Liver transplant - Let's support each other

On Tuesday 5/17/22 my husband got his cancer exception points bringing his MELD score to 26. At 3:05 am we got the call we had a liver. They told us to try to get to Mayo Clinic in Jax Fl by 6:30 am we got there at 6. We got the paperwork going and initial exam done. Then my husband had to take a Covid test and it came back virus detected. We were shocked for he had no symptoms and he had been boosted 5 months ago. We were scheduled to get our booster this weekend. Needless to say we didn’t get the liver. We were devastated. We had been so high then felt like we took a a nose dive. By the way I am negative.

Has this happened to anyone else?

Hi Ginger & welcome to Mayo Jacksonville. Your husband could not be at a better hospital. I am brand new to this group. I received my liver transplant on 2/28/22 - so just about 3 months ago. Absolutely amazing! I haven’t felt this good in over 2 years. My natural meld was a 19, but I was eligible for 10 Exception points given the rarity of my condition, and was able to increase my meld up to 25 (2 points below the average Mayo transplant score).
I was listed for 1 year at Mass General before being advised to come to Mayo. I had a few dry runs at MGH before they recommended I come to Jacksonville. I waited 7 months here, and had several dry runs before my final miracle arrived. I am forever grateful to my donor’s family.

Mayo has a weekly support group that used to meet in person, but because of Covid is now done on Zoom.
I found this group to be immensely helpful & supportive as I waited for transplant. The group consists of both pre & post liver transplant patients. I have made some incredible friends thru this, and several have acted as my mentors helping me with both the emotional & physical aspects of liver transplants.
I recommend you reach out to Mike Womack at Mayo and he can provide you with the Zoom link and details on the group. Mike is the social worker who moderates this group. We meet on Tuesdays at 11am for 1 hr. I know it helped me immensely as I waited for transplant.

I now live locally here in Jacksonville. My wife and I liked it so much we re-located here. I would be happy to meet or speak with you and your husband if that would be helpful.
Like Brian - I want to give back to help others navigate this process.
GerryP

Hi @gingercorless,

Sorry for the late reply as I hadn’t seen your response. At the time I was listed I was at 26 however the week before I was at 22. It was explained to us that ones MELD score goes up and down and can sometimes even be different at different times of the day. We were told to not put too much concern into the MELD as other indicators also factor in to determine listing. When I was asked to stay and get listed they explained that the DR’s said they believed that I was much sicker than my score, based off of several other factors. So, I wouldn’t get discouraged and from what I have heard cancer points will also factor in a big way.

I wish you both the best of luck and will pray that your wait time is soon to be over. Rest assured, once the time comes that you will both be treated very well. I can’t say enough about the amazing people at Mayo that have been there for us. They’ll be there for you too.

All my best and please keep us posted. I will be keeping an eye out for it.

Be well and safe,

Bryan

My husband is listed and we are at Jacksonville

Welcome to the group, Ginger. I believe you were directing your question about MELD scores and which Mayo campus to @btg, correct?

@gingercorless, are you listed at Mayo Clinic? How are you doing?

We have been on the list since October. On the 17th we get the cancer exception points and will have a MELD score of 30. Do you mind sharing what your Meld score was and which campus did you have your transplant.

That is wonderful! Congratulations and welcome to the club!

Brian, Congratulations!
Your words perfectly express the miracle of receiving an organ transplant. My eyes filled with tears of happiness as I read your account from your hotel room.
I am filled with joy are hearing of your news. I expect that your schedule is busy and I know that you will need to catch up on your rest while you recover from
surgery.
I look forward to updates!

Hello all!

I am just getting up after my first night’s sleep in our hotel since surgery! After I messaged you that I was listed two weeks ago, I received two offers. On the first I got to the hospital and was ready to go in pre-op when I was told that the donor did not progress fast enough. 1st dry run, which I expected might happen. The next day I received another that I found out the follow morning was also off. So, headed to Mayo that morning last Friday for my final labs of the week. While checking in I got another call from procurement asking me to instead go the the hospital to get admitted. It was finally a GO!

I was discharged on day four post op! My new liver has kicked in like it was where it needed to be to keep me alive and well. So far, all my numbers have have balanced or on their way to being where they need to be.

Sorry for being so long winded but, I can’t even explain how happy, incredible, fortunate and blessed I am after this life changing series of events. To be laying here in bed five days since transplant is an absolute miracle in my life. I pray for the donor and his family daily and will cherish and nourish my new liver like no other. The donor and his family have given me a new life that means more to me, my wife, my family and friends than my words can even begin to describe. I am truly blessed. This experience has changed me in ways that I could ever explain.

Again, thank you for your support and being there for me from the beginning. I’ve never met any of you but you will all be remembered. Thank you.

Bryan

@btg - Brian, this is wonderful news! You have the best reason for being long to get back.
Getting all of those tests and waiting for results is exhausting - and stressful. Maybe you can sleep well tonight!
As you have time to process all that you have been through, remember that myself and all our wonderful transplant recipient members are here to accompany you on your journey.