Liver transplant - Let's support each other

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.

@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.

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.

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.

@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?

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

My name is Joe. As I went through the notifications, I noticed I had overlooked an invitation to share my liver transplant experience with fellow transplant recipients. Well, here I am...
I was Mayo Clinic (Rochester MN) liver transplant #397, having received my gift of life from a then unknown female from Iowa. I was 35 years old at the time. I have lived, thrived, and given back for 31 years and 5 months since that transplant! I have had a few ups and downs, but discovered a hidden gift that some call a talent. I don't see it that way, it's truly a gift. I became a published poet! Many of my poems have been seen and shared on social media, where I help run nearly a dozen transplant related groups.
I was given my gift of life on November 1, 1992! I was on the dosage study for Prograf aka tacrolimus, and back then it was called FK506. I have never experienced an episode of rejection, and met my donor's 2 daughters almost 8 years after my transplant! I am still good friends with the one surviving daughter, and just back in November, visited her for the weekend with my bride of nearly 41 years.
I will post one of the many poems I've written to give you an idea of what I write. Mind you, I call this a gift because of the 300+ pieces I've penned, not one has been edited, and none took longer than 5 minutes to write. I've written on paper, napkins, envelopes, at parties, banquets, while working driving a truck (I pulled over lol) and many other places and situations. Truly this is a gift I was given to say those things that others feel, yet cannot express.
Thank you for this forum, and thank you for reading this far...
Peace
God Bless

@bigjoek, Good Morning. Congratulations on your successful liver transplant. Wow! You will be celebrating 32 years later year, while I will be celebrating 15 years later this month. I can fully identify with the feelings that you have expressed in your poem. Thank you for sharing your post transplant gift for using words to express the beauty of the Gift of Life. As you have already said, " Truly this is a gift I was given to say those things that others feel, yet cannot express."
I am inspired to read of your longevity with a liver transplant. I know that there were some bump along the journey and with being one of the early recipients and early Prograf (tacrolimus) studies, you must be in awe of the advances with the entire world of transplantation.
Joe, How have you managed to remain healthy and protect your transplanted liver for 31+ years? What has worked for you?

Thank you for the response! I have done what I always have, that being following my instincts, and mostly the doctors orders. I have many other medical issues that aren't transplant related, so I keep a close eye on what my body tells me. I have had several near death experiences thanks to that lovely infection called cellulitis... Since my transplant, I've had many major surgeries, none of which thankfully are liver related, except for the cataract, and detached retina surgeries, which are prednisone related.
I guess my best advice is to live life, not in a sheltered environment, but get up, get out, and do life! I spent 10 years as a Scoutmaster for the BSA, camping mostly in a tent one weekend a month 11 months of the year (I live in Illinois so we see a good amount of brutal cold) I am as I said a writer, and a musician! I did a 7 year stint in an oldies (50's-70's) band, and now play guitar and bass for my church praise team. I write pop, Christian, and donor awareness songs too! I'll include a link to one of them here.
My best advice is to push the boundaries of what you think you can do. Currently I'm recovering from spinal fusion surgery, 7 weeks post today. Not the toughest surgery I've had, but it is one of the most challenging!
As for the advances in liver transplant, I am completely in awe. When I was transplanted, the average stay in hospital was 21-26 days, then you were to stay in the Rochester area for 2 months post. I was out of the hospital in 10 days, and home a month and 4 days after my transplant. I not only made it home for Christmas, I made it home for my birthday! With the stats we were given about the length of stay, we didn't think once September passed that I would be home for either. My then 2 sons (I have 3 adopted children now too) were 4 1/2, and 6. I believe my being able to be home for Christmas was the best gift they got that year! For me it sure was!

Peace
God Bless

Sorry I must make a correction. My transplant was in October 2020, not 2024. 🥴See what I mean. Hahahahaha