The literature out there is so confusing and contradictory.
I’ve read some studies which say NASH, on average, takes 7 years to advance by one stage, this seems too long, I’ve read other studies that say NASH takes less than 2 years to advance by one stage, this seems too short. I’ve seen studies say that once NASH becomes cirrhosis life expectancy is 10-15 years, I’ve seen others that say it’s 2-4 years.
I know the answer is probably “it depends”, but are there actually any accepted time frames?
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nash1996
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I think you have already answered to yourself very well, I think nothing smarter can be made up. I would add all this when assuming that damage factor is still present so no diet, losing weight, exercising etc.
I think the problem to study this from scientific point of view is staging NASH (fibrosis level so F0, F1, F2, F3, F4 and inflammation G1, G2 etc.). You would have to perform several biopsy during long period of time which is not usually done when only NASH is suspected. Too risky. Of course there are other tests like fibroscan, specific blood tests like ELF, liverfast but they are not so accurate.
First off, I am a little confused (sorry!), but NASH, while most definitely and assuredly something to fight seriously, isn't an "oh my gosh I need to write a will" disease. Cirrhosis is the one to worry about and only 25% percent of NASH people become cirrhosis people (see the link below) in a decade. That means that 75% do not, for many it takes longer, but others turn things around and get better.
According to Cedars-Sinai (a very well respected Medical Center in the USA), in America about 16 million American's had NASH in 2017. I can guarantee you 16 million people didn't die from NASH in the past five years (which would be the case if the two to five year life expectancy statement would be true, right?)
Plus you say you have NASH with F2 fibrosis (you wrote this in a previous post). You are from from having to think about dying in my opinion (and please note that I am not a doctor, so feel free to ignore me). From everything I have read It's F4 that is the cirrhosis "oh no" stage. You are not even at F3 yet (from what you wrote). Doctors have patients who have NASH and even cirrhosis for over 20 years.
You also have to remember who is diagnosed with NASH. It's people who have lived a poor lifestyle for a long time (yes, I know, I know, there are some exceptions, very healthy people getting it, etc., but those are exceptions).
Put simply in the majority (but not all) of cases it's not the 33 year old's getting fatty liver/NASH, it's the 63 year old's, and in that case a 15 or 20 year life expectancy is something to be expected anyway, around 80-82 years of age or so is how long the majority of people live in our era.
And has been said before, there is always a transplant possibility (which you want to avoid but it is a possibility) and cirrhosis is NOT a death sentence. A ton of people end up dying with liver disease but not because of it. Many never even know they had it, it's only discovered on autopsy.
Let me repeat, it's serious and must not be taken lightly, I'm not being lighthearted about it. I'm just saying if you are determined to fight, the odds are not stacked for you - but they are not against you. As doctors say "this is a disease where a lot is up to the patient".
Check out these thread from a while ago. There is no reason to get completely despondent at this time if NASH is where you are at and especially if at F2. Good luck and keep your chin up!
It depends on a lot of individual things but there is an overall pattern. The early states of NASH, F1-F2 commonly go fairly slowly which yields the 7 year number. Once the disease gets into the advanced range, F3-F4, the rate of damage accelerates and you see the shorter times. At F4/cirrhosis the trigger is decompensation. Once you hit decompensation you enter the end stage disease category which is very dangerous. Anywhere along this continuum a change of lifestyle can often change the trajectory dramatically and many people stop it entirely but the statistics are generally based on the folks who don't make the changes they need to.
Is it possible to go from decompensated cirrhosis to compensated cirrhosis?
I'm nowhere near that yet and hopefully never will be, but I'm just curious as I haven't seen much out there in terms of reversal of end stage, if anything.
Yes, we do have people who manage it but there are a lot of complications and very high cancer risks so a lot can go wrong but some manage it for years. The liver is a survivor if you give it any chance at all it will try to improve.
Yes it is, happens all the time, but you are no-where near that. Don't think about that for now, just stop the NAFLD/NASH which you can do with lifestyle.
I agree what nash2 says above, as long as it's not decompensated cirrhosis yet (and it's not that for you yet) it can be halted and turned around for many people if they "do the work". In some cases like AIH or PBC "willpower" alone is not enough, but fortunately for those cases and especially Hep C, there are medicinal cures or at least medical "slowdowns" possible. Hep C is curable now.
