Any young people on here?

Just wondering if there’s any young people on here with liver cirrhosis & have had liver failure and ascites, I was taken into hospital 4 months ago with jaundice, liver failure kidney failure and ascites witch was causing a fluid build up in my lungs and stomach (my stomach was unbelievably big) and very enlarged veins in my stomach, I knew I drank a ridiculous amount of alcohol but always thought I’m young ect everyone does it, anyway just wondering if there’s anyone in the same boat as me? I’m 27

[Hidden]

Hi Lar

I'm very sorry this is happening to you at such a young age. Liver disease is tough to take at my age but I would have fallen apart in my 20's and I do not think I could have been as composed to have written a post as calmly as yours appears to have been.

I've only been here a short while but there are people on here who are young or were affected by liver disease at an early age. Unfortunately, some people already start out with a genetic inherited liver disease. Only a few days ago someone in his 20's born with Gilbert's syndrome posted he had started drinking and it quickly escalated to a serious point.

Everyone here is in the same boat as us.... either with liver disease or they have put their lives on hold to care for someone with liver disease. We are a support group who share our problems and tips, experience and successes.

SUCCESSES being the important word here, because people can get better if they decide that they will change their lifestyle.

If you have any questions just ask away, someone will always answer.

Just wanted to say Hi and welcome you aboard.

Dave

[Hidden in reply to Hidden]

Thank you Dave

[ciroze_05]

Hi there buddy, Im 34 yrs old, diagnosed with liver cihhrosis last August due to heavy drinking..I have ascites too before but it was drained once.. I have HE too, i lost a lot of weight and muscle mass.. Im also very weak and cannot eat well..Im 4 months sober now.. I have never touch any alcohol since then..

Right now i can say that im feeling better now than before.

Dont lose hope, just do what you doctors told you and dont drink again

[Hidden in reply to ciroze_05]

That sounds similar! It’s such a shock isn’t it I just thought you had to drink heavily for 20/30 years for anything like this to happen, I’m also very thin & weak still, slowly putting on weight but still only 8 stone had my ascites drained a few times and it hasn’t come back so hopefully doesn’t, congrats on 4 months sober! I’m also 4 months, it’s good to know there’s other people who are similar

[ciroze_05 in reply to Hidden]

Just dont put too much salt on your food so your ascites wont come back.. So how are you now?

[Zukosmile07 in reply to ciroze_05]

Alright ciroze find out what percentage of scarring you have please. Or ask your doctor to do scans to find out.Do you know what stage you are?

[ciroze_05 in reply to Zukosmile07]

I have decompensated liver cihhrosis.. I have my abdominal ultrasound before, all my organs are in normal except my liver.. I have blood test every month and so far they seem to be close to normal.. So how are you my man? i hope your doing great😊

[Zukosmile07 in reply to ciroze_05]

I'm only going home today for the first time in the rest of my life without cirrhosis following me around like a little yapping dog. I feel fantastic and I hope you get chance for some of this relief. Maybe you can eventually switch yours from decompensated to compensated without complications. That is massive advantage as well pal. How are you doing?

[Roots57]

Love and best wishes to you Lar. I’m not young anymore but your youth will give you strength to fight this dreadful disease. Being young will motivate you as you have so many years ahead of you. Regret is a wasted emotion. Turn your regret into determination. Xxx

[Hidden in reply to Roots57]

Thank you

[Zukosmile07]

Lar 27 fantastic age and if your ascites fluid has stopped occuring that alone is a massive relief. You sound as though you do have compensated cirrhosis which nowadays is manageable against the condition. Healthy everything from now on and a relatively normal life. Would like to know how much scarring you have that will indicate what level of cirrhosis you are at.Don't panic at the age of 30 I had alcholic hepatitis of the liver. Not yet diagnosed with cirrhosis which you can only find out through a series of scans. Get those scans done and get some results in for bad or worse, you will feel better from just knowing and take your condition from there. Get a good dietitian (some days you won't even notice that you are poorly)

Good luck with the new lifestyle and ask away any questions. These brilliant crew members will be able to answer just about anything you need.

[Hidden in reply to Zukosmile07]

It says decomp on my diagnosis letter & what scans are they? I had a fibro scan the last time I saw my consultant around 2 weeks ago that was 65.7kPa but I’m unsure what that even means? Thanks a lot

[Zukosmile07 in reply to Hidden]

If your score is that high and correct then you have an extremely stiff liver. If it is that high you really could do with a CT scan to see how much scarring to liver you have. Scarring then indicates what stage decompensated you are.My fibroscan results were 70kpa and the machine max out at 75. I was also informed that it wasn't 💯 accurate because of all the acsites fluid building up. The CT scan showed I had 90 % scarring which indicates decompensated cirrhosis of the liver stage 4. The worst one, end game I'm afraid. The only cure is a transplant.

You need to know how scared your liver is and because you are young and if you become healthy/healthier than it could be a turn around. Livers are amazing at what they do and how much they can stand. You need to start talking about getting referred to a liver team and getting some results. Just knowing exactly what is wrong will help you with recovery. Never think the worst and go and find out. Trust me..good luck Danny.

