Newly Diagnosed

[davidsa57]

After a battery of tests, I've recently been diagnosed with end stage cirrhosis according to my doctor, but haven't yet seen a specialist or had a biopsy. Hopefully someone can help answer a few questions until I get seen.

Is final stage cirrhosis life limiting and what is life expectancy?

How will I know what type of cirrhosis I have?

How long until I see the specialist?

What type of treatment (if any) can I expect?

Please could someone help. I feel as though I've been left adrift at sea and any answers or ideas would be much appreciated.

[BritishLiverTrust4]

You may wish to call the British Liver Trust Helpline which is available for anyone affected by a liver condition. Call 0800 652 7330 between 10am and 3pm Monday to Friday (excluding bank holidays) or email [e-mail] (emails can be sent at any time and are answered during helpline hours).

They will be able to talk through the information given to you by the GP to help make sense of it and suggest a way forward.

Also the British Liver Trust runs a range of online support groups which you may find beneficial. If so please register your interest here. britishlivertrust.org.uk/vi...

[pushthrough]

I’m sorry to hear that David. I was/am in the same boat at 39 with compensated cirrhosis. First thing don’t Google anything. There is no set life expectancy really because everyone is different and is at different stages of the disease. Compensated vs decompensated and all the other stages between that I’m sure Katie will mention. It’s terrifying when you first hear the news. However apparently many people live for 20+ years once the cause of the damage is removed. For me they said alcohol so I haven’t drank in over a year. Of course diet and exercising is very helpful. See a dietician because we can’t eat like we use to with the disease. I’m still having a hard time with that myself. I loved salt and fried food. Keep your chin up friend and let’s live a long time.

G.

[pushthrough]

Btw it will help others if you tell them what caused the disease, whether your compensated (don’t really have symptoms liver is performing it’s job) or decompensated. (Liver is not working good). Any symptoms you might have. For instance I’m laying in bed on my lunch break right now so I’m tired often. Basically anything you can share will help. This place is great and everyone is wonderful.

[davidsa57]

Thanks for the reply and advice, Pushthrough

I don't know if I have compensated or decompensated cirrhosis as yet.

My skin gets terribly itchy, I have a rash that looks like ringworm and I bleed very easily.

Every 7 to 10 days I have a spell of nausea and vomiting and uncontrollable shivers. This usually lasts a day and after that I'm unable to work for 2 or 3 days due to fatigue. I'm generally sleeping most of the time I'm not at work and even find walking to the station difficult.

I was a drinker ( I always thought moderately) and of course I've now stopped completely. I do wonder if Covid had anything to do with it, at the beginning of 2021 I was in hospital on oxygen and have never felt 100% since.

[Lils2019]

Hi David,Welcome to the forum.

My husband has decompensated cirrhosis, and was diagnosed April 2021, after been admitted to hospital with bleeding varices, after various tests, bloods, X-rays, MRI, fibroscan, ultrasound etc.

He feels very unwell most of the time, has varices, portal hypertension, ascites, chronic fatigue, HE which affects his mood, memory is absolutely awful.

He was declined for transplant last Nov due to other health issues.

Husband often complains he’s cold even on warm days.

My husbands cirrhosis has been caused by alcohol, his relationship with the stuff was very unhealthy, although he hasn’t touched a drop in nearly 2 years, sadly the damage to his liver is extensive and very very doubtful that it can be reversed, but hey where there is life there is hope, we’re not ready to give up yet!

Everyone is an individual and obviously life expectancy will be different for all.

Seeing the consultants at the moment can be quite lengthy, due to backlogs, the consultant should discuss the test results etc and be able to tell you whether you’re compensated or decompensated.

The consultant will discuss various options available to you and will refer you for transplant if they think that is what is needed.

Try not to worry to much, make notes of any questions you have to discuss with consultant.

Has GP referred to consultant do you know?

Take care x

[Marquee1880]

Morning,

I had health issues last July (aged 57), which eventually led to a diagnosis of Compensated Cirrhosis only back in March. Some of the testing process can take forever and I am still waiting for further tests. This naturally causes very deep concern for not just yourself but also your family. The BLT helpline was by far the best support I found, Dr Google will just scare you if you are not careful.

