Hi, I was diagnosed with compensated cirrhosis around 10 months ago. I have since done a resus trial/ study to reduce scarring. I had a biopsy at the end of the trial( sep) and it was showing roughly the same but just had 6 month appt with my liver consultant and she said...my bloods are about back to normal and the last biopsy is showing very faint signs of scarring and not even sure if it is cirrhosis anymore? She explained she will be keeping my 6 monthly appts as treating me as a cirrhosis patient would be the safest option and to carry on what I'm doing. I stopped drinking immediately as I was told about the cirrhosis and have changed my eating habits massively, also trying to do more exercise. What I'm trying to get at is is it really reversible or maybe it was never there to start with? She explained they couldn't have caught it any earlier which is good and hopefully its not as bad as 1st thought
Confused: Hi, I was diagnosed with... - British Liver Trust
Confused
Hi Pete, interesting. What type of liver disease / cirrhosis was initially diagnosed?
Thanks!
Hi, I was told it was 1st due to fatty liver on scans I had in hospital, then it flagged up again due to the drinking last time so I guess it was due to alcohol and non alcohol? As you probably know...they don't tell you a lot but just surprising what I was told this morning from the consultant
Hi Pete,I have recently had a very similar experience!
Diagnosed with cirrhosis in January (previously fatty liver diagnosis several years ago)
Stopped drinking immediately. Improved my diet massively.
Recent US scan showing big improvement. Consultant says Fibroscan in 6 months and possible discharge!! I could hardly believe it!!
Best wishes
Kaz🐈⬛❤️
That's great news, we'll done. What sort of stuff you eating? I've just try to eat plenty of fruit and the worst veg out there lol Brussels, cabbage, broccoli, kale, cauliflower. Its always the worse bits that are the best! Chicken and fish through the week. I just don't like the idea of not getting checked over for another 6 months but my consultant has booked me in for a mri so will keep you posted.
Hi !Much the same as you!
Porridge for breakfast (add cold milled flaxseed,chia seeds,sunflower and pumpkin seeds and blueberries) yummy!
Chicken, fish, with salad (dressed with extra virgin olive oil and apple cider vinegar)
Clementines, apples, grapes,bananas.
Yogurt.
Seeded bread
I've never felt better!
(Apart from degenerative disc disease and 2 frozen shoulders!!)
Onwards and upwards!
Take care 🙂
Kaz🐈⬛❤️
Well done and keep on what your doing. I keep meaning to add seeds into my breakfast. May aswell go buy some today...can't make it taste any worse lol 😂 I have a bowl of granola, low-fat Greek yoghurt, and loads of mix berries. I've always been a fry up guy working on building sites all my life so takes some changing!
😃 I still have the odd plate of bacon and eggs (usually on a Saturday or Sunday morning!) I think it tastes even better now!I just feel more in control of my life in general, no hangovers, clear minded. It just feels right (as I'm not getting any younger!) to change it up 😊
Kaz🐈⬛❤️
I know exactly what you mean. I was never really sober enough to get hangovers but I do feel better. I'm like that with steak once every couple of weeks as red meat is really a NO NO isn't it. I got tricked into looking on the Internet for diets with cirrhosis and basically says...you can't eat nothing looool told my consultant yesterday and stuff I seen like only eat the egg whites and not the yolk etc...Doctor basically said, dont read Google 😂 everything in proportion
🤣🤣
About the seeds…..lol
I just been to aldi as I needed a few bits anyway like 1 of these fake Yankee candles they do lol and I also took your advise and bought a bag of mixed seeds looool
I am pretty sure that with a cirrhosis diagnosis, lifetime monitoring is required by NHS guidance rather than discharge ? Especially 6 monthly US scans to check for Hepatocellular Carcinoma. I would not want to be 'discharged' from my hepatology care TBH
Sorry, I've not been discharged. The consultant said they will keep on treating me as a cirrhosis patient just to be on the safe side and keep on having the 6 monthly appts etc...but she just confused so I said "is there a chance it's not cirrhosis then? She said true, but let's just say you have to be on the safe side"
That reply was to KazKat Pete as she seemed to be suggesting they were considering discharging her.
Hi PeteI was diagnosed with cirrhosis 8 years ago now. It went straight to that when I had a fibroscan, after my initial assessment. Nothing like heavy duty stuff straight away is there?
It was interesting news considering the year before I had an incomplete spinal cord injury, following a compression two years before that. I also have high cholesterol and high blood pressure.
My cirrhosis was linked to NAFLD. It took some time to accept, but I have tried to be careful over my eating and tried to exercise as best I can. Trying to keep a positive attitude and occupied is also important, but not easy. Avoiding alcohol and lots of fats and excess carbs is really important. I'm still working on the weight, but it is going down slowly. Drinking sensible fluids is also important. I never have been able to drink coffee, but that is apparently good in moderation.
Basically that is all you can do, and if it does improve you know from the improvements you've made to keep up the good work. If it doesn't then you know you still are be proactive.
I'm just waiting on the results from my latest ultrasound.
Fingers crossed for you and best of luck.
