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AMA
Original poster

I have cirrhosis. AMA!

142 replies

Ohdearnamechange · 28/01/2023 13:32

Hi! I have cirrhosis. It's basically end stage so I have a couple of years - unfortunately they caught it a bit late for anything to be done for it.

Just closing off some possible questions - no I haven't drunk more than most people I know. People's bodies react differently apparently. There has been a strong element of self medication/self destructiveness which is quite hard to explain to people (I also have BPD and PTSD). I feel massive guilt that I'm putting my family through this, and would really like to give any support or advice to anyone who has worries - so many people don't seek help until it's too late.

OP posts:
ShockedAndAwake · 29/01/2023 00:22

Did you take drugs too? If so, which ones? Also, was there a reason you drank so much? Were you unhappy or shy or was there some other reason?

I'm sorry that you are in this situation. It's very sad. I hope you have lots of support.

Sandrine1982 · 29/01/2023 08:57

what about your liver functions blood tests?

have you had them in recent past and did they show anything? Or did they come back normal?

i've heard they're not always the best indicator of the damage done?

Sandrine1982 · 29/01/2023 08:58

Thanks for this interesting thread, BTW. Wishing you well 🌻

buffydavis · 31/01/2023 23:23

Ask me anything! But don't ask me anything practical like my fibroscan scores or my LFTs!

Original poster
Ohdearnamechange · 01/02/2023 00:43

buffydavis · 31/01/2023 23:23

Ask me anything! But don't ask me anything practical like my fibroscan scores or my LFTs!

Sorry, I've been at work and haven't had loads of time to answer questions. My liver score is 35 of that makes it clearer how advanced my liver disease is

OP posts:
PumpkinPastiez · 01/02/2023 01:10

buffydavis · 31/01/2023 23:23

Ask me anything! But don't ask me anything practical like my fibroscan scores or my LFTs!

Sorry that's pretty harsh because it's ama not interrogate me over my medical results

MrsGhandi · 01/02/2023 01:22

8 cans a day - how many years are we talking about?

buffydavis · 01/02/2023 04:27

PumpkinPastiez · 01/02/2023 01:10

Sorry that's pretty harsh because it's ama not interrogate me over my medical results

Show quote history

I think it is relevant, having known many people with chronic liver disease, and quite a few who have had liver transplants as a result. Anyone who has been assessed for serious liver disease would know their results, and hence how bad the situation is with the development and stage of fibrosis or cirrhosis. They are perfectly reasonable questions.

buffydavis · 01/02/2023 04:31

Ohdearnamechange · 01/02/2023 00:43

Sorry, I've been at work and haven't had loads of time to answer questions. My liver score is 35 of that makes it clearer how advanced my liver disease is

Show quote history

I don't understand that terminology, sorry. A fibroscan score is not a figure like that. LFTs are very specific. I wonder do you mean a CAP score, in which case 35% is not so bad. Have you had a liver biopsy done?

Original poster
Ohdearnamechange · 01/02/2023 10:29

buffydavis · 01/02/2023 04:31

I don't understand that terminology, sorry. A fibroscan score is not a figure like that. LFTs are very specific. I wonder do you mean a CAP score, in which case 35% is not so bad. Have you had a liver biopsy done?

Show quote history

If you really want to know, after I received my diagnosis and my consultant informed me that I was on the severe end of f4 cirrhosis I went somewhat into denial. I obviously was given my results and they were bad, but at the time I couldn't deal so threw away the letter. Maybe I shouldn't have made this post without all of the details about my diagnosis but my intention was just to highlight to people that if they have any concerns they should get tested before it's too late.

OP posts:
Original poster
Ohdearnamechange · 01/02/2023 10:33

MrsGhandi · 01/02/2023 01:22

8 cans a day - how many years are we talking about?

About 5. I was pretty much teetotal in my 20s. But people are affected in different ways which is basically why I posted this

OP posts:
Original poster
Ohdearnamechange · 01/02/2023 10:40

Sandrine1982 · 29/01/2023 08:57

what about your liver functions blood tests?

have you had them in recent past and did they show anything? Or did they come back normal?

i've heard they're not always the best indicator of the damage done?

