Living with liver disease the awful truth

I have written this as a bit of an update on living with liver disease the awful truth but don’t be too disheartened as there is hope.

Well at least I hope so.

My stomach was getting larger and my skin was more yellow in color so people started to worry, especially if they had not seen me for a while.

I am the worst at going to my doctors, but no more as I have become rather good at it!

The thing is I am not the average person who gets liver disease or so I thought, I was a social wine drinker, rarely drank spirits and exercised with my 10,000 steps every day.

I was actually very healthy.

Yet my liver failed and I was given 48 hours to live. However, “I dodged a bullet” and it’s probably the reason you are reading my blog.

However, I have cirrhosis of the liver. It still feels odd to say to be honest.

The five things I had to do if I was to live (with the help medical help) was :

  • Give up alcohol straight away and I am pleased to say I have not had a social drink since
  • Discover alcohol alternatives
  • Watch my salt and diet
  • Follow medical advice to the letter
  • Get a dietitian which really helped
  • Find a new purpose
  • Do activities that did not involve long lunches with wine
  • Get checked for liver cancer on a regular basis.
  • At the time I was also taking redundancy so yes you could say “my life sucked” in many ways but funnily enough during this time your emotions do funny things. So I was more aware of nature and certainly more grateful. Get your life in order as it takes the pressure off.

I also decided I wanted more fun in my life that did not involve alcohol but there were other factors that caused my liver to fail.

When I started to search for a solution I read about people with weeks to live as my liver was very damaged but also people who were living a good life.

The people I saw on the liver ward really shocked me and I kept thinking is that me?

One thing I realized was that my liver would not recover. It might operate but not at the level it was.

What caused my liver to fail

Stress, genetics, diet and of course wine drinking all played apart.

I remember to this day my symptoms, turning yellow, stomach expanding, extreme fatigue.

It was that moment in accident and emergency when I got rushed in and they instantly offered me a so-called “downer” so help in getting off the alcohol.

The fact is I had not had a glass of wine for a few days and there was no alcohol in my system.

Confusion continued and it got to the point where they were testing me for everything but in the end it was a mix of stress, alcohol, genetics and diet but here was the thing I was determined to live.

Having said all of this I got to know people whose liver was failing and they did not drink and had no stress in their lives at all so you just never know.

I did not get stressed as a rule but redundancy takes its toll regardless of who you are or what job you do! I wonder if we don’t sometimes realize how stressed we are.

It makes sense now when I look back on it and it was not that long ago.

The thing that was interesting was the consultant pulling my curtain back and saying it was “as bad as it gets”. I remember saying “if 10 is bad like I’m dieing and 1 is not good where am I” and he said “8 and climbing”!

That was it!

I knew I would never drink again after that! Socially or otherwise. It was the quickest therapy I have ever had in my life.

It was a catalyst for change though and I do realize it was as close as it gets. I had literally “dodged a bullet” as my consultant quite rightly told me.

You quickly move onto what is next.

When I left the hospital I realized there was a big market for alcohol free 0.0 alcohol by volume and a big education really needed to happen. I also discovered that if the product was good people would make better choices.

It is actually backed up by University research I later found out.

This is when 00abv.com was started!

What happened when I was admitted to hospital

What was interesting was that because it was my liver and people presumed it was very heavy drinking I did get some prejudice although I should say my level of care was extraordinary.

It was the little things like being asked by reception “You must have been here before so how come you are no on file”.

I had not been in ever and they looked shocked. One dismissive emergency senior consultant who checked my chest for rashes (as that is one of the symptoms) showed a lack of empathy to say the least. Despite this most people were brilliant.

His deputy sat and talked to me what for seemed like hours and she said ” you have not been to hospital much have you?” I said once “when I cut my finger “albeit badly. We both laughed. She was great!

I was turning more yellow by the minute and I was admitted to stay in but got tested very quickly despite the fact they were unsure what the problem was. They thought at first cancer

Just shows you, the liver is sometimes not that obvious when it is failing.