This gives no guarantee but it does give hope to other forms of the disease. The thinking is - Hec C has shown that as long as you stop the harm (virus, alcohol, etc.), the liver, if not decompensated, can in some cases heal or in a worst case scenario at least it can keep functioning for years. So count your lucky stars, cut back on bad foods, move about, and keep us posted. Sincere good luck, you can do it!
No I feel that it depends on each case, how you lived,how you took care of yourself, how good the Drs are, not sure where you live whether in the states or over seas?, some people I have talk to from great Britain say their Drs don't have same opinions as my Drs here at IU Medical Center in Indiana, so there are a whole lot of variables. And again this my opinion from lots of letters I have read, I am no doctor.
21 years ago I had gastric by pass that was aborted because when they opened me up they saw my liver and said it was the worst liver they had ever seen, well this Dr. saw a lot of over weight people because all he did was gastric by pass. They did a biopsy while they had me open and I was diagnosed with NASH. I weight 283 pounds. Today over 21 years later I weigh 215 and I still have NASH, I have been in Stage 4 for over 10 years, probably all 21 but they didn't know how to test for everything 21 years ago. I do everything I ever did but in moderation. I listen to my body, when it is tried and won't go. I go to bed. I sleep 8 to 9 hours most days. My liver digest best at rest. If I eat something that does not digest well, I think about my situation. Was I stressed, in a hurry? If the liver doesn't like it I don't eat it. Beef especially, I haven't had a steak in at least 14 years. I will eat a little beef once in a very great while, but there are days you just have to have a cheeseburger, which might happen once ever couple of months, but I think am I stressed, what is my situation before I eat it. I just finished up 3 years of research for a cure, I'm still in stage 4, it did not reverse the cirrhosis, however my numbers are way down. Fat deposits are not as thick, inflammation is down, a few other things were down too, but still in Stage 4 per my biopsy. I'm living my life the best I can. You risk of dying is less than getting in a car and driving or riding around all day. I'm just living my life, when my number is up, God will tell me, but live right!!!!!
i totally agree on the literature out there is so confusing and all say different things and diets to follow..etc.. I listen to my body also and rest and I am mediterranean diet, yes I miss my steaks but I want to live my life to the fullest and if I do eat something I shouldn't, I feel so guilty about it. My motto is " Get the best out of life, don't let life get the best of you!"
I will write my wifes history. I have posted here before.
My wife was always fit. Not a fitness geek but never obese. She was upset about gaining weight when our daughter was born in 2003. Due to her age 38 she was closely monitored through the pregnancy.
From 2002 to 2007 she had regular doctors visits yearly physicals. Her only issue was she was a mild moderate smoker. All her xrays and lung tests were normal.
We moved to Canada in 2007 and got a good doctor. She continued her yearly physicals and regular checkups. No issues.
My mother had a massive stroke in 2015 and we moved in with her for a bit to help her. And Margaret gained weight from stress and anxiety.
We moved to Alberta in 2017 and she lost most of the weight. She fell in the driveway one snowy morning taking our daughter to school. And for about a week struggled to walk. And we went to the hospital.
They struggled to find a root cause to explain the pain. A doctor decided to do a CT/US to check for Gallbladder liver issues that may be radiating pain. Her LFT tests were normal. CT/US came back normal.
She was able to regain walking, but the pain was still bad from time to time in her HIP. So we went back another CT/US/MRI was done found nothing but some age related degenerative issues in the spine.
But she was diagnosed with a low thyroid so spent a few months back and forth with the doctor as they adjusted the dosage.
In 2019 I was transferred to the US, she saw our new US doctor had a full medical. Everything came back perfect.
End of January 2020 she caught pneumonia, and we went to the hospital. They now know it was COVID 19 but at the time did not know what it was. They did a CHEST/Abdomen CT no abnormalities beyond the Pneumonia. Blood work beyond the infection was normal.
Over the following months she struggled to eat, nothing had any taste or smell. We went back 2-3 times. They said side effects of the antibiotics.
Life continued on, I have many pics of us out at the lake, out shopping celebrating our daughters birthday, my birthday and her birthday in August.
But by August her weight loss was noticed. In Sept we went back as she was not feeling good. Another CT/US was done, and her liver was enlarged lft's normal. Considering past imaging was normal. She was sent home with Fatty liver.
