Hello all, first post here. Bit of a long story on how i got to where I am today, so i apologize in advance for the long post.
I came back from a trip in 2014 and a few days later, i fell severely ill. In fact, i have never recuperated from it. Initially, it looked like i had caught Hep B but multiple tests turned out negative. It was obvious my immune system was compromised based on the many symptoms i was having.
I had initially lost a lot of weight...one of the symptoms...but gradually started to put the weight back on, specifically in the gut area. Was losing muscle mass but started to feel more and more bloated. I'm a binge drinker and noticed that i could not tolerate drinking alcohol like i use to. Another symptom was pain in the liver area that would come and go. I obviously suspected a liver issue but my GP kept telling me that my blood test (GGT/ALT/AST and ALP) were fine...not to worry about it.
Now to be honest, this suited me fine initially as i did enjoy my binge drinking on Friday night with friends. But as time went by, i could see that my health was getting worse. Since i wasn't getting anywhere trying to see a liver specialist through my GP, I decided to pay to go to a private clinic and get a fibroscan done in September. The result came back with a diagnosis of stage 4 liver cirrhosis stage with severe steatosis.
Fibroscan result: 14.8 KPA, IQR/Med: 29%
I was devastated but not surprised, based on how i was feeling. I'm dealing with severe headaches, difficulty breathing, exhaustion, brain fog, swollen neck, metallic taste in the mouth, bladder pain and a bloated stomach. I also have a fungal infection that won't go away. Lost my appetite and regurgitate pretty much anything i eat.
I completely stopped drinking alcohol as of September and started a whole plant based food lifestyle. Gonna see what comes of that but got a feeling that i waited to long to get to this change. Can't dwell on it...it is what it is. Next step is an ultrasound on December 16th and then we will see. Hopefully my symptoms don't get any worse in the mean time. I'll provide my results when i get them.
Rocko
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ROCKO2231
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Rocko there are a few different categories of decompensated cirrhosis stage 4 I had the worst one. Wouldn't worry about your fibroscan results just to put you in the picture because my kpa was 70 the bloody machine only went up 75 kpa. Your CT scan is the most accurate.If you are not building up ascites fluid around the lower abdomen more than likely you can reverse your result and change down to compensated. You can have a relatively normal life but no alcohol again.
You are going to reduce a lot of salt intake. You definitely don't have to just live off greens. I was gob smacked when I changed dietitian through changing to a liver specialist hospital. When she said I was going to far with the health diet, meaning I wasn't eating enough protein and could eat up to 5% salt a day and shallow fried foods, glosture cheese, red Lester. First thing I did was fry an egg (not had a fried egg in months). I also know exactly what you are going through, so if you ever just need a chat... Or a laugh because you are having a bad day, feel free to ask.
Thanks for the advice Danny. I do not have any CT scan planned, only an ultrasound on December 16th. For what i can see online, CT scan seems more precise than ultrasound so i'll see if i can get that done as a follow up appointment. I have been chronically sick for such a long time that i do find it hard to stay positive. My daily symptoms (nauseous, stomach bloated, tightness in the neck, chronic headaches, joint and muscle pain, kidney pain) are getting worse...hard to forget that things aren't right. I also find it strange that I my chest is caving in...like i've lost all my upper muscle mass...feels like there's something else going on with me besides my liver problems.I've been reading up on this forum for a while now so i know many can relate and many are dealing with worse issues that i. Thanks again Danny.
Rocko I had a similar scenario with muscle mass. Your diet is so important with decompensated cirrhosis. Your liver steals muscle mass from the body and uses it as protein. (Please for the love of God stop Googling, anxiety wrapped up in a worried nut shell) my muscles were unrecognisable to myself. I had an appointment with a brilliant dietitian who recommended more protein in my diet. The supplement drink I have is a 3,2 kcal. (Brilliant) watching my muscles return. What you have to remember is your heart is a muscle the muscles around your lungs need to be healthy. You maybe able to isolate a few of these other problems just with the protein intake.
Hi Danny you really need to have a lot of protein in your diet. Try and get a dietitian appointment, it really is so helpful. In my case I was given supplements, fortisip compact and pro source jellies. I was told to eat full fat yoghurt, drink full fat milk as although you need fruit and veg protein is he most important. Also have snacks for during the night. I would often wake up and my body needed food.
Try and stay as fit as you can too. Every little helps🙏👍
I completely agree with you regarding the diet Danny, I had the same issue, I have cirrhosis and I’m still building muscle back up after 16 months sober, things would have improved quicker with a lot more protein in the diet. There is conflicting advice everywhere
Yes your liver will eat your own body to keep going. So I think of it like a steam engine that needs constant coal to keep working. The liver needs protein which can come in different forms of food. Sugars, meats, eggs, pasta, patatoes. My goal from the best dietitian ever was protein with every meal. Supplement drinks in-between meals. Making sure that you have something to eat before you go to sleep. Because your liver will steal your muscle mass while you are sleeping. X
Hi Danny been keeping an eye on posts on here,just to clarify as I seem it difficult to get a correct answer from consultant, GP useless,I had a CT scan and all it showed was a fatty liver,!!!,now after a major bleed last march I was told all of a sudden Id got stage 3-4 cirrhosis,since suffered a major infection in colon after 4 tumours removed,after a kpa of 41.6 ,so far I'm fully compensated no acites,no other issues,4 X scans,coarse echo,nothing else,don't get me wrong if he has messed up,!!!!, It seems to be in my favour,..don't know what to think,as been classed as an alcoholic,but drink has had no impact on my entire life only 3 years of divorce,which wasn't hectic really.but I have had an apology for the Dnar,he said he had ticked the wrong box,but not to be concerned about it.!!!!,P.s,not been bothered about drink for over 2 year,3 next January,life more normal now after hell of divorce.
