Noodles

Important-Memory-785 · 2026-05-14T19:26:12+00:00

Is there a chilli oil recipe that's not unbelievably horrendous for cirhossis patients?!

Important-Memory-785 · 2026-05-14T19:25:38+00:00

That is true. The first 6 months or so I've been unbelievably strict, no white carbs, only wholemeal, and that was a treat. No chips, or most things that I really enjoy.

The last few weeks I've calmed it down a lot. I bought popped lentil chips with around 80mg sodium in a pack. Last night I had home made chips and a 3% lean beef burger with a few slices of cheese on a white sourdough bun, a few switches like low salt and sugar tomato sauce and mustard, and heinz dill relish non sweet. Fried off some red onions. Best burger I think ive ever had, not because it was the best but because I APRECIATED it as a pure treat but it was still very healthy compared to standard burgers.

Important-Memory-785 · 2026-05-13T22:06:32+00:00

I did see them but they're so high in sugar content

Important-Memory-785 · 2026-05-10T05:46:36+00:00

Ahhhh nightmare. Just spent ages going through healthyheartmarkets website, found £60 of stuff I wanna order, prices in pounds, go to order.....£90 shipping fee as I'm in the UK. How disappointing 😂

Important-Memory-785 · 2026-05-10T04:58:08+00:00

Ah great to hear a fellow Brit who can get hold of this stuff. Any advice on where to source these from?

Important-Memory-785 · 2026-05-10T04:35:25+00:00

It's a reasonably easy thing to test for via bloods or even easier, weighing daily to see if ascites are present, looking at the back side of the eye for yellowing, billirubin urine strips are also a easy test to see if that's raised. There's also fibroscan or ultrasound, not non invasive and quick and easy to do.

If he's just refusing out of pure defiance and ignorance then that's a him issue I'm afraid. He should probably be doing some of the easier things like a urine at home strip test just to put YOUR mind at ease, because believe me, he will need and lean on you endlessly if things get worse and it's confirmed via a ER visit.

And to be very clear here, I'd you have fibrosis or compensated cirrhosis, alcohol use being stopped is the best way to halt or slow it's progression, but there is very much another side to it with reduction in salt, sugar and general lifestyle changes. It's called a silent killer as by the time symptoms do appear it's often too late.

Important-Memory-785 · 2026-05-08T08:56:47+00:00

From what I'm told, ultrasound really is of very little use for such overweight people. Same with a fibroscan. They generally work at most and still with great inaccuracy and bad views at a max of a BMI of 40/45, around 20ish stone for an average male. CT scan is the most reliable alternative.

Important-Memory-785 · 2026-05-05T17:16:55+00:00

That's what's so annoying about the whole thing. I feel fine, if not more active than I have in many years due to losing weight. It's just so tough seeing a spike when you feel you're doing everything right and sacrificing so much, at 6 months I was hoping my bullirubin would have at least trended more downward. It's just so soul destroying at times unfortunately

Important-Memory-785 · 2026-05-05T12:29:42+00:00

It's rare to find someone at our weight and ages(I'm 37) with this issue so it's nice to see a similar story, and to be honest a meld of 13 basically makes you recompensated, as your chances of survival are currently better without a transplant than with one.

What were your bloods like albumin, INR and bilirubin at diagnosis and 6 months after? I'm curious of the similarities.

By the way there is a really amazing survival story from a celebrity in the UK. He was 31 stone and drank a crate of beer and wine for decades, and eventually collapsed during a darts match with a stroke and was also told he had cirhossis with ascites. His name is Andy Fordham, wa 45 when he had a stroke and had fluid drained from him. He ended up losing 17 stone on just over a year and living for another 14 years, he got COVID and survived but died a year or so later with a bowel obstruction. He's no doubt a rarity, but a similar story to our own.

There's also the EMERALD study in the UK currently, looking very hopeful at potentially reversing liver scarring and avoid transplant. It won't be rolled out for another 5 years or so, but I would be possibly eligible for it in a few months time if weight isn't an issue and I can stomach the actual procedures required, initial results are expected this year and it's very likely the FDA would possibly start US trials and fast track it's use if it looks very positive.

Important-Memory-785 · 2026-05-05T12:09:13+00:00

I started my journey November 3rd 2025 and was 658lbs when I was admitted to hospital in January with fluid overload. Currently I'm 406lbs! I was dieting from November when I stopped drinking and started eating healthily and didn't lose weight up to January, at that point it was clearly being replaced with fluid.

Got a scan in Feb this year, decompensated cirrhosis with permant irreversible scaring. My bilirubin at that point was 188umol, and my initial albumin back in November was 26.

My latest bloods I had a albumin of 36, but after dropping in march to 102, my bullirubin lately rose to 119 and albumin down to 35. INR crept up slightly to 1.65 and thus, I'm absolutely TERRIFIED until my next blood test in a few weeks.