Gill
Thank you Gill, sounds like your doing really well. I also seen coffee was good, around 3 cups per day. I aswell don't really drink coffee but I gave a ginger, lemon, honey, tumaric, black pepper and orange drink every morning and convinced myself that's what's making it better lol its just this aching pain I keep getting but it's been on/off for years but I keep getting told by the doctors it's nothing but the alcohol abuse. Now they think it could be a stone so we shall soon fing out 👍
Hi PeteI had GERD type symptoms since my late 20's. I was told stress was the issue. I couldn't drink alcohol from about the age of about 23, it caused me breathing issues, and as I kind of like breathing, I wasn't keen on the alternative. I'm now 65. Hence NAFLD. The symptoms reduced the more careful I am with what I eat.
I hope they find out what it is for you soon and they sort it for you. Pain might remind us we are alive but I can think of more fun things than that to tell me I'm alive, like a cuddle with my hubby, time with the kids and positively beating the odds.
Take care
Gill
So you havnt drank since you was 23, your 65 now and still battling it?! That's some going. All we can do is try ay, keep it up and keep in touch x
Hi I treated the drink as 1 day at a time. It affected my sinuses so I had no option. I can't wear perfume with alcohol base for the same reason. It was hard to start with, but, I was lucky, I enjoyed a drink but I also enjoyed soft drinks. The hardest part was in groups when alcohol had relaxed them and they told stupid jokes!
I'm having to treat sweet food the same way, I used to love them.
It does get a lot easier eventually and your taste buds do seem to change and adapt.
I would never survive permanently without my cup of tea though.
Take care and remember to say well done to yourself each day you do well. If you hit problems try and work out what the triggers were and how to handle them differently. I still try to do that with sweet food. Not drinking has just become a way of life.
Gill
That's right, its just knowing what to eat. I've not heard of that problem before with perfume etc...only reason I couldn't touch a drop and be carful round aftershaves/ some foods as I was on them disulfiram tablets, antibuse. Its been 10 months now but obviously still think about drink(especially in the summer) but it can't be done! Most of what I eat is healthy, say I have something like fish or chicken...the sauce might not be the best but I do have loads of green veg with everything and plenty of fruit
Congratulations! Your story is not any kind of miracle! Many liver doctors have patients on their books for over 20 years living normal lives because they stopped aggravating it with bad food, alcohol, smoking, etc. Keep at it and you can live a normal life, but please don't try to get away with "just this once" - that won't end well!
Congratulations again! Stay in touch!
Thank you, I sort of guessed by cutting the alcohol out and sorting my diet out would improve things, I was just shocked how quickly it turned around for the best as the appt yesterday was only my 1st proper 6 month review so I'm really pleased how it went. Like you said...i need to keep at it, otherwise its all a waste of time. I could do with exercising a bit more and getting my weight under control. Waiting for a new gym to open atm down the road but I get plenty of walking in daily. Thanks for the reply, and take care 👍
Cutting alcohol out caused a quick turnaround for me as well. I'm 9 months since diagnosis where I was rushed to the hospital. Throwing up blood and dark stools. Spent 6 days in intensive care and in an induced coma. Went through seizures and had ascites and varices. The doctors said I was heading for multiple organ failure. 4 varices have since been banded.
Fast forward 9 months later. I was given no dietary restrictions other than common sense. It was just stressed to not drink or I'd die. Now my bloodwork looks normal. I feel fantastic and like nothing ever happened. The ultrasounds still show cirrhosis but my doc said my MELD score is at 6 and far too healthy for a transplant. All I'm supposed to do is check in every 6 months and be monitored with ultrasounds and he'd like to do another endoscopy to check on the bands at some point. Other than that I'm living a completely normal life after being on death's door a few months ago. Still trying to wrap my head around the turnaround and thankful for it.
Hi, that's so good. I'm pleased for you 👍 well done! The problem is, they never tell you anything about what's going on, what your supposed to eat? Exercise? How much? It's like there just trying to rub it in and make things worse! That's amazing how you have turned that round in a short time. What's a typical day eating for you can I ask. I have a idea what I'm doing but any other info would be appreciated. I've had no symptoms at all, ever. Apart from when I tried to stop on my own, I was rattling and ended up going into hospital for around 10 days till my fluids were right again. I have the odd aching pain in my right side for months/years...on and off and they keep sending me for scans which nothing is ever showing. The last appt I had with the consultant Monday, she said it might be a Stone causing the aching so has booked me in for another scan and maybe endoscopy to remove it. It's just funny how they hate to accept its getting better/reversed lol she even said its hardly noticeable now and might not even be cirrhosis? When I questioned that, she didn't know what to say
My diet (except for the alcohol) was generally pretty good.
For today:
Breakfast: Container of Oikos yogurt, Can of albacore tuna. Plain bagel.
Lunch: Grilled rotisserie chicken sandwich on wheat toast, an apple, Salad with raw spinach topped with strawberries, bag of chips and a diet coke.
Dinner: Flatbred pepperoni pizza. Late snack: Smoothie with yogurt, kale, spinach, strawberries, blueberries.
