Liver transplant - Let's support each other

That is wonderful! Congratulations and welcome to the club!

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.

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?

My husband is listed and we are at Jacksonville

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

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

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?

@gingercorless, Please accept a virtual hug from me. I transplanted in 2009 and even though that was long before Covid19, I can understand your feelings. Has your husband been temporarily inactivated from the transplant list? That happened for me for a different reason- and it was a real disappointment that I remember very clearly. How long until you husband will be eligible to be retested and reactivated?
I hope he will remain symptom free (and you, too).

What have the doctors told you about what to expect after he gets a negative test?

Long Haul COVID symptoms.

Hi all, I've tested positive for covid 3 times and it's been 6 months since and I'm still having a lot of issues, health and a little mental? I'm wondering if it's this long haul everyone is talking about and what can I do to get help? I had a liver transplant in 2010, and finally got all 3 covid shots, but have been sick before and through them. I'm having so many weird issues I'm not sure what to do about them. Does anyone else have problems with this?