Mine is probably linked to alcohol, but not confirmed. I haven't drunk since it was first suggested back last August that I had Cirrhosis. My advice is to exercise to the best of your ability, watch your diet - there is loads of advice on the BLT site. Find time for yourself to chill / meditate or whatever you want to call it. It may not be easy, I was fatigued for quite some time, but I have managed to push through it and I now am doing more exercise than I have for a few years. Oh, if you don't drink much water - hit it hard! I can't believe the difference it makes.

I hope this helps.

Simon

[Dogbot]

Hi davidsa57 I’m so sorry to hear about your condition, I have been off alcohol for nearly 19 years now because my liver packed up and I was rushed to hospital so yes you can live for a long time after certain diagnosis but the questions you are asking should be answered by your doctors, go back and ask them 👍. Good luck Stay Safe All

Dogbot 🐶🌈Dave

[Roy1955]

You sound very similar to me!Firstly you probably misunderstood the GP.

The medical term for cirrhosis is end stage liver disease.

They are both the same thing and nothing to do with end of life or severity of the disease.

Liver disease is staged and put simply its good, fatty, chirrotic.

Cirrhosis is the end stage of the naming process.

If your not bloating with fluid in your belly, coughing up or pooping blood, or away with the fairy's mentally the chances are your compensated.

Chances are also good for a normal lifespan if you look after your health.

I have that ringworm type rash and several Dr's said it's nothing to do with my liver.

I had it biopsied and it turned out to be granuloma anulari.

Harmless but ugly.

Started with one lesion and now have about 20.

Bad news is they join up to form large patches but good news is they burn out in 3-4 years.

Do get it checked though because there's another condition that looks similar but is cancerous.

Your NOT in the final stage of cirrhosis!

[Aotea2012]

I’m sorry to read your post. I agree with Dogbot, you need greater clarity on your condition from your doctors. I’m not sure what tests you’ve had. Blood tests will indicate a problem but they can’t give a cirrhosis diagnosis from them alone. I have cirrhosis and my bloods are all normal. If you’ve had an ultrasound, which some GPs can now access directly, then this can indicate cirrhosis. You should have been given a copy of the report though and someone explained what it meant. Only a biopsy or better a FibroScan can really pinpoint the stage of your cirrhosis. You sound pretty unwell. I’d probably go back to the GP and ask them to explain their diagnosis to you. Then talk through the next steps with them, including how urgent they’ve made your referral, whether there’s any support you can access whilst you are waiting to see a specialist and whether they can do anything to help with your symptoms. It’s understandable to feel a bit shell shocked when receiving bad health news, so I’m sure they’ll be happy to go through everything with you. Don’t be frightened to push for answers on how they’ve come to their diagnosis although I’m sure they’ll probably explain that when you speak to them. Keep us posted.

[Alcopop123 in reply to Aotea2012]

Hi Aotea. Just wondering, if your bloods were all fine, how did you end up getting a diagnosis of cirrhosis? How come they didn't just assume your liver was fine from the bloods? I mean, my bloods came back normal, but should I still suspect my liver is bad? 🙁Thanks

[Aotea2012 in reply to Alcopop123]

I was very sick to start with. I was admitted to hospital with a deep rooted infection where I was diagnosed with cirrhosis. My bloods were far from fine at that point. As my health has improved my bloods have returned to normal. I still have cirrhosis though, but am now well compensated.

[Doechloe]

hi , i was diagnosed with liver cirrhosis with portal hypertension , 2020 and am still waiting for a biopsy. but have lost a lot of weight now and exercising a lot, but for you wait till you have seen a consultant, they are the only ones can really say what stage you are in, ring that helpline number and they can give you advice, ive been told that mine is compensated,

[davidsa57]

Thank you for all your advice. It's wonderful to know I'm not alone with this.

[YummyBear]

Please speak to British Liver Trust about your concerns. I cannot fathom why you would have to wait long to see a consultant. Call British Liver Trust:0800 652 7330 and is open from 10am-3pm Monday to Friday (except bank holidays).

I wish you well.