Cirrhosis of the liver

[janerayne]

Hi ..just wanted to introduce myself ..I'm 46 and had a liver transplant in 1989..I now have cirrhosis of the liver (non alcoholic ) and face a 2nd transplant in near future ..just want to chat to people who are experiencing similar problems ..ty for reading

[AyrshireK]

Welcome aboard Jane, hopefully you'll find the forum a welcoming and helpful place to get support and share experiences.

Sorry to hear you are going to have to go through the whole transplant experience all over again, I hope your 26 or so years with liver number 2 have been ok up to now.

I note your condition is non-alcohol related which is similar to a great many posters on here. Is your cirrhosis now of the same cause which led to your first transplant?

Wishing you all the best, Katie xx

[janerayne in reply to AyrshireK]

They did not know what caused my liver to fail first time but apparently it's the same this time ,they can't pinpoint what it is , numerous tests have been done ,I'm clearly an odd ball lol, I'm a fighter so remaining positive, good days and bad , how about you 😊

[AyrshireK in reply to janerayne]

It's my hubby who has the liver condition, at 51 he all of a sudden vomited loads of blood, for a while before that he'd felt a bit groggy but it had been put down to stress/depression because of different things he was going through.

Anyway he got admitted to local A&E and after a time in intensive care etc. we got told he had advanced cirrhosis of the liver which came as a massive shock - he is tea-total and was very, very fit and active.

First biopsy was a rubbish sample so was inconclusive as to cause but due to presence of a couple of 'rogue antibodies' they reckon it has been caused by Auto-Immune Hepatitis.

A year after diagnosis we were sent to touch base with the transplant unit in Edinburgh who have taken over his care - they reckon his AIH attacked at some point in the past, done it's damage and then burn't out so he too is a bit of an oddball because that is an unusual presentation for AIH.

He was assessed and listed for transplant in 2014 but taken off 10 months later because his blood results have improved a little taking him outwith the qualifying criteria at present.

We are just trying to make the most of every good day in the knowledge that if/when he is relisted it will be the real deal.

Love and best wishes to you,

Katie xx

[MisterX]

Hi Jane,

Feel terribly for you that's really awful news.

It's a pretty good place to chat - and lots of people in the same boat as you although fewer who've braved it before.

Do you have an indication of what stage of cirrhosis you now have and the cause?

Very best wishes.

[janerayne in reply to MisterX]

It's progressing quite quickly but I'm in good hands so fingers crossed ..beat it once so I will continue to be positive , feel more scared this time as last time I was on brink of coma and didn't know anything about it till I woke up , this time spleen very enlarged..varices present and they have just found out I have pressure on the left side of my heart, I'm so tired all the time and have anaemia but I will carry on living my life ..There are many people worse off, may I ask have you had a transplant 😊

[carmik]

Hi Ayrshirek

Morning I note your comment as to the fact that "Alcoholic Liver Disease ) is the only one that can be eradicated by Transplant.

I think you will find that there are others that can be cured by transplant.

Mike 's cirrhosis and HCC was due to Alpha 1 Anti-trypsin Deficiency and providing the new liver doesn't carry this faulty gene then the deficiency no longer exists in his body. H e will still test positive for the faulty gene but the new liver overrides this.

Therefore transplant removes the chances of getting cirrhosis again (except under any other circumstances of course). It also prevents him from either developing Lung Disease or stops it from deteriorating if the patient already has some degree of lung problems.

[acjb007]

An I ask a question? After a new liver is transplanted will cirrhosis still come back or does a new liver work normally as long as you don't drink?

[AyrshireK in reply to acjb007]

Those who have cirrhosis due to alcohol are tested regularly whilst on the list to make sure they are not still drinking, a person will not be listed if they are still actively drinking. Post transplant they have to sign up to a pledge that they will never drink again.

Providing no alcohol is taken then the transplanted liver should work as normal and cirrhosis due to alcohol will not come back. However, that's not to say the patient could never fall ill again and sustain damage via another cause but that would be unlikely - obviously there are no guarantees that transplant will be 100% successful as we've seen on the forum recently.

As the original poster on this thread Jane has said her cirrhosis in new liver is nothing to do with alcohol.

Katie

[Bermuda1]

You also missed out on those now where they have taken as successful treatment as possible for Hep C. They will no longer get a damaged liver from that virus, unless they get reinfected , or those who have taken a drug overdose or have to have a transplant due to medically provided drugs.

[janerayne in reply to Bermuda1]

It certainly changes your outlook on life , I have only been on here a short while but speaking to some amazing people .😊

[Bermuda1 in reply to janerayne]

It does change your out look on life and I know many people who hàve gained a lot from having to go through this trauma. It makes you analyse your life and distinguish relationships and friendships, an your own way of being. It also had made many much more empathetic and appreciative of the the small miracles in life and the people we have taken do granted . So it is not all negative , or all doom and gloom.

[AyrshireK]

I've edited my original post because it was obviously a bit too broad sweeping. In a lot of cases transplant will not remove the original cause of cirrhosis and it can come back - where the cause of the damage is not totally removed i.e. some of the Hep B, C viruses if still in the blood stream, many of the auto-immune conditions because although they can be held in check they can't be removed. Alcohol, drugs and those mentioned above can obviously be removed as a causal factor and thus shouldn't have any impact on a transplanted liver.

[Abby14]

Hi Jane, I have just been told I have chrrioss & am having tests to find out how bad it is!

[lighthouse123]

I hv been diagnosed with cirrhosis the last 6 years, firstly decompensated then it changed to compensated over the years. Any time I asked how bad the cirrhosis was, I'm always fobbed off saying, oh it's irreversible (I know that). There is a private clinic in ireland here that gives fibroscan (doesn't seem to be available on public lists). Would it be worth my while paying for same? I would love to know if cirrhosis is minimal or still a risk factor. I just keep being told that bloods good. Ultrasound fine (apart from last time,two small benign growths) and then return in six months. So would a fibroscan reveal more information than I'm getting?

Many thanks, L.

[deanw41 in reply to lighthouse123]

Yes, absolutely it would give you a an idea of where your liver is at. My diagnosis was cirrhosis 3 years ago, I pushed for a Fibroscan last year and it was 8.8kpa F2 Fibrosis which can regress.