[Zukosmile07 in reply to Zukosmile07]

Hold on was it decompensated cirrhosis or just a decompensated liver. Need to know because I have just told you about mine yours could be further from cirrhosis. You need to find out buddy.

[Hidden in reply to Zukosmile07]

Thank you, I’ve got a liver team I’m waiting for date for a CT scan I’ve just been kind of doing and going to every appointment they give me without asking questions about what their for but I’m going to stop been so worried and ask in future! Thanks for replying & I hope your doing better now?

[Ruby1960]

Hi there. A close friend of my sons has recently passed away due to liver disease. She was warned 12 months before that she should stop drinking, but sadly thought she was invincible. She was 39 with 2 young children. I myself have cirrhosis due to contracting Hep C from a blood transfusion many years ago, but I have no doubt my drinking habits contributed to the problem. It appears that many of my sons friends drink far too much, but think nothing of it. It’s a horrible disease and sadly many people don’t get any warning signs. Take care

[Zukosmile07 in reply to Ruby1960]

I managed to get rid of the horrible disease and I still hate it with a passion. It doesn't just kill you, it toys with you grumbling away sniggering giving different parts of your body to be concerned about. You hear from the doctors that you are going to die if you carry on what you don't here it's long and painful, stressful, vile bathroom habits and kicks to the kidneys slow death. Now trip over. Grrrrrrrrr. Wow I think I needed that..... Maybe closure...ha! Good luck all my fellow liver sufferers and cirrhosis haters. X

[Onesmallstep1969 in reply to Zukosmile07]

Hi Zukosmaile07, how did you get rid of the disease (cirrhosis)? Really interested.

[Zukosmile07 in reply to Onesmallstep1969]

A transplant. Kind of hurts a little but you don't half feel good afterwards. Also doesn't take away the passion away for hating it but it doesn't half help.🤣💯😂😉

[Hidden]

Hi there Lar90100, and welcome to this friendly forum. If you would like to talk things over, our nurse led helpline is open Monday to Friday 10-3pm on 0800 652 7330. Our support groups aren't age specific, but you may find them useful. I'll attach the link below for you.

britishlivertrust.org.uk/in...

Take care,

Trust10

[mtk0925]

I drank heavily in my 20s and have some issues now. I’m 36 so not young not old yet. Does your care team have a plan for you? To learn more about what caused this? As it may not have been solely alcohol abuse it could be a number of contributing factors,

[Ubwa]

I was 34 when diagnosed, am 35 now so not far off you. I also thought decades of heavy drinking was needed, but appears not. I didn’t drink until 29/30. And then only heavily for the last two before stuff got real. Your admission sounds very similar to mine, although I never suffered ascites(none that was drainable anyway - didn’t stop them shoving that massive needle in!) but was discharged with decompensated cirrhosis that has compensated and stabilised. Docs did say that due to my age I had a good chance of a somewhat decent life and not needing an immediate transplant which so far is holding true - by you being younger hopefully it applies to your situation too. But it’s important to not drink - at all - and try to stay positive and do as told by your medical team, hopefully you will slowly start to get better. It ,unfortunately, takes time.

[Hidden in reply to Ubwa]

Thanks

[deanw41]

Welcome to the group!! Mine went bang at 40(2 years ago),I had ten litres of ascites drained once. No water tablets just a beta blocker. 18 months no alcohol feel fit and well,compensated with normal liver function. Everyone is different,but the human body is amazing when you treat it right. All the best

[Hidden in reply to deanw41]

Thanks, did your ascites leave stretch marks? the first drain I had they drained 13L and it’s left the worst stretch marks so just wondering if they get any better

[deanw41 in reply to Hidden]

Oh gosh more than me,I looked like a pregnant skeleton !! No I didn’t get any ,how I don’t know!?!! Get some bio oil and massage it into your stretch marks that can help. Have you had or been offered a Fibroscan? I don’t know how much scarring I have? My consultant said he might do one in the distance future....🤔🤔

[Hidden in reply to deanw41]

Hope your doing well now! Yeah had a fibro scan 2 weeks ago and just waiting for a CT

[deanw41 in reply to Hidden]

Yeah really well thanks

[Zukosmile07 in reply to Hidden]

13.7 litres of fluid out of me was the highest and I walked out 3 stone lighter. I have stretch marks but that was with 16 births of ascites fluid from January. No they don't go but I have noticed now because it doesn't build back up that my 6 pack is still there working its way through. Exercise and see what happens.

