Liver transplant - Let's support each other

You had your transplant and your husband is getting one, too? Wow. You should write a book!

@itsme623,
My experience is that I was relieved to be placed on the liver waiting list. The wait however, was long and I grew sicker as my liver continued to fail. Side effects slowed me down and my kidneys suddenly failed, so I needed dialysis, was listed for a kidney. and continued to wait for the Call. During this time, my husband and I stayed at the Gift of Life House in Rochester, so we had support and companionship from strangers who becamwe like family to us. One morning, as my husband and I were preparing to go to the lobby to get on the shuttle to take me to th dialysis center at Mayo, the phone rang. I will always remember that the time, 6:42 AM, when I heard my transplant surgeon greet me with a cheerful, "Good Morning, Rosemary. How are you this morning?" (fine, I lied because by this time I felt awful all of the time) Then she said something like, "We have organs for you and want to know if you want to come in for surgery today." I feel so silly now, but I replied, " Yes, but first, I had to go to my dialysis treatment that was scheduled". She calmly said to come on to the hospital where the nurses would be waiting for me, and that they would take care of the dialysis as an inpatient. I was so excited that I couldn't think and nearly forgot to grab my prepared bag. We rode the shuttle to the hospital ( 7 blocks away) and I was admitted to the hospital. The nurses took care of everything and made me feel safe and special. And my husband was able to be with me for most of the time.

Are you scheduled for your liver transplant evaluation? Any questions about the process?

It’s been an interesting experience going through this journey. This transplant has changed my life. I’m a very independent person and was not used to all the attention and care I received from Mayo. I was in bad health when first started going down this road. I spent months in the hospital before and after the transplant. Thank goodness there was people who took the time to talk to me at Mayo. I was so ready to go home and literally exhausted. I’m now healing and feeling much better. I still have much to do and look forward to a somewhat normal life.

What do you mean that pre-op and post-op was more than you expected?

Also, I have wondered, what is it like to "get the call"?

I'm not on the list yet, but hope to be soon.

@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.