I limit the bad stuff, but if I want it I have it. Fried food, red meat, cookies, ice cream? Sure thing, but not all the time. I was never told anything other than to be "sensible" like anyone else diet wise. Even though I have cut out alcohol completely I do enjoy a bottle of Heineken 0.0 alcohol beer now and then.
Exercise wise is just walking although I can do almost anything. I'm at 5' 11" 165 lbs (age 55 M)). Same weight as before the diagnosis. I look fit and a lot of that has to do with the ascites down to trace amounts. I looked like I was pregnant before everything happened.
What I don't get is how I can have no symptoms after the bleeding and varices? I expected the worst after what I went through initially.
I totally get where you are coming from about them not wanting to acknowledge progress too much or even reversal. I think they don't want patients reverting back to old behaviors. In my case while things look very good he reminds me the ultrasounds still show cirrhosis and that "its not going away"
Well just keep doing what your doing, I don't eat the good stuff 100% of the time but try to include it daily. I get that they don't want anyone going back to the old ways but that's no need to literally lie to you and basically say the only way is down! They don't like the idea of being wrong or defeated that's all it is
This is fantastic CaptLou! I had a meld of 6 when first diagnosed as well. Went to 8 then 9 and last one was 7. From what the the GI doc said 6 is what many non cirrhosis patients have. It means our livers our functioning normally but we still have cirrhosis. It’s quite confusing to me. It’s almost like the specialists speak to us in riddles. 😂
G.
I hear ya on that. And congrats on having your MELD down in that category. I've heard it fluctuates some but that seems like very good news. Mine has only been tested once. I know MELD isn't the be all indicator but its "something".
Well done that is really great news Pete. I hope this trial is successful and it is rolled out widely.
Hello. Sounds like a great turnaround! I'm very pleased for you. I just wanted to ask you about the scarring part. So they told you that the scarring is barely there now? And I imagine that if you had been diagnosed with cirrhosis the scarring would have been fairly extensive at that time? Being able to reverse the scarring is one of my biggest questions and the answer from doctors always seems to be 'no'. But when you hear of people's experiences sometimes it's yes. Which is a much better answer 
Hi, there was very slight scaring ar the start and was told it looks like cirrhosis is forming, then now the consultant is saying there is only slight scaring still which leads to cirrhosis. That's when I said so I don't definitely have cirrhosis 100% and she said no, but you probably have, but we couldn't have caught it any earlier buy the look of it. So I don't think she was saying the scaring has gone down but it was never really there enough in the 1st place. I have heard of cirrhosis completely getting reversed though but very rare. The doctors will just say a straight NO which isn't right on anyone's part
Hi, yes I've also seen many stories about it getting reversed like you say, just remove the underlying course. The medical trial I took part in for 6 months was to try and reduce the scaring. The results came back that it was about the same which was hardly any scaring. So I don't know where there going wrong? Lol
After talking to several gi specialists, hepatologist and almost worrying myself to death by reading everything in med journals (which I don’t recommend) some seem more optimistic about reversal than others. I can almost bet that if each of us saw 5 different hepatologists at least one of them would say it’s possible. I honestly think the liver is just still a mystery as is our body. If you all have nurse practitioners you should become friendly with them and ask them their thoughts. They are typically far more empathetic and know patient medical records and be willing to be honest.
You know that mate, I've always thought it's all a mystery aswell. The doctors don't have a idea what's going on. I've seen the proof...scan after scan saying I might have it, then when confirmed it was apparently really bad and nothing could be done. To 9 months down the line and it's hardly noticeable/ not even sure if it's there but let's play it safe and just keep coming in every 6 months. You noticed how the nurses on here are quick to message the people posting on here that are new, and worried what to do? You don't see them replying to people who have just turned it round and about gone because they don't know what to say
Hi Peter, I stopped drinking alcohol a number of years ago but my liver function blood tests are still poor. I eat lots of fruit & only eat wholegrain seeded bread/ pasta/rice, but green veg doesn't agree too well. Do you have any pointers to eating plans I could buy? Dietician wasn't much h help & said "just eat healthy, damage is already done". Consultant not saying much either. Would do anything to try and reverse this.
Hi, I know exactly what you mean from doctors advice re: diet! They said to me basically eat whatever but cut the fry ups put. Luckily I seem to have cracked it after my last appt on Monday. I start every day with 2x ginger and lemon teabags in a mug, teaspoon of honey, half a fresh lemon and orange, half a teaspoon of tumaric and half a teaspoon of black pepper(chuck it all in a big mug, add boiling water and that's for starters) bowl of granola(been told its too high in sugar but it's worked for me) mixed berrys, red grapes, mixed seeds and low fat Greek yoghurt, tuna sandwich on seeded bread for lunch, with tomato and some celery. Tea...normally either chicken or fish with either new potato's loads of green veg (broccoli,cauliflower, Brussels, kale, spinach etc...) or salad with quinoa as its twice as much protein as rice. And normally a bowl of weetobix and milk before bed for a carb snack. Plenty of water through the day and try to get around half hour of exercise a day, even if it's a walk. Hope this helps a bit, its not the most exciting menu but it's done me big favours lol
Confused! 😕
Fibroscan and Biopsy Showing Wildly Different Results
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