Hi all, I am reaching out to anyone who is living a normal life with liver cirrhosis. I have been diagnosed with it, although I don't know the grade and its severity, I still have been living my life nervous and apprehensive. I just went through five varices banding and recuperating from it; it is quite painful.
Living with alcoholic liver cirrhosis? - British Liver Trust
Living with alcoholic liver cirrhosis?
I had been drinking most of my life off and on. My variceal bleed was a wake up call for me and I stopped drinking. I spent a few days in hospital and the bleed stopped by it's self. I didn't need any banding. However, my liver was so badly damaged, I went on to develop tumours on the liver. Two were at the exact right size and these were burnt off using the radiofrequency ablation technique. The other three tumours were at the time too small and I had to wait for these to grow bigger. When these little devil's start to grow, then a transplant is really needed.
I have been very fortunate along the way, the tumours turned out to be non-cancerous, and having had the right diagnosis and care by the wonderful staff at the QE in Birmingham. And also having a wonderful unselfish donor who saved my life.
Understanding why I drank in the first place has been a major step forward for me. A lot of the time there's a reason as to why we all drink in the first place. I now believe there are three main reasons.
1). Because we just like the taste.
2). For social reasons (calling in the pub after finishing work)
3). To self-medicate as a form of depression control, to lift the mood.
I believe that once the cause has been identified, then this needs to be treated along with the alcohol support. Treating the symptom without knowing the cause, in my opinion can be counterproductive. I can now look back, and realise that for me I've spent 40+ years of my life lost in a battle of mental persecution brought about by things that were not my own making or doing as a child. My liver donor has not only saved my physical life, but also mentally, has now set me free, as I now understand not only the cause, but the reason behind it too.
Thank you for your reply and I am very happy you had such great medical support. I totally understand the trying to find the reasons and often conclude with the taste of it and the sedation it brings.
I am sober now and feel very apprehensive to how my disease may progress because living in the USA ill, is not a good thing. I am blessed, however that my spouse is an NP in internal medicine and the monitoring and preventive care is underway.
Many thanks for your reply. Its a big shame your over there in the US, as I understand that you can't have a liver transplant if it's alcohol related, as the insurance companies view this as a self-inflicted condition.
I personally lived over there in the states for three years. Have lived in Alabama, Ohio, Missouri and West Virginia. I got to understand the American culture a bit and how peoples views and outlooks seem to change from state to state.
When I lived in Peebles OH, this was/is a dry state, but it did have a horrendous crystal meth problem. It seemed like the whole community was hooked on the stuff. Sadly crystal meth can cause liver damage too, so these people are going to most likely have problems in the future too. My last year was spent living in Patton MO, This was a wet state and yet there was hardly any crystal meth. Mind you, everywhere I went, everyone seemed to smoke cannabis.
As you'll most likely know the liver performs over 500 different functions. If any of these genes have become damaged then other symptoms may start to show. I developed type 2 diabetes. I used to become so frustrated, as only a hepatologist would understand, but a diabetes nurse wouldn't. I had three different diabetes nurses all say the same thing. "Oh it's your pancreas not producing enough insulin. I was never convinced this was the case, and did my own research. Here I read about a gene in the liver called the crtc2 switch gene. This gene controls sugar levels in the blood. If it becomes damaged, it doesn't switch off, and the liver continues to dump sugar into the blood. The liver can also become insulin resistant, and even though the poor pancreas is having to work overtime, this liver doesn't respond. It is believed that the insulin tells the crtc2 gene when to switch off. It's a shame that none of the diabetic nurses I spoke to understood any of this.
I am now just over 12-month post liver transplant, and my diabetes is very well under control and much improved. I no longer have to take insulin and there looking to take me off diabetic medication altogether over the next 12-months.
I have nothing but total respect for all medical professionals, but this story should hi-light the importance of up-to-date training as medical science is changing all the time.
Good luck to you metecal.
It's not true you can get a liver transplant in the United States, even if it's alcohol related because it is considered a disease, I had a friend who just received a liver transplant due to alcohol cirrhosis, United States is awesome. FYI
Many thanks for pointing that out to me Peppy.
I lived in the states for three years. I travelled around a lot and experienced life in a number of US states. West Virginia, Alabama, Ohio, Missouri, and Michigan to name but a few. As you'll appreciate each state is run differently and I found that in Ohio and parts of Alabama for example they had a number of dry alcohol free townships. Here the sale of alcohol was banned, but people could always cross over the state line and bring it back home. These towns (especially in Ohio), also suffered with terrible crystal meth problems.