I had liver function bloods done initially and an ultrasound and the results were bad enough for the consultant to then conduct a fibrosis scan which is how they can see how bad the scarring is. I'm booked in next month for a liver cancer test which is a bit scary

OP posts:
Original poster
Ohdearnamechange · 01/02/2023 10:43

ShockedAndAwake · 29/01/2023 00:22

Did you take drugs too? If so, which ones? Also, was there a reason you drank so much? Were you unhappy or shy or was there some other reason?

I'm sorry that you are in this situation. It's very sad. I hope you have lots of support.

Thanks. I have bpd and c-ptsd as a result of an abusive relationship. So definitely an element of self medication.

OP posts:
thewinterwitch · 01/02/2023 11:29

Ohdearnamechange · 01/02/2023 10:29

If you really want to know, after I received my diagnosis and my consultant informed me that I was on the severe end of f4 cirrhosis I went somewhat into denial. I obviously was given my results and they were bad, but at the time I couldn't deal so threw away the letter. Maybe I shouldn't have made this post without all of the details about my diagnosis but my intention was just to highlight to people that if they have any concerns they should get tested before it's too late.

Show quote history

Yes, I'm really sorry, I missed the bit in your previous posts where you mentioned ascites. I had an exboyfriend who was diagnosed with cirrhosis at 14, he was a severe alcoholic even then, but he got sober eventually and is still alive thirty plus years later. I was thinking maybe you'd just seen a GP and sometimes they overreact to LFTs etc. Sorry for what you are going through.

buffydavis · 01/02/2023 12:30

Ohdearnamechange · 01/02/2023 10:29

If you really want to know, after I received my diagnosis and my consultant informed me that I was on the severe end of f4 cirrhosis I went somewhat into denial. I obviously was given my results and they were bad, but at the time I couldn't deal so threw away the letter. Maybe I shouldn't have made this post without all of the details about my diagnosis but my intention was just to highlight to people that if they have any concerns they should get tested before it's too late.

Show quote history

F4 is not good. My fibroscans were always in the normal range, despite many years of chronic liver disease. I have managed my condition in the opposite way to you, collecting every report and tracking all the numbers. I have a whole drawer in a filing cabinet of reports and new info...

I do hope your biopsy goes well and that your condition stabilises and that you are able to have in fact many more good years. It really is a rough diagnosis.

Original poster
Ohdearnamechange · 01/02/2023 14:08

thewinterwitch · 01/02/2023 11:29

Yes, I'm really sorry, I missed the bit in your previous posts where you mentioned ascites. I had an exboyfriend who was diagnosed with cirrhosis at 14, he was a severe alcoholic even then, but he got sober eventually and is still alive thirty plus years later. I was thinking maybe you'd just seen a GP and sometimes they overreact to LFTs etc. Sorry for what you are going through.

Show quote history

No it's fine! I really do feel that a lot of people are in denial about how much they're drinking and that leads a lot of people to think I'm exaggerating or attention seeking (I don't mean you!). But yes, I have ascites, oedama, itching, muscle cramps, blood clotting issues, thread veins all over my neck... pretty much every symptom. And they all presented within a few weeks - before that cycling miles every day, hiking, climbing. It was all so sudden and that's why I want people to at least check x

OP posts:
AlmondBake · 01/02/2023 14:34

It's really good of you to start this thread. Alcohol is everywhere and so normalised - it's helpful to understand the dangers. When you watch a tv drama the actors are always pouring themselves large glasses of wine like it's water. I know I drink too much and threads like this always give me pause for thought.

It's interesting how alcohol affects some people worse than others. I had a friend who drank excessively in his 20s and 30s - and may well have carried on but he moved away so we didn't see each other any more. We shared a flat for a few years and I'd say he would get through 6-8 cans of strong lager a night. And smoke heavily. (It was his way of dealing with his anxiety/panic attacks/depression). Presumably his liver isn't great now but I'm not aware of any major issues. I hear from him once or twice a year so he's still alive and in his 60s now. He mentions a few health issues but none directly liver related.

