British Liver Trust
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Hello from a nervous newcomer x

HI there I thought I would say hi x. I am 44 years old and have recently been diagnosed with alcoholic related chirossis (November last year) 😢😢. It sounds such a cliche but I am a normal person who has a gorgeous supportive husband, 2 adorable children who are my life and a great job x. Sadly life circulmstance led me to drinking and it spiraled out of control over the past 3 years. Drink had me and took me down leading to me being admitted to hospital for 5 weeks. I do not remember any of the time in hospital apart from last 2 weeks (this was in June last year). I nearly died and lost everything. Thankfully I have stopped drinking and never looked back. I appear healthy and have not felt so well in a long time but I am so so scared x I worry about the future and how long I will live for and if it will relapse and I get really poorly. I am under 6 monthly review and on no medication any more though was for 6 months. That is me in a nutshell xx 😃 xx

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Feeling well and not requiring any medication is half the battle won already.

Most X-Drinkers do remarkably well provided they can keep clean.

Chronic Portal hypertension (enlarged spleen) and low platelets are your best indicator of future prognosis. If platelets are returning to normal and spleen isn't chronically enlarged, this is good news. It may take a year for optimal recovery.

Keep the faith all will come right in the end. If you're truly done with alcohol, it probably will!

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Hi, I have very similar experience to you with the slight exception that I was diagnosed with non alcoholic related cirrhosis.

That in itself I found mystifying as I am a recovering alcoholic but hadn’t had a drink for circa 11/12 years prior to diagnosis.

As it was explained to me was that I started with a fatty liver, this subsequently became fibrotic and finally cirrhosis, which is the perfect breeding ground for cancer, which was where I was when diagnosed.

I had a resection (part of my liver cut away) and was left in no doubt that the cancer would return and it was my job to lose weight (began this journey at 155kgs) and that a transplant would be my “cure”.

12 months after the cancer returned, I had lost enough weight to qualify for the transplant list and the proceeded to wait on the list for a further 18 months.

Eventually the call came and I was wheeled off for my life changing transplant. Life changing it most certainly was, as it was aborted due to a major haemorrhage and a subsequent transfusion of 25 pints of blood. The overall outlook was bleak and my family were prepared by the staff to say farewell. I was in a coma for 12 days before regaining consciousness, and was discharged about 14 days later.

Some 14 months later I am still here, looking better than I ever have. A transplant is no longer an option for me, and my life will eventually end as and when my liver decides not to play ball.

I am on 2 water tablets and medication for encalopathy which is liver related but very manageable.

I have what have become pretty regular embolisations, about 4 times a year which manage any new tumour growth.

I write a blog about my cancer journey which allows me to express my thoughts (good and bad) but generally I am just blessed to share another day with my wife, kids and grandkids so really don’t have a lot to moan about.

Ensure you go to your appointments armed with a notepad and make a record of what is being said, and write down any questions you may have and anything you don’t understand.

This forum is a great place to touch base with people who can share similar experiences. Avoid wherever possible Dr Google, nothing good will come of it.

My blog can be found at 1liver1life.wordpress.com

Understand that this is a journey, you can either skip along or sit there with a face like a bulldog sucking a wasp. I chose to skip along and it really hasn’t served me too badly.

I wish you all the best, and please just ask about anything you don’t understand, someone will be able to assist.

Ray

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Wow just wow what can I say x what a story and a journey for you x you must have been so so scared bless you. To have come through that and still sounding so positive is amazing x.. skipping along is a way I want to be x sadly we can't change what has happened but sticking with feeling positive and how lucky we are. Aftwr hearing from you and others on here has been a great help. I spent hours googling rubbish and worrying myself to death x .. my fibro scan result was not the best bit my consultant tells me I am very lucky to feel so well. I compare my damage to others and it's strange how I am as well as I am which is strange but glad. I don't know what the future holds but I can't do anymore than I am hey x sending big hugs and will have a look at your big x Sarah

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Thanks Sarah,

The biggest discovery is that we are not on our own. As much as my family want to help and support, they really can’t live in my head with my thoughts and feelings. People who are going through similar experiences just seem to “get it” on a whole different level. Stay positive as much as you can,

Ray xx

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You know what Ray you are right x I have been suffering in my won head trying to work it all out until instilled across this forum! It's so reassuring to know that we are not alone on this. I try to stay positive but even with the best will people don't get the illness. Chirossis is deemed as a death penalty some times bit it's more complex mentally as well as physically hey x

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I very much like the "you can either skip along or sit there with a face like a bulldog sucking a wasp" phrase.

Best wishes to you, Mary

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Great advice Ray will use the bulldog wasp analogy imyself xx

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Hi. Sounds like you hit rock bottom with alcohol and you made it back up so well done for that. Easy for me to say but you really must stop worrying about what might happen. Apart from not drinking again there’s really not much else you can do. As long as you keep getting checked and lead a healthy lifestyle there is no point in worrying. Apart from your husband are you getting support from any organisations like the AA? Or maybe counselling for your worrying?

