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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:
BlueKaftan · 28/01/2023 13:34

I’m very sorry OP. What were the symptoms that led you getting a diagnosis?

Original poster
Ohdearnamechange · 28/01/2023 13:34

Oh and I'm only 38. The damage was done in my 20s. Like I say, so many people just don't realise they have an issue until it gets to the point of no return.

OP posts:
jackstini · 28/01/2023 13:35

Sorry to hear that OP, you are very young
Are you on the transplant waiting list?

Original poster
Ohdearnamechange · 28/01/2023 13:36

BlueKaftan · 28/01/2023 13:34

I’m very sorry OP. What were the symptoms that led you getting a diagnosis?

I started bleeding almost uncontrollably. It got to the point that I was unable to function in normal life (hard having a Teams meeting with your camera on when you're something like Stephen King's Carrie!)

OP posts:
Ladyglittersparkleseriously · 28/01/2023 13:36

So sorry to hear your news OP. Looking back, did you have any early symptoms?

Cannottryasp00 · 28/01/2023 13:36

Am so sorry. Hope you are getting lots of support. What made you realise you were unwell?

chococherrychoochoo · 28/01/2023 13:37

I'm so sorry that you are going through this.

You said people can react to alcohol differently and haven't drunk more than people you know. Can you quantify how much alcohol you've drunk in an average week?

How was your cirrhosis picked up? What led to them looking into this? I thought you would be experiencing a lot of symptoms before reaching this stage.

Original poster
Ohdearnamechange · 28/01/2023 13:38

jackstini · 28/01/2023 13:35

Sorry to hear that OP, you are very young
Are you on the transplant waiting list?

No - they won't do that until my life is significantly impacted (their definition). But when that happens it's probably going to be too late anyway so I guess I'm quite reigned to it really.

OP posts:
Sandrine1982 · 28/01/2023 13:40

How do you diagnose cirrhosis? What is the test? Is it ultrasound?

Original poster
Ohdearnamechange · 28/01/2023 13:40

chococherrychoochoo · 28/01/2023 13:37

I'm so sorry that you are going through this.

You said people can react to alcohol differently and haven't drunk more than people you know. Can you quantify how much alcohol you've drunk in an average week?

How was your cirrhosis picked up? What led to them looking into this? I thought you would be experiencing a lot of symptoms before reaching this stage.

The thing with cirrhosis is that you generally don't show symptoms until it's quite late - in my case I went from perfectly healthy to having huge bleeds and really bad swelling around my stomach and ankles in a matter of a few days

OP posts:
MargaritaRita · 28/01/2023 13:48

Oh I am so sorry OP. There is cirrhosis in my family, but the person is still going strong after 10 years of no hope diagnosis! Treatments have moved on it seems and I hope that applies to you also. Family member didn't drink alcohol but developed NASH which might be of interest to others.

Can I ask if you had oesophageal varices bleeding?

Original poster
Ohdearnamechange · 28/01/2023 13:48

Sandrine1982 · 28/01/2023 13:40

How do you diagnose cirrhosis? What is the test? Is it ultrasound?

The initial test is a liver ultrasound to see if there's swelling. Plus bloods. Then I've had a fibrosis scan to check the scarring on my liver.

OP posts:
Original poster
Ohdearnamechange · 28/01/2023 13:53

MargaritaRita · 28/01/2023 13:48

Oh I am so sorry OP. There is cirrhosis in my family, but the person is still going strong after 10 years of no hope diagnosis! Treatments have moved on it seems and I hope that applies to you also. Family member didn't drink alcohol but developed NASH which might be of interest to others.

Can I ask if you had oesophageal varices bleeding?

I don't! I also don't have any liver pain. I'm a bit of an anomaly from what I've been told - usually people at my stage have both of those symptoms.

I hope your family member continues to be healthy! I've had some conflicting advice on life expectancy etc so I think there's still some hope there - it's a weird situation with wanting to be totally honest with people but then not wanting to sound like you've overplayed how bad it is IFYSWIM?

OP posts:
MargaritaRita · 28/01/2023 14:12

OP, apologies if I misunderstood, but you mentioned bleeds in your posts and I just wondered if they were similar to my family member's, i.e. from the throat.

I hope you stay well.

2bazookas · 28/01/2023 14:17

There has been a strong element of self medication/self destructiveness which is quite hard to explain to people

You said AMA. I'm asking you exactly what "self medication" and "self-destructiveness" led to cirrhosis.

Bobblemymind · 28/01/2023 14:19

Sorry Op
what did you self medicate with that caused this?

ArtVandalay · 28/01/2023 14:27

What an awful shock OP. I hope you defy the odds.

I know so little about cirrhosis, so I’ll admit I thought it was an alcoholic’s disease. What caused yours if not alcohol? You said self-medicating? Was the bleeding coming up, ie were you vomiting blood?

thewinterwitch · 28/01/2023 14:44

Ohdearnamechange · 28/01/2023 13:36

I started bleeding almost uncontrollably. It got to the point that I was unable to function in normal life (hard having a Teams meeting with your camera on when you're something like Stephen King's Carrie!)

Show quote history

But that would be from esophageal or gastral varices, which you've since said you don't have?

Sandrine1982 · 28/01/2023 15:54

Could you get a fibro scan on the NHS or did you have to go private? If private how much was it? Thanks

LawksaMercyMissus · 28/01/2023 16:04

Are you still drinking?

My DH died from cirrhosis three weeks ago.

Original poster
Ohdearnamechange · 28/01/2023 16:12

thewinterwitch · 28/01/2023 14:44

But that would be from esophageal or gastral varices, which you've since said you don't have?

Show quote history

No, blood clotting is a typical symptom. I had a tiny scab on my scalp that wouldn't stop bleeding - I lost so much I needed a blood transfusion

OP posts:
Original poster
Ohdearnamechange · 28/01/2023 16:13

LawksaMercyMissus · 28/01/2023 16:04

Are you still drinking?

My DH died from cirrhosis three weeks ago.

I'm so sorry x. No I'm not

OP posts:
Harryisabollock · 28/01/2023 16:16

Ohdearnamechange · 28/01/2023 13:53

I don't! I also don't have any liver pain. I'm a bit of an anomaly from what I've been told - usually people at my stage have both of those symptoms.

I hope your family member continues to be healthy! I've had some conflicting advice on life expectancy etc so I think there's still some hope there - it's a weird situation with wanting to be totally honest with people but then not wanting to sound like you've overplayed how bad it is IFYSWIM?

Show quote history

In Jan 22 a family member was given a year to live with cirrhosis of the liver. Heavy drinker 40 years old. He was rushed to hospital after refusing to seek help which blew the family apart a bit. Fast forward to now and by some miracle is now off all medication with no limiting factors. Radically overhauled his diet and lifestyle and we have him back. Can't help but think he was misdiagnosed somehow but his bloods and scans are all good.

Original poster
Ohdearnamechange · 28/01/2023 16:17

ArtVandalay · 28/01/2023 14:27

What an awful shock OP. I hope you defy the odds.

I know so little about cirrhosis, so I’ll admit I thought it was an alcoholic’s disease. What caused yours if not alcohol? You said self-medicating? Was the bleeding coming up, ie were you vomiting blood?

It was alcohol. Not going to sugar coat it but I just don't think a lot of people realise how much damage they may be doing to themselves

OP posts:
PumpkinPastiez · 28/01/2023 16:18

Did it show up on blood tests?