Success stories?

[Jowheeler84]

Do we have any other success stories of cirrhosis of the liver? Aside from transplant success? Functional medicine, etc?

[AyrshireK]

It's totally possible to turn a decompensated cirrhotic liver back to compensated (seen it in my hubbies case plus several other folks on here). A cirrhotic liver will never fully heal though. However, I don't get the relevance of your question when from all tests it would appear you don't have cirrhosis at all.

[Jowheeler84 in reply to AyrshireK]

I know all test are not conclusive so its still a bit challenging for me to process what I feel everyday as nothing liver related.(even more so after reading into the links you sent me) My gall bladder is functioning properly(overactive actually) pancreas appears to be in good condition per drs. Im just trying to do anything I can in the unknown space I occupy at the moment.

[Efky in reply to Jowheeler84]

Sorry i meant to say decompensated

[Efky in reply to AyrshireK]

That’s good news. Have you heard of cases that include reversal of ascites also? Which often occur at the beginning of the decongested phase.

[AyrshireK in reply to Efky]

Ascites can certainly be managed with diuretics and/or drains. Reducing salt intake too can reduce the frequency of ascites build up. My hubby has never had ascites (thankfully).

[Efky in reply to AyrshireK]

Thank you. I don’t know yet if I have ascites. But my stomach is swollen. But only small amount which is hard to detect.

[Efky in reply to AyrshireK]

You’ve been so helpful. I’ve read a few of your posts and was wandering if you know of cases where people with ascites due to Non-alcoholic liver ciirhosis have returned back to the compensated phase of ciirhosis because I know that in Alcoholic ciirhosis there have been cases. But I wasn’t sure about non-alcoholic ciirhosis.

[AyrshireK in reply to Efky]

Cirrhosis is cirrhosis regardless of cause so there is potential for all causes of liver disease to improve if you can tackle the underlying cause and prevent it from getting worse. My hubby has never had ascites but was first diagnosed with decompensated cirrhosis in April 2012 (bleeding from varices) - over the years his condition has stabilised and his is now compensated.

[Efky in reply to AyrshireK]

Thank you so much!! You have been so helpful. I’m glad to hear your husband is doing great. The story gives hope to others. All the best!

[Efky in reply to AyrshireK]

Sorry I meant to say decompensated phase

[deanw41 in reply to Efky]

I was 7st decompensated ten litres of ascites this time last year. Had it drained,no tablets,never came back. 9 1/2 months sober,12st muscle mass,feel really good!! Lucky I know,everyone is different!!!👍😊

[Efky in reply to deanw41]

That’s fantastic! Good to hear your feeling better. If I have ascites it’s a small volume because it wasn’t picked up on mri or ultrasound. But my stomach is more swollen than usual. Do you know of any cases of ascites going away in non-alcoholic ciirhosis?

[Tia2021 in reply to deanw41]

That is fantastic news

[Rockhopper1]

Interesting to say 'success' as I sort of think it depends on how you measure it.

I worked in a high profile role for many years and drinking was part of that culture. Weeks abroad in hotels on your own etc.

I'd always liked a drink and never really thought too much about how much I was drinking. Was made redundant in May last year and feeling low led to having my first drink earlier and earlier in the day.

Family get together early july when we were allowed and brother told me I didn't look at all well. I cut down, a very small bit, and then 2 weeks later was in A&E with excruciating abdominal pain. Admitted immediately and put onto a ward for tests etc. ALD was the diagnosis with the overriding message that the next drink could be my last.

Child Pugh score of B8 and on transplant list.

Discharge 2 weeks later with severe ascites and odema and placed on strict diet. Esp no salt. Lots of different meds.

Haven't touched a drink since.

Ascites drain was a regular 3 weekly thing until November when it just disappeared.

Consultant visit 2 weeks ago and all bloods greatly improved. Child Pugh now A5 and no longer on transplant radar.

Hospital today for final bood tests and ACU ward sister who had undertaken all my drains walked passed, did a double take, and said 'my god - you look amazing' then proceeded to get some of the other nurses who had taken care of me.

Made me feel that the hard, and sometimes incredibly challenging, work I'd endured were absolutely worth it.

I will stress that these changes worked for me and I fully understand that I've been lucky they did, and not everyone is able to handle change.

To anyone out there struggling, keep going. It can get easier. And, if you are able to, don't be too proud or afraid to accept any help that is offered to you.

Wishing you all well.

