Cirrhosis at 35: Hi Everyone, I took my... - British Liver Trust

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Cirrhosis at 35

123AF profile image
12 Replies

Hi Everyone,

I took my husband to the emergency room on Saturday night because of his cirrhosis symptoms. He had a bloated abdomen, Jaundice, and swollen feet. He was admitted to the hospital and has been there since (now Tuesday). I can’t see him because of COVID which is making this so much worse. The Dr said his prognosis is poor without a transplant. His kidneys are declining as well. I am hoping things will turn around in the next couple of days because he is still in the withdrawal phase. He has always drank but only excessively in the last year, he is also only 35. Any support or advice would be wonderful, I am truly in the worst place I have ever been. I am afraid all day every day that he could die.

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123AF
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12 Replies
Amethyst91 profile image
Amethyst91

I’m so sorry to hear this :(

I really hope for the best. Unfortunately idk much else about his condition to help give any advise and no one here is medically trained but I can tell you I know in some ways how feel. My mom went through really bad and unexpected cirrhosis issues a few years ago and it came out of no where because she wasn’t a drinker but she had a lot of other health problems. I can tell you the first night we took her in due to HE that we didn’t know or understand at the time, all the drs told us she was in the worst shape with the worst numbers they had ever seen in some of their careers. It was terrifying and we couldn’t even talk to her due to her mental state at the time but all the drs told us she had a major chance of not pulling through. We prayed stayed by her for days ( since covid wasn’t a thing at the time) and after three days thinking we would loose her she woke up. It was insane and even then her hospital stay was extended until she was fully ok. She fought multiple very serious health conditions and complications for years and surprised drs for years before it got her and I’ll tell you it wasn’t entirely the liver that got her. From things I’ve read and seen the liver and other organs are capable of amazing things and even when drs think someone is at their end they can still pull through. My friends uncle doesn’t have the conditions my mom had but he does have cirrhosis and he’s had it for about 5 yrs now and he’s been in some bad shape in the hospitals too and he’s pulled his way through all of them. I hope at least you can have some comfort knowing ppl can pull out of some critical situations and I’ll be praying for the best.

123AF profile image
123AF in reply toAmethyst91

Thank you so much for the reply, that’s amazing that your Mom made that progress. I am trying to keep some hope ❤️

Laura009 profile image
Laura009

Sorry to hear of your husband's diagnosis. In the UK there are strict rules around organ transplant. A patient has to be completely alcohol free for at least 6 months to even get on the list and prove that they are free of addiction to ensure they will not start drinking again after recieving these vital precious organs. So l sincerely hope your husband reaches this point so he can give himself a fighting chance. I'm also sorry to say once the kidneys start to fail, he is likely to be in intensive care, as was the case with my husband. Where he recieved the most amazing care and they never gave up hope.

I wish you both strength, good wishes and a better outcome than my husbands.

All the very best

Laura x

Lam1e profile image
Lam1e

Well done for getting your husband to hospital. He is definitely in the right place to get the help he needs!

In December 2018 I was in a similar situation, with almost identical symptoms! At first I felt as if the Hepatology team were almost my enemy and really they were telling me things I didn’t want to hear! But with support from friends I did listen and realised unless I did as they said I would certainly have a much shorter life!

It is hard and there are good days and bad days and getting to grips with all the medical terminology and medication and tests and the communication is not always good so having to ask questions and understanding what things mean!

He can certainly never drink again if he is being considered for transplant, but a good diet (ask for a specialist liver dietitian as they are amazing) and getting as well as he can will be a big help in the process! Also if there is any psychological help he can get might be good too.

I had my transplant in December 2019 and am now fit and well and grateful every day for my gift.

It is not easy, and it must be even harder during Covid, but take it one day at a time, learn everything you can, ask questions, be persistent but polite🙏

You need to make time for yourself too!

Lesley

Spooks58 profile image
Spooks58

I'm so sorry to read this, it's very similar to what happened to me in June. My husband (aged 62) was in hospital for a week with jaundice, ascites, mild HE and oedema in both legs. He was diagnosed with cirrhosis and has since had a gastroscopy which revealed that he also has varices. When he was in hospital I couldn't visit him because of Covid so he was on his own when he got the diagnosis. However, he has lost three stone and is looking much better now and he promises he'll never drink again. We don't know what the prognosis is but hope for the best. I'm sorry your husband's kidneys have been affected but modern medicine is incredible. Try to talk to his doctors and ring the British Liver Trust helpline, they really helped me. Take care.

We are so sorry to read how unwell your husband is.

Are you in the UK? If so, you may like to call our nurse led helpline on 0800 652 7330 10am to 3pm for a chat.

Do also look at our website for suportive information.

Take care and keep us posted.

123AF profile image
123AF in reply to

Thank you for your support. I am not in the UK but I will take a look at the site. Thanks again,

123AF

FlyingArrow profile image
FlyingArrow

I cannot add much to what others have written but I can send your husband good luck wishes for his road ahead and hope all goes well.

You take of yourself too!

Love

FlyingArrow x

123AF profile image
123AF

UPDATE!

After lots and lots of digging we have found a Transplant center that may take him!! We are not out of the woods yet but are flying out of state to get him to this center within the next couple of days. If things go well he will be fully accepted on to the list and taken into the transplant centers care until then.

Through my digging (with the help of family) we also found two hospitals in the US that perform Liver Dialysis to help bridge time to transplant. We are not doing this but I wanted to let you guys know it exists. A lot of the Drs I spoke to had not heard of it.

Wish us luck ❤️❤️❤️

123AF

Ellewoods1 profile image
Ellewoods1 in reply to123AF

Where is the transplant center you found and the dialysis center you referenced. Best of luck to you all. Prayers and love,

Karen

123AF profile image
123AF in reply toEllewoods1

Maryland University was great and Ohio would do 3 months. Jefferson in PA and Utah University both said they would do the dialysis

Ellewoods1 profile image
Ellewoods1 in reply to123AF

Wonderful to know but pray I never need them. Thanks.

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