Cirrhosis : Dying from liver cirrhosis... - British Liver Trust

British Liver Trust

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Cirrhosis

Montys profile image
Montys
β€’26 Replies

Dying from liver cirrhosis and its complications eg bleeding varices is a slow and painful way to go. The craving for alcohol during this illness strips you of your mind and dignity.

On the whole, hospitals won't have as much sympathy for you as, let's say an illness that you have no control over, like cancer for instance.

I'm sure everyone reading this will understand.

After thirty years of drinking alcohol ( I knew it would catch up with me), I haven't drank for ten years.

Unfortunately, the depression and the massive hole left from stopping is something we just got to deal with in our own ways.

A friend of mine recently died from liver cirrhosis and was in denial right until it was too late.

Love to you all and one day at a time.

πŸ€πŸ€πŸ’–

26 Replies
β€’

Sorry for the loss of your friend, it's awful. And I hope you find support for any mental anguish you're going through--it may be one of the worst diseases of all. I've seen it from up close, and felt it too. It can pass. There are many wonderful voices in this community that have been through everything you can imagine, it's a grear place to find guidance.

I am sure the Trust mods will be able to point you to many wonderful resources you all have in the UK.

Curious, were you diagnosed 10 years ago, or just recently?

I do have one quibble with your comment--whether the cause is alcoholism, poor diet/lacknof exercise, risky behavior/drug use, bad happenstance, genetics, or one of many other causes of cirrhosis, I don't think it's fair to suggest anyone "has control" over it (though I agree what you mean regarding the perception).

No one chooses cirrhosis as others here have pointed out on other threads. Many if not all who engaged in the behaviors that caused it, if lifestyle was the culprit, had no idea of the actual risk they were in, or had any real timely warning of the development of the disease. Many here have pointed out that cirrhosis is the "silent killer"--few know liver disease is impending until it is too late to reverse it.

Stigma surrounding cirrhosis discourages those who need assistance from seeking it, and it justifies some (by no means all or most) who are professionally obligated to care for the ill to consider their wards with contempt, or in any event with less than empathy. Everyone who is sick, be it from liver disease of any etiology to any other illness, deserves to be treated with respect and compassion, and as a human deserves the best level of care we have collectively been able to develop. I hope that we all can demand at least as much for our fellow (wo)man.

The speeding driver who negligently wrecks his car and breaks his body is not disdained--the careless diver who jumps head first into shallow water and loses use of limbs is not sneered at. Liver disease, whatever the cause, should be no different. The stigma of cirrhosis directed to alcoholics, drug users, overeaters, etc., also only delays any real progress on finding treatments and cures, despite the tremendous costs liver disease places on society--that harms everyone suffering from it, including those who were not as foolish or naive with their health and suffer nonetheless.

I apologize for the lengthy response. I may be an anonymous stranger, but I'm here and do care. Be well, or at least better if well is too much to wish for at this time.

Montys profile image
Montys in reply to Str8jacket

Thank you for your reply. It was a very interesting read. My varices burst about ten years ago and living alone, I was walking around with a huge stomach thinking it was severe constipation..but it was ascites.

After vomiting up copius amounts of blood, everything is a blurr from there.

I found myself in resuscitation at hospital.

Decompensated cirrhosis.

I wasn't expected to make it unless a liver became available.

Even at this stage, I sneaked out of hospital to buy alcohol!!

There were quite a few people like me in the gastroenterology ward.

One day, I sneaked out again, being yellow, 5 stones and in a lot of pain from banded varices, sat in the hospital grounds (early hours of morning) and poured all the alcohol away into a drain!!

I still don't know why I did that at that moment, perhaps because I was given six months to live if I continued!!

After many more bleeding varices and banding, my cirrhosis is compensated!

I still have stomach issues too due to alcohol.

What I'm finding the most difficult by far is the really low depression.

The massive hole left unfilled, regardless of what I do .

Self Isolated, with dark moods.

I hate it with a passion πŸ˜’.

However, I'm still alive.

🀝

YummyBear profile image
YummyBear in reply to Montys

Trying reading Buddha quotations on Youtube, it can really give you peace of mind and eases your depression. I wish you well.

Str8jacket profile image
Str8jacket in reply to Montys

Congratulations on putting up such a long fight, that's quite an inspiration.

Ed.- I hope you stick around a while and continue to share your story with other newcomers if you're comfortable with that. It gives one hope to see how some are able to hang on and fight with liver disease--there are so many inspirational commenters here who do just that for others who are coming up against the biggest challenge of their lives, and there is great value in that.