[Jowheeler84 in reply to Rockhopper1]

Thank you so much for sharing your story! So very encouraging like all I see here! And yes success is truly on how you measure it. Thank you for that too! Happy you are doing well

[Glyn1234 in reply to Rockhopper1]

I just want to say that i am happy for you. I also want to say thank you for letting me know there is hope and one should believe. My husband shares the same disease as you , just that now , today we start treatment first ,steroids(methylprednisolone 16mg, 40 tablets. I am a bit sceptical . i don't want to loose him.😔 I know we put our trust in medicine as well.

[Dylant12 in reply to Rockhopper1]

Wow, well done to you, thats fantastic! Great to hear your news, my wife was diagnosed about this time last year after being rushed in with severe Ascites and Odema etc , after several trips back and forth for tests and de-compensated cirrhosis and spending 5 weeks in hospital having drains etc she was discharged last September with child pugh score cat C and weighing about 6st 10lbs with us fearing the worst, however she has not touched alcohol for over a year now , I am so proud of her but it was very frightening, we don't realise how this problem can go undetected until its too late. It has certainly given me a wake up call too, although I didn't consider myself a big drinker, I have virtually stopped drinking apart from the odd glass of wine when my wife is not about although she has said it wouldn't bother her I have felt much better myself without it. We have been on a roller coaster journey this past year but I am so pleased to say my wife is doing much better and has put weight back on she couldn't afford to lose being only 5'1" tall, but now weighing around 8st and looking 100% better, eating well and just yesterday went out in the garden to prune some plants which she hasn't done for over a year!! She has constantly felt freezing cold with our house being like a sauna heating on full blast 24/7 . This is a major achievement in my eyes as she has been such an avid gardener all our married life but last year she would not even step foot in the garden and had no interest whatsoever feeling cold and tired all the time. If it hadn't been for me trying to cheer her up by going out and buying ready made hanging baskets bedding plants etc and tidying up the garden ( I am no gardener!!) for her to look out on and cheer her up when she felt rough, our garden would have looked a total mess. She has already started making plans for the garden planting for this year and has a blood test booked with our GP for next week and a hospital consultation with her liver specialist next month so fingers crossed.!! She does get tired easily has an irritating cough and complains of back pain when she has done too much but we are taking a positive out of each and every day moving forward.

[Rockhopper1 in reply to Dylant12]

Thats great. Really pleased for you and your wife.

It is a long road and in my case a lifetime management plan, but I treat every small step forward (like tying my own shoelaces again!), as a hugely positive thing.

And yes. Cirrhosis can be a really silent condition for a long time before jumping and saying 'yoo hoo! I'm here!'

Wish you both all the best with everything. It can quite often be harder for the carer rather than the patient as you have little control.

Don't hesitate to get in touch. The liver nurses are brilliant.

[Hope1011 in reply to Rockhopper1]

That’s great. Really pleased for you! You mentioned ‘strict diet’ I would be interested to know a little more in detail please, if you don’t mind sharing. Thanks

[Rockhopper1 in reply to Hope1011]

Hi Hope1011

Diet is always a bit difficult as it will undoubtedly vary depending on circumstances.

When i was discharged I had lost a lot of weight and muscle mass. Very little strength eg couldn't even pull myself out of the bath. Coupled with the severe discomfort of ascites, i couldn't walk far without being breathless.

I was, luckily, under the care of an excellent dietician. Main changes were zero added salt, no alcohol obviously, and elimination of processed foods ( bacon, sausages, smoked ham, smoked fish etc. This was the hardest!). I also took high protein drinks such as Fortisip with each meal. Carbs also formed a large part of diet, especially as a snack between each meal but I have a high metsbolism and burn off calories quickly.

Fortisip can be very expensive but i was able to have it prescribed to me though NHS.

Whilst this was the diet that worked for me it must be stressed that each case is different and it is imperative to seek appropriate advice from a clinical dietician for your individual case.

One thing I did notice more than anything else was I started recognising when my sugar levels dropped (sudden lack of energy, dizziness etc) so now go everywhere with a stash of sweets/chocs as a precaution.

I hope this helps. Good luck with your recovery. PM me if you need to.

[Hope1011 in reply to Rockhopper1]

So sorry to hear that you went through such an awful period in your life. Glad that you are doing well now. I completely understand re diet. Indeed everyone ones circumstances are different but the main thing is common that all processed foods are bad for anyone. Thank you for your detailed reply. Much appreciated.

