayo saved my life and I believe I experienced a miracle thanks to Mayo, the staff, my caregiver and a higher power. I'm not very religious but I believe someone or something watches over me.

I am so glad I found these posts. I have HE which seems to ebb and flow. I haven't felt like myself for months. There have been times that I can't do simple addition and I mean exactly that - adding 2 numbers together! I have a disabled son for whom I have to keep up a lot of paperwork in reporting his wages. It used to take a half hour at the very most. Yesterday, it took me all afternoon. I kept printing the wrong paperwork over and over. It is so frustrating. I feel like I'm trying to swim and I keep getting pulled under. I have also snapped at people who didn't deserve it. We went out to dinner the other night with old friends and they had to constantly remind me what I was talking about because I would go blank and stop mid-sentence. As I'm writing this all out, I'm realizing how bad it has gotten. I think I need to pass this on to Justin. He knows I've had it, but doesn't know how bad it is getting. I'm taking lactulose 4 times a day.

I am so happy to hear that! It is very comforting and gives me hope. Thanks for your response. Sending good vibes your way.

I had several episodes of HE pre-trial splat. One severe episode put me into a coma. Since my transplant a year ago my life has improved dramatically. I no longer have to worry about HE. I am much happier and a better person. HE is horrible. Please know that your spouse doesn't realize what is happening and is very confused. After his transplant he will be a different person as long as he forgoes alcohol forever

Good morning from Canada
I received my second chance in October 2024. I too suffered from HE prior to my liver transplant. I was told that those symptoms would go away, but unfortunately that was not the case for me. I still experience memory loss, brain fog and there is definitely a personality change. Everything I've read says Oh it's no big deal it will go away. I think a lot of it depends on how far along you were pre-transplant. I was late stage 4 and had waited a year and a half for my miracle. Hang in there. God has a plan.

Hi, thanks for sharing. Are you post- liver transplant now? Have you had any permanent effects or HE episodes since? I am concerned for my husband who is pre-transplant, and though improving because of continuous dialysis in ICU. It feels like it’s been one long 2 month episode. Hope you’re doing well!