Oct 2020 we went back, as she was feeling weak, CT/US showed liver size still enlarged gallbladder spleen normal... but the CT/US showed a mass compressing the IVC, and Portal Vein. And a blood marker triggered a worry about Cancer. That night she was told she had liver cancer that had spread to the lungs and intestines
She was admitted and spent the next 3-4 weeks in the hospital. Multiple Biopsy's, Pet scan, MRI.
Final diagnosis? NASH, caused by rapid weight loss. No cancer. They were worried about the blockage of the IVC, and Portal. And were preparing operative measures to get them open.
When the follow up CT prior to surgery showed the mass vanished and blood flow returned to normal.
She was sent for Physio and home. Thanksgiving was normal.
The week before Christmas, she threw up blood. We rushed back, and they could find no direct bleed but noticed variances in the Eshphugus. Another biopsy showed Borderline NASH F3. The doctor said borderline as inflammation is bad, and there is bridging fibrosis. The liver architecture is normal. But the inflammation is causing blood flow issues.
We came home, December 2020 to June 2021, normal, just physio, no bleeding issues. June Follow-up MRI/CT and another Biopsys. MRI/CT showed Liver has returned to near normal size. And Biospsy showed Fibrosis at stage 1/2.
At this point, they also did heart tests and found the heart normal. But we're concerned about the slow progress in physiotherapy.
Followed up with the Liver Specialist in July of 2021. He said your liver is near back normal. I know your moving back to Canada make sure to follow up with your GP when you get back within one year.
During the trip Margaret developed edema in the left leg.
We went to a hospital here; GI showed no vacancies, no issues. CT showed fatty liver, the US showed fatty liver, lfts were normal. The hospital reported liver function tests were normal; they did a cirrhosis work, up came back negative.
Sept 2021 came home. Sept 2021 to July 2022 normal, Margaret was working with Phsyio able to navigate the house with her walker. Slowly regaining strength.
In July 2022, while going from the kitchen to the living room, she complained she had pulled a muscle in her leg. A check showed her calf red and swollen. A concern for a blood clot. Off to the hospital. Suddenly, she has anemia issues and kidney issues. And is admitted.
August, she is discharged and looks rough and can't walk on oxygen. We start working to get her strong. By November, off oxygen was able to walk to the table for Thanksgiving.
End of November, she throws up blood and goes off to the hospital. GI shows no vacancies and no stomach issues but Severe esophageal erosion. On PPI BID for 3 days and home.
On Day 2, she crashed, and they could not figure out what happened. But we discover between July and November. Someone wrote in her chart that her old Biopsys from Oct of 2019 showed NASH with F3 fibrosis, as stage 3 Nash, which in Canada is Cirrhosis. We discovered since she had a nonvariceal bleed, the ER doctor saw cirrhosis, and we started her on an IV of Ceftriaxone and Vancomycin. Leading to a VA-AKI and Drug-induced hemolytic reaction. She was admitted. The US showed fatty liver, but she had elevated bilirubin in the presence of a normal US with normal LFTs,
She was admitted and almost discharged in December but caught COVID-19 in the hospital due to a COVID-19-positive person being admitted to her room.
She was almost ready for discharge when she had another bleed on Dec 21st. Again CT found no vaciel bleed, treet with PPI BID due to GERD. Again, given ceftriaxone and Vancomycin. TRrough levels go through the roof, and kidneys go south.
By mid-January, she was gaining strength back, but then caught RSV due to a mistake, became septic, and was admitted to the ICU on Jan 16th. ICU doc says your wife has cirrhosis, and its decompensated. I said what? How? He said it says so here... I said, " That's wrong. He said well, what do we need to do to your wife here in the ICU? If she has decompensated cirrhosis, it will most likely kill her. 3 days later, she recovers and is discharged from the ICU; the ICU doc says your wife's chart is wrong. She does not have cirrhosis.
A new doctor comes in and says your wife does not have cirrhosis, but we sure have messed up her kidneys, but we can fix that. Jan 27th, my wife's left lung collapsed at the hospital, and she acquired pneumonia. On Jan 29th, a nurse rushed in and stops the IV. Apparently, labs had called her Trough Levels were in the severe toxic ranges. She will die that night from renal failure.
I can’t begin to imagine how frustrating and difficult this journey was for your wife and you. It is troubling to hear your story and how she didn’t get good decisive health care. She deserved better.
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