Liver transplant - Let's support each other

I’m a 3 month post op transplant recipient at Mayo in Jacksonville. Happy to address any questions you have. I wish I new about this site when I was so scared last year. Everything moved so quickly for me. I was only diagnosed last year and here I am back at work post transplant. Sounds simple and great… but it is HARD. Not just physically, but mentally as well for sure. I’m happy to tell you about my experience if you have questions. I’m still going back to Mayo for testing and outpatient procedures. I wish you nothing but the best. Mayo in Jacksonville is fantastic. I stayed in an apartment style monthly rental to recover post op for the 21 days they request as I live 3 hours away. It’s a new life you’ll be getting. Precious and wonderful. Stay well!

@charliepuma, I'm wondering if you saw the response that I posted a few days ago. I understand concern and uncertainty about reading that chart. I caution you to keep in mind that a chart is a data/numerical reference. And it does not indicate a true picture of an individual patient's mortality which can be frightening. I hope that you will discuss this with your medical team. When will you be able to talk to your doctor about your concerns?

@mbentley, I am in Danville. I was originally listed at UK, but when my PSC (Primary Sclerosing Cholangitis) turned ugly, I was referred to Mayo in Rochester. In fact I was flown out of ICU and my husband and I lived in Rochester at the Gift of Life transplant House from late Feb - late May 2009. We drive the round trip annually for my yearly check-up.

@lindsay208, Welcome to Connect, and to the Liver Transplant support Group! We are all here to learn from each other by sharing our experiences, and I know that very soon, you will find yourself surrounded members who are here to support you.
I would suggest that you settle in a comfortable chair, and scroll back to Feb 1 of this discussion. You will soon realize that you are not alone and you can read, react with emoji, or engage in conversation.

Lindsay, What questions do you have? How can we be of assistance to you?

Here are a few additional Support Groups related to Liver Cancer:
-Liver cancer: I'm weighing treatment options including transplant https://connect.mayoclinic.org/discussion/liver-cancer-1/
-Anyone waiting for liver transplant and diagnosed with liver cancer?
https://connect.mayoclinic.org/discussion/liver-transplant-6/

I’m in Louisiville area now.
My evaluation was completed I hope last Friday. Wednesday night the committee meets.
We have been driving back and forth (12) hours one way. Two weeks in February and a week in March.
If everything works we plan to get a condo in the Jacksonville area.
We researched for the best place. We had my Baptist health family doctor and I set up evaluation at Mayo Jacksonville as we felt it may be the best area to quickly receive the TP.
I have HCC also at 2 cm so we’re hopeful of 6 months I will qualify more.

@charliepuma, I'm wondering if you saw the response that I posted a few days ago. I understand concern and uncertainty about reading that chart. I caution you to keep in mind that a chart is a data/numerical reference. And it does not indicate a true picture of an individual patient's mortality which can be frightening. I hope that you will discuss this with your medical team. When will you be able to talk to your doctor about your concerns?

@mbentley, I am in Danville. I was originally listed at UK, but when my PSC (Primary Sclerosing Cholangitis) turned ugly, I was referred to Mayo in Rochester. In fact I was flown out of ICU and my husband and I lived in Rochester at the Gift of Life transplant House from late Feb - late May 2009. We drive the round trip annually for my yearly check-up.

@lindsay208, Welcome to Connect, and to the Liver Transplant support Group! We are all here to learn from each other by sharing our experiences, and I know that very soon, you will find yourself surrounded members who are here to support you.
I would suggest that you settle in a comfortable chair, and scroll back to Feb 1 of this discussion. You will soon realize that you are not alone and you can read, react with emoji, or engage in conversation.

Lindsay, What questions do you have? How can we be of assistance to you?

Here are a few additional Support Groups related to Liver Cancer:
-Liver cancer: I'm weighing treatment options including transplant https://connect.mayoclinic.org/discussion/liver-cancer-1/
-Anyone waiting for liver transplant and diagnosed with liver cancer?
https://connect.mayoclinic.org/discussion/liver-transplant-6/

Hi, @mbentley. Welcome to Connect. I imagine that tonight is going to be a sleepless night as you wait to get a notification from the Transplant Committee. I hope that tomorrow night you will sleep peacefully, with decision and being listed. It is both frightening and exciting.

@parrot53, @mbentley, @ajdo129, have provided helpful information, already.
My transplant was at Mayo in Rochester, and my call was from my transplant surgeon. It came at 6:42 AM, and she asked me how I felt and if I was ready to have transplant surgery because they had organs for me. She told me to come right on the hospital, and to report to the transplant desk, and that the nurses would be waiting for me and take care of everything. (I must note that my husband and I were living at the Gift of Life Transplant House, only 7 blocks away with a patient shuttle.) So I just had to show up...and Mayo took care of everything. Plus my husband was always nearby or with me up until I was taken to surgery - and he was with me in recovery.

Your nurse is going to guide you and your spouse/caregiver through every step of waiting process. Once you are on the active transplant list. you will have the opportunity to ask your questions about the specifics at Mayo Jacksonville. There will be lots of information, and you will likely feel overwhelmed at times. That's okay because you just need to take care of you while the nurse(s) and doctor(s) guide you through every step.

Mbently, I live in central Kentucky, and was transferred to Mayo MN by my KY transplant dept. If you are comfortable share - Have you been a patient at Mayo in Jacksonville for a while? Or are you in Jacksonville because of the transplant?

@rosemarya I recently was informed by my Liver Transplant Team that they no longer do Living Donor Liver Transplants at Mayo Clinic Jacksonville. It sort of caught me off guard and I completely forgot to ask if that was also the same at the other two Mayo Clinic locations. Does anyone on here know?

To those who wonder what happens next after you ate told your MELD score us high (mine was 26). The nurse coordinator told me Friday evening my MELD score then said the Organ Procurement Team will call me when they find a match. Much to my surprise less then 48 hours later the procurement team (not connected to Mayo) had a whole liver match who was brain dead. The family planned to take their lived one off life support on Monday. Monday early evening after the liver was checked for any concerns I got a call to be st Mayo Phoenix in 30 minutes. My surgeon transplanted late that night and into Tuesday morning. Surgery is 2nd most complicated that Mayo does and it takes 4 to 5 hours. My primary caretaker was texted at 2:20 a.m. "Old liver out. New liver in". Recovery is a couple of days in ICU and you are well medicated and observed frequently. Then you move to a regular unit to continue recovery. If you are interested I can tell you more details about post surgery. Hope this helps, Barbara