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Easy to say but I wouldn't worry too much right now. It would be different if you hadn't given up alcohol but you have. I'd say your chances are looking good-obviously we're not doctors but any damage that has been done may stabilize and possibly reduce-you have a good support network and something to live for so concentrate on that. Best wishes

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Thats so nice thank you. It has taken me a long time to get back to where I am now and I know from reading sole of the people's stories on here I have done well really. There is such a taboo aeoujdbtge disease and people always assume the worse. It is so nice to speak to real people who understand how we all feel and that in itself is a massive positive x

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It is scary, the worry, the unknown but you are doing everything right to keep you and your liver healthy!! Keep up the fantastic work!! Worry Bothers me so, it is hard not to but from the support I have gotten here does help decrease the worry.

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It is x I think it's the unknown mainly. Thinking what if this etc and how long do you live for !... when will you get poorly !.. Since coming on here and sharing how I feel with others the same is amazing x it's scary but knowing others are going through the same helps immensely x

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Please check you Oxygen Saturations. There is something called HPS. I have been diagnosed and far as I can see 40% of people with Cirrhosis have HPS. Ask for it to be measured or buy a finger oxometer for GBP 20 +/-. Shout if it is below 94% and I can probably offer some experience if not advise. Otherwise, keep well and look after them little ones :)

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John

Please expand HPS for us.

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Hi

Please give yourself a BIG pat on the back as you are well on the way of giving yourself every chance of leading a reasonably healthy life,cirrhosis is a horrible result of many conditions including alcohol mine is hepatitis but the consultants will monitor you with bloods/scans and treat you accordingly which hopefully could be nothing, you can live very well with cirrhosis so like others have said stay possitive and enjoy each day with your now clear head and make your family even more proud of you and try not to worry.

Look forward to following your updates.

Your not alone

Huw

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All is not lost. I was in ICU three years ago, and given six months to live if a liver match wasn't available. One year later they decided that I don't need a transplant, and three years later (now) the sonographer was looking to find cirrhosis, and there's no sign that I ever had it. The liver can - and will - regenerate itself if given a break.

I nearly died too, and everybody expected me to. But here I still am. I still take the water tablets, but only because I've always been prone to water retention during the monthlies - and I'm hitting menopause now, so nobody is going to take those meds from me!

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Wow thats amazing... i didnt knew it was possible...

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Wow no way !!.. I bet that's been a rolleroaster! So they sound no sign of Chirossis at all ?.. I always thought once your liver was scarred that it always was?... I was told mine is significant going by the fibro scan but he said nothing is set as I could have another in a year or 3 years and it could have healed threefold. I am truly healthy in myself and you wouldnt know I had it otherwise even going by bloods etc x well done to you

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I'm actually beginning to question whether my liver was ever scarred at all, as I'm sure it can only regenerate damaged tissue. That's twice now that they've found a healthy organ, and a nurse in the hospital did actually tell me that my consultant is a lovely man (he is, too) but a bit of a doom-monger. I think that, if it was cirrhosis at all, it was early stages and - therefore - my body was able to heal over time.

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Wishing you the best. My husband went into liver & kidney failure a couple years ago and we almost lost him, but he is doing better now. He is still on meds for high blood pressure and HE, but his liver doctor said he is probably good for at least another 20 years, since the hubby quit drinking alcohol except for NA [he is 70]. We are still on 6 month appts, more to keep an eye out for changes and possibility of liver cancer, but our last appt went well again so we keep our fingers crossed.

Again, wishing you the best, Mary

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You are doing all the right things and if you feel good today and can hug your kids it is a win. Do not worry about the future you have made the changes you need to have a normal life.

My wife says I am better now than I have been for a long time, teetotal since serious bleed in September and cirrhosis diagnosis 2 days later. Like you I appear healthy but feel a bit tired some or most of the time.

Futures are strange, this year I have gone from unlikely to make tomorrow, to dead in 2 years if you drink to 90% chance of next 5 years and good chance of a normal life expectancy. So my advice plan for the future, short term or long term, long for things to enjoy so the good memories carry you through those darker moments we all have from time to time. Look at all the positives in your life, you do not strike me as someone who will give up or be beaten easily after all you are a mum and wife with a lot to live for.

Tim

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Well, what a lot of people don't know about the liver is that it is the one organ that you can re-new. Rich dark greens, Vitamin B12. Vitamin B 6. One of the reasons people that drink or do drugs get a liver disease is because they have stripped their immune system. with Fatty tissue, you can look after it within a year of stopping the alcohol and rebuilding the immune. When it goes from fatty tissue to chirossis, it's longer but can be done. If it continues from the chirossis, then your looking at a transplant or surgery of a partial liver. But reality is, if you are not dead. You are not meant to die. the liver is the last organ to be hit and very serious if not treated. so, beef up your immune.

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