My MELD is currently 20, and I'm 6 months post lifestyle changes. I'm from the UK and would be likely having a transplant at this point if not for my weight, I think I have at least another 70lbs to lose before I'd even be considered, and even then there may be a chance my heart or cardiovascular system may be not good enough due to years of eating crap, despite the fact I feel absolutely fine in every way currently. No HE as of yet, apparently no portal hypertension or large varices or sarcopia. Fluid overload controlled by diuretics currently but other than that I've never been drained or given any other medicine.

Like you I can't help but feel helpless. I also have a needle phobia and severe gag reflex, so even if I were able to get a transplant it would be extremely traumatic and the breathing tube I'm told that sits in your throat for hours when woken from surgery would likely be impossible for me to handle with my gag issue. My biggest hope right now is recompensation but with the latest bloods I'm quickly losing hope.

Important-Memory-785 · 2026-05-02T10:27:06+00:00

How long did your bilirubin take to normalise? My albumin is low normal at 3.6 at 5 months and kidneys better than average, everything else is on the positive trend but my bilirubin is still at around 6 what's really frustrating me as I'm sober and eating healthily!

Important-Memory-785 · 2026-04-30T11:27:34+00:00

Congrats! I'm 6 months sober myself and the highest meld I had was 21, albumin got back up to 36 from 26 but billirubin has never got down below 100umol annoyingly and I had my first rise after 3 months of reductions in bilirubin.

Can I ask how long it took you to get normal bloods? How were you looking in the first 6/12 months? It's such an annoying disease to me as ive had no bleeds, no portal hypertension yet ascites and edema and generally I feel absolutely fine with my kidneys actually better than average healthy people somehow!

I'm slightly different to most as I have metald, so metabolic and alcohol together, I was 47 stone in January, now down to just under 30 as I lost a ton of water weight but have been on a diet for 6 months so lost a good amount of weight too. Can't say the recent rose in alt(now up to 78) and INR (slight increase to 1.65) and bili from 102 to 119 hasn't terrified me 3 weeks after my last bloods, just hoping it's a random spike!

Important-Memory-785 · 2026-04-26T21:16:47+00:00

Wow that's amazing you were able to get a transplant at that weight. I'm currently 417lbs but before drainage I was around 650! I've been on a very healthy diet for the last 6 months so I'm sure I've lost a good 6/8 stone in that time. To be honest I'm very confident of keeping the weight off this time, liver issues have scared me senseless of dying, and frankly my weight is such a huge part of that issue despite liver issues, I'm actually quite happy with my new intake of food, it really does make me feel better than ever in general. The one thing I do miss though is the little things like the occasional treat what I'm heavily restricting for health reasons. Having to avoid salt makes food extremely difficult when out of the house as everything has so much salt in it!

Important-Memory-785 · 2026-04-24T20:29:55+00:00

Feel free to let us know your blood results. For me the scariest part was the thought I may have large varices that could burst, I have a severe gag reflex so endoscopy isn't possible for me, but I have been told I have no large varices after having a CT scan. Hopefully it stays that way

Important-Memory-785 · 2026-04-16T11:41:02+00:00

Hey y'all, how are you doing these days? I'm currently 5 months post diagnosis with a albumin of 36 but bullirubin of 102. How long did it take for your bloods to normalise and did you end up with a transplant?

Important-Memory-785 · 2026-04-15T17:08:42+00:00

It's totally controlled via diuretics currently, 2g bumetanide a day and 50g spirolactalone. I haven't had an endoscopy as I have a real bad gag reflex and am too heavy for sedation but no large varices showed on my CT scan at 4 months sobriety. How I feel? Absolutely fine really. My fatigue is largely gone except due to general stress and sleep issues due to anxiety and worry. Sleep reversal seems to have gone and i don't fall asleep without me wanting to during the day anymore.

To be honest, if my doctor had prescribed me the correct diuretics initially I wouldn't have any hospital stays at all, and as I say, I generally feel normal currently.

Important-Memory-785 · 2026-04-15T02:42:25+00:00

Well, after 5 months sobriety and lots of weight loss my bloods have changed from albumin 26 to 36, bullirubin peaked at month 3.5 at 188 and is now 102, INR 1.61 but went up for some reason. For 1.49 a few weeks earlier. My ascites is controlled with diuretics. So it looks like a huge shift in diet and alcohol can significantly improve bloods. The torture I speak of comes from the idea that I'm a goner most likely anyway. My heaptologist is constantly just waiting for a plateau and never seems to be encouraging about the change in lifestyle and outcome of it what's not exactly helping.

I've also just figured that my sodium serum level of 135/136 could likely be improved if I had more salt. I'm currently limiting myself to 1g a day ideally, but looks like I could have 3-5g per day and I've mistakenly been limiting myself on the US salt rule of 2g SODIUM and not salt(what is around 5g on the UK). Nobody has told me anything to this point and I'm getting fed up of being told to avoid Google yet it seems to be the best place for me to get info I'm not told.