[Jebediah454]

Hi lar. I'm the same age as you, not yet diagnosed but hoping to get an ultrasound scan soon due to pain in my liver area, shoulder blade and abdomen

Can you share a little more about your historu with drink? How much units would you drink roughly

I was about 100 per week when it was bad, but more 40 per week in the last year or so maybe add an extra ten on some occasions

[Hidden]

Yeah sure, so I’ve always had really bad addiction problems since about 14 when I first started smoking weed then drinking on weekends 18 years old every night I was drinking and smoking but only around 4 cans of low percent cider and kept that going for years and doing other drugs witch got quite bad then 3 years ago I stopped doing drugs all together and completely replaced it with alcohol & usted to work running a couple of bars so drinking was a 24/7 kind of thing for me, past two years it was sort of a bottle of 1l vodka every few days then my dad passed away really suddenly and unexpectedly in April and after that it was 1l bottle of vodka everyday sometimes more until taken into hospital

[Jebediah454 in reply to Hidden]

That's a lot lar! It is awful how much of a grip alcohol can have on some of us, especially when it is to replace one bad habit, you often double down on the alcohol because well it's legal and easily accessible.

I am assuming you are now sober? Are you going to be assessed for a transplant or are your symptoms improving? There was one guy on here who drank 6 bottles of wine a day for a few months and ended up in a similar situation, he took up the gym and went tee total and made a good recovery so their is hope

[Linzenilss38]

This scares me as I have drank half a 750 ml of fireball a day for a year and a half. Do they thingk the drugs may have contributed?

[Hidden in reply to Linzenilss38]

Hi Linz

If you have not stopped already... please stop drinking now.

you should get a fibroscan, but, regardless of the result, listen to your body, if you have pain, it is for a reason, it could be your liver asking you to be kind towards it, exercise, better diet and no alcohol.

Get the fibroscan, I think it will ease your anxiety. Liver disease can be managed but not if we drink.

Take care

Dave

[Ubwa in reply to Hidden]

Seconded Dave's reply - please stop if you haven't. nothing will start to get better unless you stop completely. Even healthy drinking (oxymoron?) kills your liver cells as part of metabolism, so if damaged it, has no hope.

[Hidden]

They don’t think the contributed, they just certainly didn’t help because I felt like I was chasing such a high with alcohol. If your worried I would definitely tell your doctor sometimes it takes a lot but it’s worth it, unfortunately I left it so long and was in complete denial that I ended up getting rushed to hospital as soon as a doctor came to see me at home because a family member called him, there is free help if you find it hard & free rehab programs

[Laurap18]

I am 30 years old now but I was 26 when I ended up in hospital with kidneys and liver failure. I drank and I used drugs a lot, but I was just doing it on weekends so I thought it was fine. But there's no time for regrets, just listen to your doctors advice and be positive 🙂

[Hidden in reply to Laurap18]

How are you doing now? Do you have cirrhosis? & thanks for replying

[Ubwa]

My daily usage was similar to yours too, 0.75 -1.5l a day of vodka, or more, but I could go a day or two without (as weird as that sounds) and did manage to stop over the course of a weekend - wasn't pleasant and was since told not a good idea to do so but oh well.I got hepatitis badly too and my liver nearly tripled in size, as did my spleen which caused me pretty bad stretch marks and which caused the pointy things to try drain.

Try to not despair - it's possible to turn around to a somewhat better outcome. Mind is half the battle. And please don't be lulled into a false sense of invincibility if things radically do change, I started to repair and got decent lft's within 3 months and by the 5th was already back to "once can't hurt" - it does and does more so. It's very easy to say "I'll never drink again look at what it has done to me" when critically ill, but it really screws with your head so try think of ways to deal with those moments. Before my second admission I already decided I needed to get my head sorted and packed myself off to rehab, unfortunately was a week too late again - like the time before it seemed. But i went straight back after I was discharged and so far it seems to have paid off.

One thing I can say helped massively is getting enough protein in and eating a healthy diet. If I couldn't eat or wasn't hungry, I supplemented and near enough forced myself to get enough calories of the percentage from each macro the nutritionist said I needed. If you get onto a liver specialist they can ask your GP to prescribe no nonsense supplements to carry you until appetite comes back, as a 500ml whey protein shake can be a bit much to chug daily at the best of times but you can get them in one sip sizes. While it is limited to how much it can repair, your liver will try repair what it can and it needs resources to do that, and that energy now comes with overheads you didn't have before.

[Hidden in reply to Ubwa]

Thanks Ubwa, a lot of food for thought there, I’m so determined to never drink again I can’t even face going back to my old place yet to even get my belongings too many bad memories of been unwell and drunk! I left hospital checked into a hotel and got a new place and kind of started again with everything, I’m on 4xfortisip protein drinks a day on my prescription for in between meals & there’s a rehab that I can call and go to sort of straight away if I struggle, thank u for your advice & info

[Zukosmile07 in reply to Ubwa]

Here, here Ubwa.

[123AF]

My husband was 35 when he had liver failure and a meld of 40. We are one year post op!

[Zukosmile07 in reply to 123AF]

Do you mind... How is he now?

[123AF in reply to Zukosmile07]

He is doing amazing. He just had his annual check up and lots of good news. He is obviously not drinking and is in a much better place than before. He has some nerve damage so his feet can hurt at times, it seems to be getting better.

[Zukosmile07 in reply to 123AF]

What fantastic news... I'm smiling X .I have the same nerve damage. My transplant was a week and a half ago. I feel great.

[123AF in reply to Zukosmile07]

Congratulations! It really just keeps getting better. So happy for you 💕