Montys profile image
Montys in reply to Str8jacket

I only stumbled across this group by accident. Alcohol had such a hold over me, that I totally neglected my personal life.

I chose alcohol over absolutely everything.

So at 54 , alone, no wife, kids etc.

Each day is a fight, like an invisible attack on the mind.

All self inflicted.

I'm not after pity, sympathy etc.

I just wanted to tell the good people here something I have never shared with anyone, including my GP before.

🀝🀝

Charlie-legs profile image
Charlie-legs in reply to Montys

Sounds very familiar. The moment I admitted it to myself things changed.

Talk as much as you like coming with every word you throw out there, it's one thing less in the tumble dryer of the mind.πŸ€ͺπŸ˜»πŸˆβ€β¬›

Montys profile image
Montys in reply to Charlie-legs

You do put a little smile on my face with your emojis! All the best to you as always βœŒπŸ‘

Bootandall profile image
Bootandall in reply to Montys

If l may suggest, could that "massive unfilled hole" be unresolved emotions? Perhaps grief, even anger? Certainly justified, as you pointed out, cirrhosis can make you feel lonely and unloved, or even unlovable.

By acknowledging these hard feelings and learning to move through them, allowing yourself to sit with and feel these emotions without pushing them away, you may feel more at peace. I'm working right now myself on putting supports in place for myself, it's not easy to banish self-defeating thoughts is it?

My sympathies on the loss of your friend.

Montys profile image
Montys in reply to Bootandall

Thank you. I will have a good think about your post. You take care too.🀝🀝

Montys profile image
Montys in reply to Bootandall

Hi πŸ‘‹. Thank you. You have nailed it. Something I thought might be my problem for over 35 years, must be my real issue. Have a beautiful day and stay well. X.

Tia2021 profile image
Tia2021 in reply to Montys

You most certainly are still alive and incredibly brave when you poured that drink away, you choose to live, you have come so far and an inspiration to others, I can relate to the the constant battle in your head, but each morning we have succeeded all be it one heck of a battle, take care πŸ’›πŸ’›xx

YummyBear profile image
YummyBear in reply to Str8jacket

Thank you Str8jacket for your interesting and thought-provoking views on cirrhosis. My diagnosis NARLD (5 years ago by chance with a CT for an unrelated issue) came as a complete shock, as I have never been overweight nor a drinker. I was diagnosed with a fatty liver 15 years ago but only watched my fatty food intake which lowered the cholesterol. I never understood that a good diet had an impact on the liver and have only realised recently, that as a child, I was finicky and not keen on food; eating meat, veggies, fruit were my worst nightmare! In my opinion, this lifestyle has in latter years had a negative outcome in my liver.

Str8jacket profile image
Str8jacket in reply to YummyBear

Thanks YB for sharing your tale. Hope your liver condition was spotted in time to allow preventive steps and avoid any serious complication (assuming that by NARLD you mean no cirrhosis or other symptoms yet).

One thing that has struck me during the past few months of my own journey is a seeming lack of solidarity among (a small minority, most are very caring) liver patients on various online communities, and the stigma that Montys and others have noted in medical settings (even against those with non-alcoholic causes of liver disease, guilt by association, though there should not be guilt in the first place).

It's unfortunate, because the common enemy must be liver failure and the shameful lack of options for those with it. While etiology may be sometimes relevant from a clinical perspective, when liver patients and medical professionals shun or shame a certain cohort of liver patients, it does everyone a disservice. One sees comments from some NASH cirrhosis sufferers exasperated/offended at medical professionals suggesting their disease may have been caused alcohol, and defending themselves on that account.

Perhaps it would be better for advancing the fight against liver disease if such shunning were unacceptable, regardless of etiology, and all liver patients came together to openly push for policies that can really start to tackle this horrible disease. Many who have cirrhosis have it from alcohol, obviously. Pushing that large share of allies into the shadows hinders progress against liver disease for all.

People like Montys shouldn't feel shame for what they've been through, they should be encouraged and embraced for turning their lives around and facing their dire health challenges.

On a related note, unlike with various cancers, there don't seem to be many(any?!) active or prominent patient-based liver advocacy organizations raising funds and pushing for breakthrough research. As a result, we see maybe one new treatment pop up every 10-15 years, therapies borrowed from other fields that are often more like bandaids for bullet wounds than real breakthroughs. Very little effort in the research community is directed towards viable solutions for end stage liver disease (not counting the steady barrage of rat research that makes for catchy headlines yet results in little clinical research in people). That is a direct result of the politics surrounding liver disease, including the stigma that Montys points out.

Getting off my soapbox now, not trying to hijack Montys's thread. Take care.