Not so much an alcoholic probably hitting it whilst going through the divorce and suffering from other illnesses has all congregated together. Once cirrhosis occurs it cannot be repaired because it is scar tissue usually created from alcohol. You need to see if other conditions create cirrhosis because I don't think there are. (Not 💯) lower stage 4 and stage 3 can be changed or reduced dramatically with the correct diet, exercise and no alcohol at all. Please continue pushing your specialist and consultant for a direct cause because I'm not sure about tumors. I was in hospital with a young lad who had cirrhosis but as well as drinking he was addicted to ibuprofen which created little tumors all over his liver and sped up his decompensated stages dramatically even though he wasn't an alcoholic. I hope that helps good luck.Sometimes I had to stand up and say right I want a straight answer. What is going on with me? I had 1 to 3 years to live but they didn't tell me for the first 6 months. Don't lose your temper just ask for the truth.
P.s. fatty liver hides the amount of scarring you can see. I had to become healthier to get a clear picture to find out the worst. Just the knocking alone helps because you come to terms with it and then start fighting back. Did you have a CT scan where they pump a dye in the blood stream.
Hi thanks for reply,been at logger heads with consultant,both my admissions to hospital I had taken aspirin,for an underlying heart issue,been taking for 20 years,but he had dismissed that,I had a CT osopagus stomach bowel,think with dye,unsure,got trust involved,had meeting last week,just can't see from a diagnosis of cirrhosis to no symptoms really,other professionals seem confused,got an unprecedented apology,so I'm sure I will be fine,you take good care,I'm pretty sure I read somewhere your near Rotherham,?? Not to far from me if so.all the best.
If you ever need to chat mate I'm not too far. Seems as though you don't need an apology just a proper diagnosis.I think Katie or a phone call to British liver trust is in order. I can't get my head around what they are trying to diagnose. You have that much going on. Please don't hesitate to contact I'm off for a while do to this new liver and life I have been given.
You go easy mate,Ive had some great feedback on here,rang the liver trust up a few times,confronted consultant with all questions on two occasions,just keeps pushing for more scans,had three now,nothing major,oh,he failed to say last year I had gall stones,so a year in pain seems to have been why I have been in agony dropping the proverbial log,but all good now,my last clinic with him I confronted him with research as to suggest all my bleeds was caused by aspirin,without ppi drug,he dismissed it and basically accused me of having a drink because I was adamt it was justified that he looked in to it,he wouldn't and as for my manner asked for a GGT test,and said I can't give you a second opinion.it truly is a long story.but listen you take good care mate,after my divorce I was suicidal,, but now riding the waves of a good divorce settlement,my daughter said if I was truly addicted to alcohol surely after all the crap I've had I would be drinking,but I'm thankful they caught the cancer in 2019,of which I'm clear,but seems the after effects of infections has been overlooked,but like I say a bloody long story,You get 100% pal. I'm 99.9%.
Good to hear bud and good luck. I'm still smiling me, I only got home from hospital today and feeling amazing and In the mood for squashing some cirrhosis.
My fibroscan was 19.5 and was told I was borderline cirrhosis I went of the drink for 10 months but fell of the wagon a few times I'm lucky at the minute apart from a few niggling pains on my right side I'm compensated
Hi Rocko
That was not a long post, that was a perfect post, all the information people need to relate.
yes, you are right, it is what it is... and we each have to deal with it... but... IT is not always as bad as we fear. Lifestyle changes, exercise, diet and abstinence have been proven to increase our livers health. Plus at this time, there appears to be several exciting research projects into liver disease and they seem to be getting promising results.
people can live with liver disease for a long time and if you need to know anything, people like Danny have a wealth of experience and are always willing to help those of us in the same boat
Thanks for the kind words Dave. Been off the alcohol for a few months now, diet change, lifestyle change and my most recent blood test aren't that bad.....but symptom wise, i'm getting worse...discouraging...hanging in there. Rocko
What you need to eat depends on what stage of cirrhosis you're in. In early, compensated cirrhosis, if you are not losing muscle, a plant based diet works for many, especially if you add the fish (salmon). But if you are nauseaos and having infections, and you have bloating from fluid, it sounds as though you are decompensated. Your diet has to include at least some lean meats (chicken), fish and you can still eat the vegetables. Being decompensated is like being in free fall. All your body wants to do is to find stability again. Give it plenty of nourishment (the veggies, lean meats, whole grain carbs) and plenty of rest. Eat a peanut buttersandwich before you go to sleep, as a cirrhotic, decompensated liver burns so many calories at night that you wake up starving. During the night, the body literally starts to consume itself. Weigh yourself to keeo track.
Drink plenty of coffee, good strong, paper-filtered coffee, at least 3 cups a day. Walk a little if you can. But don't overdo. You'll get through this. Be patient with yourself and continue reaching out on this forum.
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