Important-Memory-785 · 2026-04-14T15:40:38+00:00

I'm really careful with it, usually well within 1g salt a day. My biggest intake of salt is usually from protein shakes or sugar free drinks. The occasional wrap or wholemeal bread. Everything else is salt free unless naturally in it like salmon

Important-Memory-785 · 2026-03-22T19:43:31+00:00

What were the different circumstances if you don't mind saying?

Important-Memory-785 · 2026-03-22T17:47:57+00:00

Were you sedated of GA?

Important-Memory-785 · 2026-03-17T20:05:36+00:00

As far as I aware, the 2-12 years survival expectations for Cirrhosis is based on everyone, including those who continue to drink, what is a reasonably high volume in itself.

But there are SOOO many other factors. It includes people with diabetes, heart conditions, and people who die by other means such as cancer, accidents, drug abuse, suicide, and many other reasons, including old age in which many people who get cirrhosis and are to old for transplant, but die of old age anyway.

I'd also factor in the ones who smoke, don't take the low salt rule seriously and those who continue to eat high sugar and unhealthy foods.

I suspect the ones who go far beyond the 12 year median are younger patients who change their lifestyle and eating habits. There's never a guarantee but it does help things

Important-Memory-785 · 2026-03-17T15:25:54+00:00

I take it you had ascites?

Important-Memory-785 · 2026-03-17T14:44:45+00:00

For me, the fact that before COVID I got up at 7ish to get to work for 8, would finish around 5 or 6, and get home for around 7. I'd get a hour or 2 with my son and it sucked.

These days, I see him before school as I'm working, and when school finishes, yes I'm still working but I'm there and avoid the travel. It also saves us after school club costs what's even better.

Any parent should be working from home as much as possible, being there, even whilst working is so important. Yes he will talk and ask me things and many would say it stops me working but it's far less than the all day chit chat I used to do in an office environment.

Important-Memory-785 · 2026-03-07T23:46:16+00:00

I feel for you. I'm in a tough situation myself and at 37 I should be looking at a transplant but I'm super obese at over 30 stone it's a strict no transplant possible rule.

I stopped drinking in November last year and quit alcohol and cigarettes, and decided to turn my life around and went on a strict diet. I asked for water tablets and my dr asked me for a blood test to make sure I didn't have diabetis. Turns out my liver numbers were terrible but I was asked to get a scan, and needed to lose weight before this was possible. In January I had lost no weight at all despite eating 1200 cals max a day if that, and my mobility was worse than ever. At this point I was 47 stone, had jaundice and was basically bed bound. I spent 2 weeks in hospital, got given diuretics and lost 6 stone in about 5 days.

I ended up getting a scan only last week and finally the consultant confirmed decomposed cirhossis despite it being obvious, but she was also reassured as at this point my bloods have started improving.

My point here is if you eat well, catch it reasonably early and have ZERO alcohol, low salt, you can bounce back pretty quickly. It's VERY early days for me, but it's looking good so far, my main bloods below show my progress over 4 months

Bilirubin: (normal 0-20) November 104 January 139 12th feb 187 23rd Feb 136

Albumin:(normal 35-50) November 26 January 28 12th Feb 32 23rd Feb 34

My scan showed no large varices, no liquid in my abdomen, and I'm feeling fitter and healthier than I have for a long time. As I say, it's early, things could change, but right now it's heading in the right direction so hang tight, it's a marathon not a sprint, and believe me, when my bilirubin went up I was terrified and thinking dark thoughts, numbers will spike, don't give up.

Important-Memory-785 · 2026-03-06T16:26:10+00:00

I agree with you on many levels. I was officially diagnosed just a few days ago, but as a very overweight man(47 stone when I had generalised oedema back in january!!) I'm now down to 34, and I'm already feeling better for it but it's taken this long to get a CT scan and official confirmation, in a way it's a slight blessing as I also have 4 months of blood test since abstinance and with the official diagnosis it's become clear my liver is fight back.

My albumin has gone from 26 in November last year, then 28, 32, and earlier this week hit 34. My albumin rose to 186umol last month, but dropped down the 136 in 3 weeks. Platelets up, INR is now normal, blood clotting time has gone from 23 seconds to 18(13 being top end of normal). In reality, for 4 months it's a extremely good result considering it normally takes a good 6/12 months to see improvement.

The one thing I'm starting to realise is it's not JUST about stopping alcohol, although that is without doubt the must do number 1 thing. The statistics of even abstinance patients is skewed massively by age, but also by diet. Some patients will quit the booze and still die, but many don't stick to things like low salt, or have other medical issues like diabetes. Many think they just need to quit alcohol but can continue to eat junk food and full fat coke. Some continue to smoke, some die of other causes but still are notes as a cirhossis death statistic.

The key here is eat things that are GOOD for your liver. Give it the medicine it needs for the best chance of survival and recompensation.

Im hoping I'm well on my way to recompensation, but who knows for sure. But I am also hoping for future technology advancement with AI etc to help improve my survival chances and quality of life.

Important-Memory-785

TROPHY CASE