Sally’s story: “It’s not only binge-drinkers and ‘alcoholics’ who get cirrhosis.”

Sally lost her husband, Mike, to alcohol-related liver disease. She decided to share his story, written as a letter to him, to help raise awareness of the condition. Thank you, Sally. Please be aware that some people may find parts of Mike's story upsetting. 

We thought you would want to give others the chance to see their grandchildren grow up, which you missed.

No-one would have described you as a 'boozer'.  You never set out to 'get bladdered'. You rarely felt worse for wear in the morning. You just liked to open a bottle of wine before dinner, and your wife only wanted a single glass. There are ten units in a bottle, so you were having eight. Almost every night.

Yes, when you did the regular health checks, the GP said you needed to lose weight and your alcohol intake was too high - but you’d been overweight for years and your mother had lived till 85 on her half bottle of red every night. So it was nothing to worry about. It wasn’t like you were an alcoholic. You never drank in the daytime and were an active and hardworking 72 year old, mowing the lawn, chopping wood, DIYing and volunteering. Before lockdown you had even gone for an early morning swim every weekday morning. You were fit enough for your age, weren’t you?

What we didn’t know (and it needs to be more widely known) is that not only binge-drinkers and 'alcoholics' get cirrhosis, and it is asymptomatic until it’s too late to reverse. You don’t know your liver is dying until one day there is a health crisis of some sort, perhaps an operation, and it gives up. It is not a nice way to go.

Cirrhosis

So you’re in hospital, recovering from what should have been a straightforward operation on the bowel, and they say you’ll be home next week.  The surgeon says that when they operated they also diagnosed cirrhosis – irreversible liver damage - but provided you stop drinking entirely the damaged liver can go on operating on a reduced capacity and you can have a few more years if you are lucky. It is more common than people realise, he says. This is a shock. It’s a wake-up call in so many ways, you say.

You watch a beautiful sunrise through your hospital window and you realise how precious life is. When you get home, you say, it’s a lifestyle change. No more alcohol – it was a habit, not an addiction – you will get back to as normal a life as you can. We start thinking about arrangements for visiting carers to help while you recover.

Ascites

But a severely damaged liver can produce a fluid called ascites, which fills the abdominal cavity. It increases till the pressure is agonising. They insert one drain, and then two, to remove the litres of brown fluid, but it’s continual. Ascites is particularly prone to infection, so you are being bombarded with antibiotics to try to quell one bug after another. As all the fluid you take in is being diverted to the abdominal cavity, or to your swollen legs, the rest of your body is becoming dehydrated. Your kidneys can only produce a brown dribble and your tongue is so dry, despite sips of water, that you find it hard to speak.

The swelling of the abdomen splits the operation wound wide open, and it is too distended to sew up again. It has to be packed with dressings to heal from the inside. You are becoming delirious with infection, and they take you to Intensive Care to put you on a blood cleansing machine and attack the sepsis. They hope that your liver and kidneys might recover from the crisis enough to function again.

Except they don’t.  You are tenderly nursed, one-to-one, 24/7 in intensive care. Sometimes you are delirious, sometimes you are lucid and we are hopeful.  After ten days they return you to a ward to nurse you as best they can.  The liquid building up inside is not only seeping but occasionally erupting out of the operation wound in a flood of brown gunge that soaks the bed and splashes on the floor - to your  distress and disgust. The sepsis cannot be overcome despite multiple antibiotics. You make your dry tongue move enough to say slowly but carefully to one of the many dedicated consultants that you don’t want to die but if you have to, you don’t want it to be long drawn out.

They put you on palliative care - only intravenous painkillers. At last we are allowed to stay with you as long as we want instead of the one-hour, one-person a day Covid-restricted visiting. They don’t know how long it will be. Could be an hour or a week, they say. You are sleepy but responsive in the mornings and we make you smile with funny stories of happy times but you can’t work your tongue to speak more than a word or two. We tell you how much we love you. Mostly you are asleep. We go home at night and return to be with you the following morning. On the fourth morning we get a call at 6.30am saying you have slipped away, six weeks after you went into hospital.

More common than people think

People joke about their alcohol intake.  I don’t find it amusing, now I know what it is to die of liver failure. So many people are sleepwalking casually towards the same situation without knowing what it means. There is not enough publicity about this. Is it even known how big a problem it is? The 'cause of death' was multi-organ failure, post- operative sepsis – and cirrhosis only appeared in the underlying conditions, but it was the cause of the sepsis. Is anyone collecting this information and flagging it to the NHS as a widespread problem? The consultant said it was more common than people think.

The police find that Speeding Awareness courses are much more effective at curbing speeding than fines, because they make people aware of the consequences of their behaviour rather than merely punishing them. How about an Alcohol Awareness talk at community level for those who are at risk, to raise awareness of this silent disease and the agonies of dying from it?

A mere blood test result means nothing to the layman. The GP didn’t even recommend a scan, though he must have known where this was likely to lead. If the courses were as effective as the Speed Awareness courses, this could save the NHS millions – I don’t exaggerate. It could save many individuals so much personal agony, if only they understood in time that 'just a bottle of wine with dinner' is a potential killer. That wake-up call has to come earlier.  Because alcohol-related cirrhosis is not just that thing that 'alcoholics' get.

It was a dilemma for us whether to publish this, but we thought you would want to give others the chance to see their grandchildren grow up, which you missed.

 

 

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