Decompensated cirrhosis of the liver - Living with Fatty...

Living with Fatty Liver and NASH

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Decompensated cirrhosis of the liver

Rxgurl profile image
13 Replies

My husband was recently diagnosed with decompensated cirrhosis of the liver in April of 2024 after 2 weeks in the hospital. He was discharged with some medications. Since then he was readmitted in May for a week, and in June for a week. He has ascites and everything else that comes with the disease. His MELD score was 40 when he was first admitted in April. Since then it has dropped to 35. He has heptic encephalopathy. He is very sick, jaundice and can't hardly walk. He has had paracentisis and thoracentis done 3 times now. With his high MELD score he is a candidate maybe for liver transplant, but has to be 6 months sober to get on the list. And we still don't know if he will actually be eligible for a liver transplant. My husband is very sick. I feel so overwhelmed as I work and we have No one else to help while I am at work. I am so scarred for him. He just doesn't look good. And the prognosis we have gotten is without a transplant life expectancy is 1 to 3 years. I don't think my husband will survive that long. So worried.

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Rxgurl
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13 Replies
lusitania84 profile image
lusitania84

Keep the faith. I have a family friend who was in the exact same boat and he eventually got the transplant. It's been a rough ride for him but he is finally doing much better.

Rxgurl profile image
Rxgurl in reply to lusitania84

Thank you ! 🙏

Jkf1 profile image
Jkf1

I am so very sorry. I am praying for you and your husband.

Rxgurl profile image
Rxgurl in reply to Jkf1

Thank you. 🙏

Bloomwithgrace profile image
Bloomwithgrace

hi there! First I want you to know that you are not alone and I am praying for your husband and for you. 🙏🏻❤️My son is 40 years old and we have gone down this path from Dec until now with over 140 days in the hospital. He just had the acites drained off for the first time. And I’ve heard that once that happens it has to be done from now on. He had a collapsed lung at 50% due to all the extra abdominal fluid and they had to drain that area too. I’m not sure where this places him in the transplant department. But it’s certainly scary. I keep praying for a breakthrough with his diet and health overall. Be sure and get a hepatologist. We have one at Vanderbilt who is awesome. My son is not jaundiced yet so we are grateful. But he does have stage 4 cirrhosis from alcohol overuse when he lost his father. I’m hoping to find some way to help his liver to be less congested. Hoping that will help slow the fluid overload issue down. I pray your husband will get all the help and medical attention he needs and prayers for healing and comfort. . And I pray God wiill give you comfort as his wife and caregiver. 🙏🏻🙏🏻🙏🏻❤️❤️❤️We have been told that our meld score is not where a transplant is needed yet but it’s a concern all the time.

Rxgurl profile image
Rxgurl in reply to Bloomwithgrace

I appreciate all the prayers. It's been a rough 4 months. My husband's meld score is high. They are doing the work up for transplant praying he gets one soon. ❤️‍🩹🙏 hope your son gets well soon. God bless you.

Healing24 profile image
Healing24

Hello Rxgurl,

My heart goes out to your Husband & you, leave no stone unturned seek a 2nd, 3rd opinion about the true solution for your husband , I’m out in Jersey not sure where you & husband are recieving his care now?

Rxgurl profile image
Rxgurl in reply to Healing24

We live in Florida. His liver doctor's are in Advent Health Orlando

Rcjb profile image
Rcjb in reply to Rxgurl

Maybe you should try to get him to a transplant center? I know Tampa General Hospital is one of best. Find out where most liver transplants in Orlando are performed?

Rxgurl profile image
Rxgurl in reply to Rcjb

Yes, I heard Tampa General is a good transplant hospital. His hepatologist doctors are at Advent Health Orlando. They are a very good team that has positive outcomes in liver transplant. Thank you.

nash2 profile image
nash2Partner

We are starting a support group for caretakers of people suffering from alcohol use disorder. Would you be interested in talking with the leader of that group? If so, message with how to contact you so I can connect you.

Rxgurl profile image
Rxgurl in reply to nash2

Thank you. That would be so helpful.

nash2 profile image
nash2Partner

send me your email in chat and I'll connect you with the right person

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