1. < Transplants

Liver transplant - Let's support each other

Posted by lmctif @lmctif, Oct 29, 2018

What topics do people who are waiting for a liver transplant want to talk about? Who has had a liver transplant and wants to talk about?

Interested in more discussions like this? Go to the Transplants Support Group.

gingercorless | @gingercorless | May 23, 2022
In reply to @btg "Hang in there there @gingercorless! So sorry to hear about the COVID test but it is..." + (show)
@btg

Hang in there there @gingercorless! So sorry to hear about the COVID test but it is fantastic news to hear that things are finally moving forward for you both. Prayers full steam ahead for your husband to be blessed with the gift I know he needs. We’re all here for you, you’re almost there.

Bryan

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Thank you for the words of encouragement

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Moderator
Colleen Young, Connect Director | @colleenyoung | May 23, 2022
In reply to @gerryp "Hi Ginger & welcome to Mayo Jacksonville. Your husband could not be at a better hospital...." + (show)
@gerryp

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

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Welcome @gerryp. I love your mission to give back and help support fellow liver transplant recipients.

@gingercorless, here's more information about the monthly Zoom support group for people at Mayo Florida. The next meeting is tomorrow, May 24 at 11 am ET if you're able to join.
- Liver, Kidney, Pancreas Transplant: Second Chance Support Group, Mayo Florida https://connect.mayoclinic.org/event/liver-kidney-pancreas-transplant-second-chance-support-group-156/

Gerry, your transplant is still rather new (Feb 2022). May I ask what condition led to your needing a new liver? What activity are you most excited about being able to do again?

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2 replies
btg | @btg | May 23, 2022
In reply to @gingercorless "We were placed on inactive list for 10 days. We will be reactivated on May 31st...." + (show)
@gingercorless

We were placed on inactive list for 10 days. We will be reactivated on May 31st. Since he has no symptoms they will not require a Covid test. Yes it is disheartening but we think we will get a call again in June.

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Hang in there there @gingercorless! So sorry to hear about the COVID test but it is fantastic news to hear that things are finally moving forward for you both. Prayers full steam ahead for your husband to be blessed with the gift I know he needs. We’re all here for you, you’re almost there.

Bryan

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1 reply
gingercorless | @gingercorless | May 22, 2022
In reply to @rosemarya "@gingercorless, My fingers are crossed for a June call! However, as you already know, there is..." + (show)
@rosemarya

@gingercorless, My fingers are crossed for a June call! However, as you already know, there is no way to predict.
How is husband feeling, pre transplant wise? Any yucky liver failure symptoms? Is he able to eat well and to get any physical activity during this lull?

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He is feeling pretty well. His varices are causing issues. He has to have more banding done. His energy level is dropping and he shows some jaundice.

Thank you for your words of encouragement.
Ginger

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | May 22, 2022
In reply to @gingercorless "We were placed on inactive list for 10 days. We will be reactivated on May 31st...." + (show)
@gingercorless

We were placed on inactive list for 10 days. We will be reactivated on May 31st. Since he has no symptoms they will not require a Covid test. Yes it is disheartening but we think we will get a call again in June.

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@gingercorless, My fingers are crossed for a June call! However, as you already know, there is no way to predict.
How is husband feeling, pre transplant wise? Any yucky liver failure symptoms? Is he able to eat well and to get any physical activity during this lull?

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | May 22, 2022
In reply to @amykyall "Hi all, I've tested positive for covid 3 times and it's been 6 months since and..." + (show)
@amykyall

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?

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@amykyall, Welcome to Connect. I see that you had your transplant one year after I had mine. I am sad to read about your difficulties with 3 positive covid19 tests. Did you have symptoms? We’re you able to get of the monoclonal antibodies treatments?
Have you asked your transplant doctors about the current bothersome symptoms and if they are due to post covid19? Or if they are caused by anything else?

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1 reply
gingercorless | @gingercorless | May 22, 2022
In reply to @rosemarya "@gingercorless, Please accept a virtual hug from me. I transplanted in 2009 and even though that..." + (show)
@rosemarya

@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?

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We were placed on inactive list for 10 days. We will be reactivated on May 31st. Since he has no symptoms they will not require a Covid test. Yes it is disheartening but we think we will get a call again in June.

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3 replies
amykyall | @amykyall | May 22, 2022
In reply to @amykyall "Long Haul COVID symptoms." + (show)
@amykyall

Long Haul COVID symptoms.

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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?

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2 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | May 22, 2022
In reply to @gingercorless "On Tuesday 5/17/22 my husband got his cancer exception points bringing his MELD score to 26...." + (show)
@gingercorless

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?

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@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?

REPLY
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