I found that the attitude towards alcohol abuse seemed to differ from state to state. I have come across this article which highlights the dilemma: drugabuse.com/should-people...
The six month dry rule seems to apply to people in the states and seems accepted pretty much worldwide. When assessing whether a person should go on the transplant list, maybe the rules are a lot stricter over there. I suppose I have been given false information in the past when speaking with those Americans who talk about their Alcohol-related liver condition. Here, I suspect that when they say that they can’t have a transplant because they have ALD, what they are really saying is that they’ve been turned down for a transplant as it was felt that this donated liver would just be abused. This is where the miss information can be confused with the truth.
Thank you for pointing me in the right direction.
You're most welcome Richard64, I have alcohol cirrhosis since 2015, been clean since then and stop smoking and I'm not on transplant list, I'm doing what I'm told to do by my doctors. I live in Louisiana.
Many people always saying things they don't know to be true. I read things on these sites all the time about Americans can't have this or that, these rumors are usually spread by people that either lived here and for some reason couldn't stay, therefore they have hate for the country and say things they don't know to be true. Peppy. you are right America is great and if it wasn't, why do people leave their country and come here
Thanks sophia1980, I love my United States
You just have to live the life your illness lets you live.
Everyone is an individual where this illness is concerned and their symptoms and presentation differ from person to person. Some people remain fairly asymptomatic whereas as the condition progresses it might bring along symptoms that hamper a 'normal' life.
My hubby has cirrhosis due to auto-immune hepatitis and has had the diagnosis since April 2012. After having all his varices dealt with (42 bands) over the space of two years he remains free of the very advanced signs of cirrhosis (thankfully no ascites, jaundice, itching etc.) but does have chronic fatigue, major sleep disruption, signs of mild hepatic encephalopathy with confusion, memory issues, difficulty with speech on occasion, difficulty following instructions etc.
On his good days he makes the most of it with walks and trips out and caravan holidays but has to recognise when his body has had enough and has to rest including day time sleep. He can't work now as he used to have a very physical job as a welder in heavy engineering and he hasn't the capacity to learn new things or the energy or concentration to do so. He no longer drives due to his chronic fatigue and concentration issues.
He has to eat a diet to keep him fuelled plus watches the amount of salt, sugar and processed foods he takes in.
You have to adapt to having this illness, quit the booze 100% because should the need for transplant arise you will need to prove you are abstinent and capable of remaining so for life. The British Liver Trust has an excellent page on living with liver disease which you might find helpful. britishlivertrust.org.uk/li...
Thanks, sometimes I feel it's too late and wish I would have been more productive sooner.
You find yourself with rules now all involved with Cirrhosis. The medications, diet, the constant stress of what is next like Ascites, Hepatic Encephalopathy or the I got a pain is it the kidney , the spleen, Heart on and on with each pain comes self diagnosing. It’s the fatigue and everything surrounding with me that is most frustrating. I take antihistamine to help relax and sleep also to get up and get busy. It’s very understandable to just sit and wait, there are days I don’t want to get out of bed if I do it’s to the chair. With the medications I can get out I don’t get far away from home just yet without someone with me.but I bought me a Harley and I’ll ride it twice to three times a week for about a hour or so. Just get to living and leave the rest to the doctors do something
Hi there I also have cirrhosis of the liver for 2yrs now! My symptoms are what you called comprised! My symptoms don’t show! I will have to eventually have a transplant but right now my drs are concerned with me receiving a kidney transplant! My cirrhosis has helped my kidney disease turn into failure which I’m on dialysis now! So I would becareful and make sure your doctors also check your kidney function!! As far as I’ve been told there is no grade to cirrhosis of the liver! When cirrhosis developed its liver failure! No matter what! I do wish you luck and hope to follow your journey
Thank you for our reply and helpful information. I often get very nervous about the hospital bills and the research I have been doing in regards to a liver transplant appear to be very expensive. I know that living in the USA, which is where I live as well, medicine is not affordable. How did you get in touch with a liver transplant organization? Cost? etc?.
No my cirrhosis was caused by NASH which is the non alcoholic cirrhosis! I was referred to the transplant team I got! But I do believe trans plant cost over $250,000
Your right about grades and once you have reached Cirrhosis you got it. But there are 4 stages its what makes up the difference between having either compensated Cirrhosis or decompensated Cirrhosis, with compensated cirrhosis you do not have symptoms related to their cirrhosis, whereas those with decompensated cirrhosis have symptomatic complications related to cirrhosis (jaundice, ascites, variceal hemorrhage, or hepatic encephalopathy. So the Four stages of Cirrhosis , The course of the disease progresses as follows: stage 1 (either no symptoms or few symptoms such as fatigue and abdominal swelling), stage 2 (hardening of liver tissue), stage 3 (damage to liver functioning), stage 4 (terminal). There is No way to say when the stages will change or a time frame for each stage. Making this life expectancy judgment is best determined by a doctor specializing in hepatic disease.