Hope

[Onesmallstep1969]

An administrator of this site, Nash2 has regressed his cirrhosis. There was a time when doctors thought cirrhosis was irreversible. That is no longer the case, since numerous studies of liver cirrhosis of all different etiologies have shown that it is a "dynamic" rather than a "static" process, meaning it can get worse over time or better over time. The key, as AyshireK has said, is to stop the underlying cause of the liver disease itself. That will then give the liver its best chance to do what it does best, which is to heal. The liver, of all organs, has this built in capacity to regenerate itself. If for example, the liver disease was caused by alcohol, then it is important to stop drinking. If it was caused by excess fat, then it is important to eat less saturated fat and more vegetables and fibrous fruit.

[Xenom0rph]

Depends on your definition of.success I suppose. Busy at the moment but I have a story to tell. According to docs I should have died twice. Still kicking, bitches!

[Oscar21]

I definitely am a success. Was diagnosed 9 years ago with decompensated cirrhosis due to alcohol. What a shock!!! Ascites and given 6 months to live!!!. And here I am 9 years on living a relatively 'normal' life. My advice would be, to listen to the Hepatologists' and take a day at a time. I knew nothing about the liver, only that you ate it with sausage and mash ha ha. I used to attend my appointments with a note pad and pen and make a list of questions I needed to ask and wrote the answers down. I have had no alcohol in the 9 years and will never again. It is poison and we can all live without it.

[Jowheeler84 in reply to Oscar21]

Congrats on your success! That is very encouraging! When you say "relatively" normal life, what things are different for you?

[Oscar21 in reply to Jowheeler84]

The main problem I have is fatigue. But I listen to my body and sleep if I need to. It's a common side effect apparently, so no point complaining, I just live with it. There's loads of people alot worse off than me.

[Jowheeler84 in reply to Oscar21]

Any suggestions as far as diet, meds, etc?

[Jimmywaz]

I am 38 I’ll make it brief as not a good typer, sent to hospital after blood results coming back from really bad stomach, toilet issues, I knew it was drink related as I’d already had alcohol hep c and as told to stop because leads to cirrhosis. Doctor told me to go ASAP I said I’d go in the morning because I had no transport, he sent me an ambulance. In hospital for over a month with decompsated stage 4 cirrhosis, acute portal hypertension, turned bright yellow, renal bleeding, on drip 24/7, wee bag, kidneys were failing too, docs and consults thought I was 50/50 massive water retention, looked pregnant, legs like elephants and my penis swelled up so much I couldn’t urinate... couldn’t eat, extreme pain... terrible

Lost the plot in hospital seeing things, shouting at walls, messing the bed, lost about 3 stone in a month.

1 year later no drink, eating the same food before I got really bad just more haven’t really changed much about my lifestyle apart from the alcohol, I still even smoke a few cigarettes maybes 2 a day pushing my luck I know!!

and my latest results have came back my liver is now compensated I haven’t taken water tablets for 6 months I take 1 beta bloca, rixifim and my vitamins, my consultant says my liver continues to improve and so do my bloods every time I go back my last meld score was 11 waiting on latest, so there is hope out there and I haven’t done much really apart from the booze, but I think I’m just lucky because of my age and how fit I was before this.

Some of my symptoms are greatly helped with a herbal remedie for my aches and pains, and help probably the worth effect it has on me, my emotional state the ups and downs, how long, transplant or not, the big house, the commitments, marriage, kids???

[Worriesalot in reply to Jimmywaz]

Glad to hear your health improving. I try to take a day at a time. I’m not diagnosed yet and dreading being told but have severe symptoms. Scan will reveal all I suppose.

[Rosxx08 in reply to Jimmywaz]

Wow. This is incredible to hear!! Very pleased for you!! My older brother is only 34 and at a similar stage to how you were in hospital. We really don’t know which way it will go but are preparing for the worst. I’m trying to learn about liver disease through this forum. I know everyone is different but it is so reassuring to know things can turn around, so thank you so much for sharing your story! Xx

[Jimmywaz]

Symptoms can and will pass or ease with treatment just takes a bit of time, thought I was never gonna get back to nearly normal, but u will.

[Jimmywaz]

I was wondering too if it is possible to go from decompensated to compensated is it possible from 1st scan coming back stage 4 to a second over a year later that it would still be stage 4 or improve to stage 3 or 3.5 surely if liver is improving, can stages improve or be wrongly diagnosed?

[Worriesalot in reply to Jimmywaz]

From only reading on here, it can.