Anyone here remained compensated (Child-Pugh 'A' and asymtomatic) for more than 10yrs after being diagnosed with cirrhosis.

Anyone here remained compensated (Child-Pugh 'A' and asymtomatic) for more than 10yrs after being diagnosed with cirrhosis.

[Roy1955]

I am Child Pugh A and meld 6

Diagnosed 2 years ago after a routine medical.

NEVER had symptoms. (but imagined quite a few because of worry and heightened awareness).

2 consultants have said that if I follow "the rules" I will probably remain that score for the rest of my life and have normal life expectancy.

I might progress into liver problems but also I might get run over by a bus!

Right now I am fine so onwards and upwards.

[kitkatkaz in reply to Roy1955]

Hi Roy I think it's nearly 10 years now though other complications do happen along the way certainly not plain sailing and symptoms as long as my arm and very tired but I am trying to live life as long as i can. My problems are fighting the system and lack of understanding from so called friends as unless you have jaundice or something else peoplw can see liver disease is invisible. I also have Nash child Pugh a best wishes live life long and as full as u can k

[Hidden in reply to kitkatkaz]

Kit, how long was you componsated before you became decomponsated and started having problems

[kitkatkaz in reply to Hidden]

I am still compensated, but not without complications from time to time. I found out i had it in 2010, but had symptoms and irregular blood results for many years before that but my GP at the time didnt pick it up or take it further at the time (hindsight is a great thing, but GPs tend to know more about the liver these days). And when you are tired, rest, and your body will thank you for it. I wish you well also, but live life to the full, as much as you can, I have a must-do list, not doing too well because of money and energy. I set myself at least one duty a day, and so far I'm keeping to it, though the house is a mess and no energy to clean anymore. I better stop there, i could go on and on... K

[Hidden in reply to Roy1955]

Thanks for you reply and I wish you well.

PS. Watch out for those buses 😏

[Bootandall]

I am Child Pugh A and MELD 7. Hasn't been 10 years yet, diagnosed October 2016. I was told I had "high liver enzymes" on a pre-employment physical in 1987, was asked about my drinking (only winter holidays), but still got the job. I didn't have any other symptoms for years. RUQ pain and nosebleeds when I did drink later in life, resolved when I quit. Have always been anxious and had stomach pains. Turns out I had Hep C, which I was treated for in 2017.

Have been diagnosed with grade 0 varices and portal hypertension, portal hypertensive gastropathy, fatty liver and HE since diagnosis. I don't have symptoms if I take my medications.

I had been on a beta blocker and diuretic, for high blood pressure and swelling of lower extremities. I put on 100 pounds in a few years (2000s), my heart started pounding and I had panic attacks. Currently working on weight loss, previously told l could eliminate these meds if I lost the weight, don't know if that's still true, probably not.

So, in hindsight, it was thirty years from the time I first had any indication that something might be wrong (which itself was about ten years after a blood transfusion) before I had symptoms that were definitely due to cirrhosis. HTH

[Liver3 in reply to Bootandall]

Hi bootandall, your story reads very much like mine! I too had blood transfusions around 30 yrs was a social drinker never heavy, cured the hep c few years ago Epculsa now living with cirrhosis, scary stuff. I recently had my ultra scan scared me I looked over saw my liver now I have night mares seeing it! I had lost weight about 27 pounds but have gained about 7 lbs back trying to lose 20 lbs not easy as I don't seem to have the energy or motivation I did when I lost the weight originally. Only been 6 or 7 months I quit going to gym due to depression along with finances set backs. Waiting to do upper gi for varices. I feel things have gotten worst dont recall my meld score but think it was a 7! I just wanted to ket you know I'm here going through similar issues

[Bootandall in reply to Liver3]

Thank you, it is very kind of you to let me know that ! 😘❤️

As kkk said, it is an invisible disability, which can feel very lonely.

I keep hearing about monthly gym specials, but I haven't gotten motivated to do anything about it yet.

Feeling very tired and low some days, money has always been a problem.

Feel free to pm me if you want to. 😉

[Hidden]

Heya c1jam. Sort of missed here if you are 10 years in yourself or not? Wasnt sure if you were asking if anyone else is as well or?

[Hidden in reply to Hidden]

I'm 3yrs on from being diagnosed with cirrhosis (fibroscan 27).

[AyrshireK]

Hubby is 7 years post diagnosis (auto immune cirrhosis). Diagnosed after a massive upper GI bleed - 7 burst varices, jaundiced, deranged LFT's, portal hypertensive gastropathy and later portal hypertension related splenic artery aneurysms.

Listed for t/p 2014 but delisted after 10 months.

Now stable, compensated, no varices, never any ascites, normal LFT's.

Sleep disruption, fatigue, some concentration and comprehension difficulties, minor symptoms in the grand scheme of things though very debilitating (unable to work), falls asleep travelling and can't travel alone.

Makes the most of good days.

Katie

[Bootandall in reply to AyrshireK]

Katie,

I was very happy to hear 😊 that the banding worked for your husband's varices. How were the aneurysms treated? Sorry if I missed you telling about it, that sounds traumatic. Glad he is compensated again. Gives us all hope for those times when things might go sideways!🙄

[AyrshireK in reply to Bootandall]

His aneurysms were treated with a embolization procedure - they went in through the femoral artery in his groin up to his spleen and filled all the bulges up with surgical packing (of some description). The result was it actually cut off the blood supply to his spleen causing a very painful splenic infarction - he is now classed as having a non-viable spleen and has to take penicillin (Phenoxymethyl Penicillin) for the rest of his life. His once enlarged spleen though shrank away and as a result it reduced portal hypertension, his previous increased INR (blood clotting time) normalised and platelet count went from 20 to 200+. No banding of varices needed since the embolisation.

I have since read that in some countries they actually do this procedure or similar to reduce portal hypertension though it isn't pain free - it took a good few months before the spleen pain and referred left shoulder pain wore off. It also undid some of his weight gain work in that the pain was so bad he lost his appetite.

Thankfully as I say doing not too bad at the moment, making the most of good days.

Katie

[Bootandall in reply to AyrshireK]

Oh my, that sounds rough, thankful to hear he responded so well. Making the most of good days is all any of us can do ☺️ take care luv

[Brett11]

I got diagnosed in October 2016. I had every symptom. HE, bleeding varicies, oedema, portal hypertension, jaundice, probably more but I can’t remember 😂

I was PUGH C with MELD in the high teens. Grade 3 varicies.

Now I’m compensated, PUGH A, MELD 8 and grade one varicies.

OH!! Huge umbilical hernia 😂 😂 how could I forget bad, bad Bertha?

Cheers,

Brett

[Hidden in reply to Brett11]

None of us can forget Bertha Bob....😁👍