I knew all of that! Trust me I’ve been through the ringer with it.
My husband is an NP specializing in internal medicine. I assist him ad see a lot of unfortunate people who have different stages of cirrhosis. I have seen it all and that is why it scares me to imagine when it will progress to that stage in my case. Since I don't know any of this patients I really can not ask them of their trajectory through the development of their disease, that is why I am so glad there is a site like this where we all can share our own experiences.
Given my blood results and symptoms, he tells me a good diet, and of course, staying sober, can delay any complications. I hope he is just not being nice, but it helps to be reassure. I also found this useful site, check it out: patientslikeme.com/users/si...
Hard to say whats normal, like to think l am, my personality has changed, my brain is hopeless, unable to walk in a straight line, talk like an alien on drugs, slightest knock and I bruise a cut and I bleed like theres no tomorro body pains all over, I could go on but thats my normal.good luck.
Hi did right a long reply but it's gone into hyper space, this is a shorter version of my normality, utter crap.
Tried to submit twice this is a tester
It worked im through.lol.
As far as my latest diagnosis I have nafld and cirrhosis (diagnosis August 2017). I also have a spinal cord injury incomplete (3 years ago again August). I'm going to have an 11 month year, with July gaining extra days and September doing the same.
I have had to try and lose weight. I have had to up my fresh fruit and vegetables in my diet. I have had to slash the sugar, fats and reduce carbohydrates in the cereals and pasta to try and meet my exercise levels, which are not as high as they should be to really help my liver. I also tend not to have ready meals now due to the additions in them. I also watch the bottled drinks including water for the additives. Sleep is a bit of a problem but I'm getting used to my problems and the pattern is becoming more regular. From what I can gather good sleep patterns are important.
I get tired easily and so I have to regulate some exercise, some rest. If I mess up I have payback and have to rest. I do work part-time for a charity, but find I can't do the extra unpaid ones I used to give them.
My life post cirrhosis diagnosis, except for the eating more healthily and making more effort over trying to lose weight and trying to cut back on pain killers, hasn't changed much. The main thing it did was give me a wake-up call about still comfort eating post injury.
I know that life is going to get harder, but at the moment I'm living each day at a time. I'm lucky I didn't drink alcohol for a long-time so I haven't got to give that up. Trying to give up sweet things is hard so I give myself a couple of naughty days a week where I have a cake, cookie or desert.. But even then I'm really careful compared to how I was. Most days my luxury is fresh fruit and certainly no cream or any other topping.
All we can do is respect our liver from now on and help it as much as we can.
I'm fortunate I live in the UK and hope like anything that our government, irrespective of which party is in power, doesn't cause any more problems to our NHS.
Best of luck
"Hi all, I am reaching out to anyone who is living a normal life with liver cirrhosis. I have been diagnosed with it, although I don't know the grade and its severity, I still have been living my life nervous and apprehensive. I just went through five varices banding and recuperating from it; it is quite painful".
Thanks you all for your replies ( update)
I had an ultrasound yesterday 10/18/17 and according to the results, all of the liver functions are normal now, including the portal vain, no scaring, normal size and no bumps; just a minor indication of liver disease from the history of inflammation. However, during the peek of the inflammation, my stomach develop the varices and now my spleen appears to also have been affected by it---it its suspected the spleen is the culprit of my low platelets, and the inflammation damaged my spleen and caused the varices in my esophagus. To prevent stomach bleeding, I am undergoing a series of varices litigation with a GI specialist. My doctors say there is a good chance of fully recovering with some supplements, dieting, activities and of course, sobriety.
My doctors say there is a good chance of fully recovering with some supplements, .......... That is very good news
I have cirrhosis for 10 years and doing okay with few hiccups. All I have to say is quit drinking altogether, think very positive, be around positive ppl and watch your diet.
Update: after my scan on 10-18, the day after I had the most severe eruptions of my varices, almost lost consciousness, I gues I was celebrating too early the results.
I have cirrhosis foe 3 years and am o the transplant list
Normal life well....................
If you forget itching, lack of sleep, tiredness etc. I am living a normal as you can life
All you can is do your best and eat sensibility and see which things make you fell better
Each of us are different with the effects
Good Luck and Best Wishes