 

Doctors pondered and so did I, would I live and did I need a will? Its funny what goes through your mind,

As my blood tests were taken it became clear it was certainly my liver and my stomach was drained, and boy was there a lot of fluid. At this point they were worried about any blood in the stomach and what they called “varices” which is inflamed veins really.

However, to put this into perspective, varices are more serious than that.

They can become very enlarged and it is the bit that connects the throat and stomach. It’s a key symptom of serious liver disease as I was to find out.

The things you learn when your life’s on the line.

So your normal blood circulation is being hampered by the scar tissue in the liver. If your veins rupture it can cause bleeding and that is very serious.

Like that’s it! Finite!

So I spent a few weeks on drips 24 hours a day and lots of careful care and attention until my jaundice (so what was causing me to go yellow was high bilirubin levels ) went down. Jaundice is when the liver is not processing the blood cells correctly in the body.

Eventually I was discharged with a heap of medication and assigned to out patients. I actually cried when I was discharged and plasma drips really helps even though I knew they could make me very ill but I was lucky.

No side effects at all so they kept on with the treatment.


My best recommendation for reducing your drinking is from Mark Tyrell and he was one of my early coaches. You can review the course by clicking the link below and use it anywhere that is safe to do so with your headphones. I give it a rating of 10/10.

I receive a small referral free which helps support the blog. If you purchase I would love to know what you got out of it I really would.

What is your health like now?

Actually it’s amazing what a real life focus can do. I am still an outpatient and they still check my bloods to measure the bilirubin mainly I think. Looking in the mirror and checking your eyes is still one of the best things you can do.

I would not do it every day though as it can drive you mad! Looking at yourself like that it’s just weird.

But having ignored the warnings I am always keen to cross-check.

My tests are generally two simple checks

  • Blood
  • Ultrasound scan of my liver.

I know many medical hospitals use different and in some cases more elaborate techniques but I am happy that they have it covered.

The best advice I can give is to make sure alcohol goes completely especially if you have cirrhosis of the liver or advance liver disease. It’s a killer and the reason I am so passionate about making it easier not to drink alcohol.

Yes we can define anyone as an alcoholic if they drink over the recommended amount but the reality is that is a lot of people and they just don’t realize they are doing it!

This vision of everyone in rehab is a slightly odd one as you are more than likely going to find them sitting with friends enjoying a social drink and not realizing two large glasses is in effect a bottle.

Labeling people who drink alcohol is hardly going to change them and in fact it can make it worse!

The other thing to watch and this was a good call on my consultant’s behalf is that no matter what level of drinking you are at if you cut one habit out you often replace it with another!

For me it becomes ice cream and lollies.

Now my brilliant dietitian said thankfully I was just having a dessert and was very normal but it is easy to fall into the trap of replacing one lesser evil with another.

My medicine is now near to nothing apart from the tablets to protect my stomach from excess acid which can affect further varices complications. They are now fine thank-goodness.

I have been lucky on that front. You may also get a camera job down your throat to look at your stomach.

Always a good idea as internal bleeding can kill us and quickly!

So I am generally in a good place

  • Regular check -ups
  • No swelling
  • Still tired at times
  • I remain and glad to be and outpatient so they can keep an eye on me
  • Make sure your bloods get checked
  • Ask lots of questions
  • Be on time for your scan if you are invited to get on
  • You local doctor’s surgery can be a great support or they certainly were in my case.

 

What does the future hold?

Who knows and I have never really asked the direct question but I am lucky that I am not on a transplant list but neither should anyone depend on it. Its a complicated process itself.

I guess my life could be reduced but hopefully fingers crossed I get to live as full a life as is possible given that we only have one liver.

I suppose it is one of the reasons why I am so passionate about alcohol free choices.

I am not really a beer nerd in the nicest possible way, so my interest in zero drink comes from you having more choice and being made aware of the effect social drinking can have.

Even though I hate saying it alcohol is a poison and yes it has its social benefits but we should never forget that it can ruin lives.