fantasmasgoria1 · 01/02/2023 15:59

This thread is very interesting and I have learned from it. My sibling is an alcoholic. They have been drinking heavily for 25 years. This is due to self medication for schizophrenia. They do have a psychiatrist now etc and they have had several periods of abstinence some short some long. They drink up to 12 cans a day , average of 8. When I ask them if their bloods are ok they say yes but I wonder if they are telling the truth.

futuremoneyinbank · 01/02/2023 16:08

I've lost a young friend from to the same. I have to say how brave you are to post this as it is really not discussed enough, especially considering they are still allowing alcohol advertising (no other drug gets that luxury apart from caffeine). My friend struggled to get help. The people her GP made her see (Turning Point) were useless; took months to get around to her, made her fill in complex paperwork with a drinking diary (she said made her wonder if they didn't believe her) with one lady actually shouting at her for not eating correctly. She was told twice she was end of life and just sent home by the consultants - no number for a therapist or ideas for help. She also detoxed twice in hospital (lovely people and she felt terrible for needing it/using the NHS) but they then sent her home again immediately - no therapy. It's shocking that the services are at this point. People working these jobs are angels but i'm not surprised they are leaving in their droves as the services aren't fit for purpose.

Sorry to rant a bit. I really feel for you and hope you are coming to terms with the prognosis.

2023forme · 02/02/2023 12:28

EarringsandLipstick · 28/01/2023 17:33

God I'm sorry OP. 💐 I'm really hoping that you can get help via a transplant

But 6 - 8 drinks a day? How did you not realise that was a huge amount, and of course you were drunk.

I'm really sorry for the situation you are in but it's concerning that you minimise it in your OP, as you not really having drunk that much - you did.

@EarringsandLipstick I’m a problem drinker (currently sober). People who abuse alcohol build up tolerance - it’s a real physiological change which means you require more and a more alcohol to get drunk. At the height of my problem, I could drink probably about 10 x 25ml standard vodka measures without even noticing. I was onto a bottle of vodka a night to feel/ appear drunk.

My family always said they “knew straight away” when I’d been drinking - what they didn’t know was i could drink nearly a half bottle on the way home from work, make and eat dinner/chat with them, and then drink a bottle of wine/more vodka and only then would they “know I’d been drinking”. So please don’t call out the OP for saying she wasn’t drunk on 6-8 drinks.

@Ohdearnamechange - I’m sorry this has happened to you. There but for the grace of God go I. Wishing you all the best for your future health.

HikingforScenery · 04/02/2023 17:35

This is really eye-opening, OP. Thank you for sharing. I don’t drink and no one is my social circle really does, neither do my parents or siblings , etc etc

I really hope your prognosis gets better with treatments. Take care

petshihtzu · 28/07/2023 22:28

Hi OP sorry to realive this thread but how come you are not able to get a transplant ? I read you said it's too late but if you have a few years does that not help? I lost my mum to cirrhosis just over three weeks ago, leaving me and my sister at 23 and 29 😓. We are here behind you, keep going 🤞🙏

wahmeh · 29/08/2023 14:23

Hi OP I just wondered how you are getting on now?

Original poster
Ohdearnamechange · 29/08/2023 15:04

petshihtzu · 28/07/2023 22:28

Hi OP sorry to realive this thread but how come you are not able to get a transplant ? I read you said it's too late but if you have a few years does that not help? I lost my mum to cirrhosis just over three weeks ago, leaving me and my sister at 23 and 29 😓. We are here behind you, keep going 🤞🙏

Sorry I missed this! I'm so, so sorry for the loss of your mum. Basically it has to get really bad (as in not functioning) before they'll consider a transplant. I'm stage 4 so it's end stage but understandably they don't want to use up NHS resources until it's critical. This was explained really badly to me by my consultant so I didn't understand that there might be hope in the future. Again, so sorry for your mum x

OP posts:
Original poster
Ohdearnamechange · 29/08/2023 15:08

wahmeh · 29/08/2023 14:23

Hi OP I just wondered how you are getting on now?

I'm actually doing pretty well, thanks for asking. I'm going to a 4 week residential programme in Thailand in a couple of weeks which is focused on treating my underlying mental health issues and trauma that have essentially led to the issues with alcohol (kind of self medication). So things are looking up!

OP posts: