Newly diagnosed advanced cirrhosis

[medpilot]

Told I need a transplant but don’t qualify. Not sure what to do.....I have advanced cirrhosis with all the symptoms. Pretty scared I’ll admit.

[Nyork10]

Hi, i was diagnosed with cirrhosis in October 2016 following a range of symptoms the main issue was nausea and the whites of my eyes were jaundiced - to hear the word cirrhosis was absolutely terrifying.

I was told it was at a decompensated stage which meant absolutely nothing to me at the time, it certainly does now! The first thing which i'm sure you know is you must do is do not drink any alcohol- you've said you need a transplant but you don't qualify?

May i ask what their rationale is for not adding you to the waiting list?

[medpilot in reply to Nyork10]

The reality is booze. I’ve got to stop drinking. Thank you for responding. I’m pretty scared. They are going to scope me next week for esophageal varacece. I’ve no idea.

[medpilot in reply to medpilot]

Fibroscan was 34.9 I’m sick constantly, lost about 40lbs in the last 6 months. No motivation. Frankly I feel like crap!

[AyrshireK in reply to medpilot]

Where in the world are you medpilot? Sorry to hear of your condition and that you don't currently qualify for transplant.

The UK Transplant system demands a minimum 6 month period of proven abstinence and a pledge to life long abstinence where alcohol is a factor in your liver disease before you'll be considered for transplant assessment.

There are too few organs to go around and in order to qualify you do need to prove that you will look after the new liver going forward.

Good news is we do have members on here who have been in a state of decompensated cirrhosis with all the symptoms and have managed to use it as a warning, have got dry and gone on to have successful transplants and are now living happy alcohol free lives post transplant.

Start to look after your liver and yourself and give your chance of t/p in the future.

Katie

[medpilot in reply to AyrshireK]

Thank you Katie. I’m a bit of a mess. I needed to hear that. Again, thank you.

[AyrshireK in reply to medpilot]

We have other US members, don't know what the demands of the system are there with insurances and such like but you can still make positive changes to give yourself a future.

Katie

[AyrshireK in reply to AyrshireK]

You could have a look at the British Liver Trust pages on cirrhosis, alcohol and the liver and living with liver disease pages as they will give you guidance on what to look out for and what you can do to have a positive effect going forwards.

britishlivertrust.org.uk/li...

britishlivertrust.org.uk/li...

britishlivertrust.org.uk/li...

Only you can change things to give you the chance of a future. Best wishes.

Katie

[medpilot]

I live in Elko Nevada. USA. Been grounded because of this. I am a lifeflight pilot.

[Hidden in reply to medpilot]

medpilot,

We live in Minnesota - 2 going on 3 years ago, my husband was taken to the hospital with severe jaundice, failing liver and failing kidneys - the doctors did not think he would walk out of the hospital. He did.

HIs kidneys came back, but for several days he didn't know who I was. He got somewhat better and the doctors told him he had to quit drinking - from his hospital bed he said he would quit if it would keep him alive. He has not had a drink since and his liver has improved. He does have cirrhosis. His doctor said he could have n/a beer so he has that, we are still on 6 month visits to check for liver cancer mostly, his strength has gotten better and there never was any mention of a transplant by any of his doctors and his liver doctor is the head of the transplant dept at the U of MN hospital. There are a few things they are keeping eyes on to make sure things don't change.

The biggest and no doubt the hardest thing is to completely quit drinking and not go back to it. I have seen a few people on this site who have said they were on a transplant list but improved enough to be taken off, one can hope and pray that you could be one of those people and in the future give hope to others.

Best wishes to you ,

Mary

[Nyork10]

My cirrhosis is alcohol related I drank more than I should at a time in my life, whilst I thought I was ok the reality was that my body couldn't handle it.

If you stop drinking it is amazing how the liver can regenerate itself, i have gone from admission to hospital with my liver in a decompensated state, weight loss and a portal vein thrombosis. One year on I am my normal weight, physically all the signs of cirrhosis have gone and my liver is now compensated. I was added to the transplant list after 6 months of abstinence but i got taken off after 9 months as my consultant thought my recovery was going that well.

My point is that yes, you have cirrhosis and this is something that you will have for the rest of your life, however you do have the opportunity with abstinence from alcohol, a healthy diet and regular exercise to turn it on its head and live a longer healthier life. It sounds simple saying it, in reality its hard work and tough on you and those around you but you can get there, i didn't think it was possible but it is. I wish you the very best of luck - the links that Katie has mentioned to the British Liver Trust are extremely helpful and informative as is this forum.

[Bs1524 in reply to Nyork10]

I thought that once you have cirrhosis you will always have cirrhosis as it is a chronic condition?

Sorry but some of the information is so confusing

[Hidden in reply to Bs1524]

Correct always got it. But Nyork has reversed the acute condition/s back to as normal as possible Compensated state which must be maintained by a healthier lifestyle to keep it this way.

It's likely to be similar to mine Compensated, Child Pugh A, score indicating mild, least severe liver disease, no acute symptoms. B is moderate, C is most severe score.

All calculated by points score. 👍

[Bs1524 in reply to Hidden]

Thanks, we have never been told severity, score etc just that he has cirrhosis I am guessing from grade 2 varices, ascites, he is decompensated no idea on severity. His lower limb oedema has now progressed into cellulitis . I wonder why no one has mentioned a points score?

[Hidden in reply to Bs1524]

Exactly. You have to push for the fine details, I find. They either don't have the time or assume one wouldn't understand the goobledegook? It's a bit of a farce if you don't know what condition your condition is in (or his) in your case.

I was in the same boat, you've got Cirrhosis end off, leaving you searching in all the wrong places apart from here, thank God👍

The scores are All things taken into consideration. Acities none is still 1 point. Mild 2, Moderate 3 etc.

A 5-6 points, B 7-9 & C 10-15. Obviously a lot of other factors will come into the equation. Amazing what you learn albeit the hard way.

Best wishes. Confused.UK🤔

[ThreeSmiles in reply to Bs1524]

Hey

I never got told any points score - or in fact any blood test results - until about two weeks before I got on The TP List ....

[Bs1524 in reply to ThreeSmiles]

Gosh how long was it before you got on the list. Do you think it is normal practice to not say?

[ThreeSmiles in reply to Bs1524]

It took about 4 years from first diagnosis....

[Hidden in reply to ThreeSmiles]

No score draw. You were not in the game then. 🙄

[O13B]

I to have cirrhosis and have worked hard to improve my health, I cook fresh food every day with a very low salt content plenty of protein and high carb. I lost 30kg but now have a normal BMI, I have improved my mobility from needing a Zimmer frame to a walker and now to hiking poles. I have been dry for 7+ months, it is not easy but it really is worth the effort. I take my diuretics and lactulose(I hate but it’s that or enema’ or a risk of coma) good luck

[GrannyDoll61]

My husband has waited nearly a year to be listed.We are told it will happen tomorrow as they have finally agreed to put him on the transplant list.They just have to look at the latest scan to check his cancer has not got any worse.Its been a difficult journey with many trips to hospital but he hasn't drank a drop since last March.We will both be glad to get tomorrow over but are under no illusions about the hard times ahead.Please give yourself a chance and dont drink