I was hardly ever drunk but I know some people very often are and that can lead to everything from non liver health issues, problems at work, or relationship issues.

My bet however is that you are probably like me an average drinker who one-one would bat an eyelid at. That was me!

One thing to mention though as it is your liver, not your heart or some other awful disease you will come across prejudice. Prejudice if you drink and prejudice if you don’t. It is really is confusing.

People automatically presume you are a “so-called alcoholic” even if you are not. People jump to conclusions.

My best approach is to confront it heads on and then people have nowhere to go with it as they themselves down their 3rd or 4th drink !

At the end of the day yes you are living on a knife-edge and that is living with liver disease the awful truth. But you can make changes whatever level your liver disease is at.

You may not get back to how you were but life can go on and I am a testimony to that but I do realize that some people are not so lucky and go past the point of no return as I nearly did.

All I can do is stay positive as it counts for a lot.

For external resources you can find my review of two things that really helped me over and above medical care. The Liver Trust here in the UK and Health Unlocked and their forum which is worldwide.

Let me know if they help you.

Tell me what you think?

I would love to know what you think about living with liver disease the awful truth which in most cases can be prevented. Even as a social drinker I was naive. Leave your comments below and I always comment.

 

4 thoughts on “Living with liver disease”

  1. Living with liver diseases is not as easy as it has been said of course you made mention of some symptoms that prompt you to go for check and not much was said in what cause it. How can one with liver disease put away the fear or feeling he will die soon? Again does mean taking more alcohol will lead to liver disease? I believe regular visit to the hospital is necessary for a better health. Thank you for the post.

    Reply
    • Hey thanks for your comment its is really appreciated. I am sorry if it was not clear on what caused liver diease in my case which was a mix of alcohol, stress and genetics. However liver disease generally can be caused by many issues sometimes not related to alcohol at all. 

      What is clear though if you have liver disease to the extent I have it you cannot drink ever again so its a lifestyle change mainly and that won’t change any damge but it could prevent more being done. 

      The death thing is interesting, I guess it a personal journey really. So for me it was 48 hours then years and now I choose to live a positive life as I believe that can really help. As you say every person’s journey is different. 

      I guess I want to be hopeful for people rather than very downbeat  as do believe living a full life is possible with care. 

      I am so with you on making sure you access all the medical resources. I am very thankful for that. Thanks so much for reading Living with Liver Disease the awful truth. It is really appreciated. All the very best, Phil

      Reply
  2. I do not know anyone that I know who has liver disease. The closest is my mother-in-law whom I have never got to meet where she died of liver cancer. But I’m sure she never drink alcohol so it must have been stress or genetics. Stress is probably what caused it for her. She has lived a tough life trying to earn a living for her family together with my father-in-law. My wife to this day, still mourns for her on her anniversary even though it has been more than a decade.

    In my opinion, stress can be the greatest cause of diseases, other than alcohol. By the way, reading this makes me wonder would a non-alcoholic beer like Heineken 0.0 sounds interesting at all for an ex-drinker looking for a replacement? 

    Reply
    • Hi Richard, firstly I am sorry for your loss that is hard and thanks for sharing it. These comments really add value here. 

      Any alcohol free beer can be a good replacement to an alcohol option including Heineken 0.0 although it is not my first choice. There is one caveat though in that if the individual has had a severe drinking problem in the past even an alcohol free beer can cause an issue, as it creates a trigger and is known in some people to get them back on alcohol again. Only that individual can know if that is an option / possibilty. 

      I am not dependent so I enjoy the social aspect of alcohol free beers, wine and gin! I simply can’t touch alcohol so its pretty clear cut for me.

      These brands are often scorned by some parts of the drink therapy community but actually in reality they provide a well needed  alternative to many people without any problems at all. They are also great for the wider public who just don’t want to drink or drink less alcohol full stop. We will see even more brands arrive as younger people seem to be moving away from alcohol.

      If you have any more questions do let me know , my review of alcohol free beers is here if that helps. 

      Thanks so much for an interesting comment. All the best Phil

      Reply

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