Montys profile image
Montys in reply to Str8jacket

Beautifully written. πŸ™πŸ€πŸ€

besttimes profile image
besttimes in reply to Str8jacket

Very well written, Str8jacket. I was stunned by the lack of wanting to learn anything from my late husband's predicament. The medical staff had every opportunity to learn, but relied heavily on outdated, textbook information (they even recited me textbook information when I was looking for answers from them following my husband's death). They have no clue, and get paid for it. There's no appetite for learning in this field, it seems, but they insist on being the experts, not us. The stigma will remain until something changes.

Bang on ‼️It's very hard to say the word Cirrhosis because of the reactions.

πŸ€πŸ™„πŸ€’πŸ§πŸ§πŸ₯±πŸ₯΄πŸ€«πŸ€£πŸ€£πŸ˜ΆπŸ˜ΆπŸ˜³πŸ€­

I'm a nurse and should have known better, but I'm ashamed to say that the first drug/alcoholic, I was really shocked at the mess she was in but the way she was treated shocked me more. It opened my eyes. I felt pure compassion when bathing her but the other nurse was diabolical with her. My nan would say 'there but for the grace of God, go I '

I asked the nurse why the woman was so ill and she said that, oh Cirrhosis of the liver, it's her own fault for being a f🀬king alchy and a druggy! Then a rant about them not deserving pampering chuck them 😀 out to die and keep the beds for decent people 😳πŸ₯΅πŸ€―πŸ₯ΊπŸ˜‘🀯.

Things HAVE to be addressed. πŸ’ͺπŸ™πŸ’ͺπŸ‘€πŸ‘…πŸ’πŸ¦§πŸ¦₯πŸ¦‰πŸ¦ŽπŸ§ΈπŸͺ’🎭πŸ₯°

Sorry, I love emoji.

Michelle

True, and I always thought it was purely alcoholism. After I was hospitalised ( a routine blood test caught me out as it was so deranged ) and diagnosed with Cirrhosis, I was so ashamed, embarrassed. I just joked that I had pickled and preserved my liver.

A Cirrhosis Awareness campaign, would be a good idea πŸ’‘ πŸ‘ These Awareness campaigns do work. I don't think that a Yellow ribbon would help with the stigma!πŸ’ŒπŸˆβ€β¬›

My comment may seem glib, it isn't meant to be because I feel the weight of your depression.This is something I was told that has changed the way I view my life.

。。。

You are not dying from cirrhosis, you are living with it. You aren't dying until the last few minutes or your last breath.

。。。

I truly hope that you can find the help you need

Xx

Str8jacket profile image
Str8jacket in reply to mrsmerlin

"...you are living with it." Wonderful quote, thank you.

Trust9 profile image
Trust9Administrator

Hello Montys,

I am so sorry to hear about your friend.

Congratulations on your prolonged abstinence.

I am sure our forum members will support you and share their experiences .

I would encourage you to reach out to your GP for further support with your depression.

You can also call our nurse led helpline on 0800 652 7330 Mon-Fri 10am-3pm.

Take care,

Trust9

Montys profile image
Montys in reply to Trust9

Thank you. πŸ™

Pop on the podcast β€œthis naked mind” (it’s free)

It will put you in a better headspace. Has changed the way I view things.

So sorry to hear of your loss, it certainly is a daily battle, you are right we are judged and certainly from my experience don't get equal medical attention as other diseases, the daily battle of pain, depression and a general downward spiral of health are huge when all compounded, we are all brace warriors who refuse to give up and choose life, so many of us can say with insight we would of choose differently, virtual hugs and love to all, X

Montys profile image
Montys in reply to Tia2021

You obviously know how I feel. Take care. One day at a time x

My husband was diagnosed with cirrhosis several years ago and had a transplant 3 years ago. When he tells people he had cirrhosis and a liver transplant he is judged. However he had NASH cirrhosis and did not have a drink problem. They found cancer in his old liver when it was removed so he tends to tell people that the transplant was due to cancer as then he feels he is not judged. Nobody should judge you - it is a cruel disease whatever the cause and there but for the grace of god..... Good luck with your fight xx

Sorry that you are poorly. I have an old work colleague, she is a vodka drinker. She suffered liver failure.Sh e was in a vodka drinker and after all she has been through she told me that she has gone back to vodka and is bad, has carers and is in agony all of the time. She is also only 51.

I have mentally removed the word ALCOHOL from my vocabulary, If I had the strength to sober up without any anti craving meds. I DO understand that they must rake the past up, however I have said WHY have you not stopped to ask me WHY I started self medicating. I think that I may have gotten through to them.

I wish you well. Keep in touch, Michelle πŸ’Œ

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