Just a quick question really. I was wondering what experiences people have had with progression of their liver disease and if its happened quickly or slowly?
I have gone through and read alot about reversing there liver damage which is fantastic news and is very reassuring that I shall be doing the same! but being the pessimist that I am I would also like to hear peoples stories of how there liver disease has progressed and what potentially has caused it to progress.
Unfortunately, mine went straight to HCC stage 4. Never knew I had NAFLD or NASH. I am blessed immunotherapy has made my cancer stable.Wayne
I am sorry to hear of diagnosis, but happy the cancer is stable 👍
Thus far, things have been stable but I wonder most everyday about tomorrow. It's hard to watch the diet while others around you don't but on the most part I do well, slips every now and again. Slacked on exercise, now trying to get back to that. It's a battle for sure, ups and downs dictated by life and things that happen in general that affect you mentally. I just pull my pant straps up and go forward as best I can!! I hold my breath with every blood test, so far doing well.....
I like your attitude! I shall be trying to do the same 🙂
typical time between stages is 7 years with F3 to F4 accelerating and shorter. I personally went from F2 to F4 in 5 years which is very fast but I've regressed to F3 and holding at this point.
and I'm guessing a lot of work on your part to make it back to F3! you have amazing to do that! its interesting to know what the rate of progression between people
I track everything now so I record all my bloods/weight/measurements, so I see the fluctuations and since I had a biopsy I have a baseline on my bloods so I can use these to calculate my fib score over next few years before my next biopsy in 3 years, a bit pedantic yes I know but I like statistics and seeing things visually.
tracking trends is one of the best tools we have.
I went from NAFLD to cirrhosis in 10 years. Never was told how serious fatty liver was or to follow up with scans or anything. I have metabolic syndrome and everything has been controlled with medication over the years but liver disease progressed anyway. I had no idea it was happening.
Your story is my story and everyone else’s story. The same thing we all hear over and over again. How in the world do PCP(primary care physicians) let someone get from fatty liver to cirrhosis. PCP’s don’t have a clue about liver disease.
Sometimes I wonder whether doctors have continuing education! The old eat right and exercise stuff just doesn’t cut it anymore. I think they were all thought the same thing in medical school.
They need to learn how to catch liver disease early on and not let it progress.
In my case can you believe that my PCP I had years ago let my platelets drop by over 100,000 and never once ordered a test or exam! I should be allowed to sue these folks.
Then I was misdiagnosed by three other doctors with ITP because my platelets were low.
That is my story of how I got to cirrhosis. The years just pass by due to medical incompetence and now I pay the cost. We all pay the cost. It is pathetic and sad. Sorry to rant.
We’re entitled to our rants. The medical profession has let us down.
VeeWat sent me a link in another post to a presentation by Dr. Robert Gish, a liver specialist who is trying to change how doctors should follow up on patients with any signs of liver disease. I think you’ll find it very interesting. He’s got lots of great videos on YouTube. If link doesn’t work just search on YouTube for him
m.youtube.com/watch?v=vmnQB...
Thanks!, I will take a look. Along these lines, Not sure if you are aware but the CEO( Wayne Eskridge) of The Fatty Liver Foundation and one responsible for creating this wonderful site worked with the Global Liver Institute and many other parties to create a comprehensive document for physicians to utilize and treat folks with fatty liver disease. He posted this information on the US Hub portion in early February of this year. I personally passed this document to my current PCP. I dont want to have someone else to go through what I have been through needlessly. We all need to educate each other. I am attaching providing the info below:
"The new guidance for managing NAFLD/NASH has been officially published. This is the official guidance by the American Association for the Study of Liver Disease (AASLD) and it is intended to provide primary care and other providers with the information they need to provide care for their patients.
healthunlocked.com/redirect...
I also invite you to check out the new search tool in our Wellness League project. It is designed to help people find services in their local area. Being ill is hard without having to wade through endless advertisements to find something in Google.
thewellnessleague.org/findhelp
Let me know if you think it might be useful to you. "
Wayne
Totally agree. I had to push my GP to tell me I had fatty liver disease and it was only because I saw a new young doctor who ordered a raft of blood tests that I was referred to a gastrenterologist and further tests and cameras etc established I had NAFLD and now cirrhosis. My son is showing early signs of the same which he can now take preventative steps to halt progression. My point is I have T2 diabetes which came first though?, I have familial hypercholosteremia which I have been taking statins for over 20 years which doctor knew about so why was I not tested for liver disease years ago when it could have been reversed? I now have 6 monthly scans, lost 3 stones but have put one back on. My reading was 36.6 now is13.4, but I am out of ideas on how to move forward and am starting to think what the hell. I've tried with little or no guidance from my GP. I have lain awake worried about how long I have left etc so I really am fed up with this liver thing. I have gall stones. A hiatus hernia and as I've said, clean out of ideas. So I really admire you all who have done so well.
I was diagnosed with ITP, I do have low platelets but they have been getting better over time, confidentially after having cholecystectomy (not sure if this can be related)
I have just been told to loss weight and do more exercise which is fine but they say it as if its easily done and expect you to be able to do it instantly.... nothing about liver disease is easy.... especially when you suffer from it.
I am sorry to hear about your diagnosis of cirrhosis, hope its stable! I just found out my mother in law has cirrhosis, and we were comparing how our consultations have gone etc to see how different we have treated, was interesting
Hi , please make absolutely sure you have ITP and not cirrhosis. With ITP, your platelets can come down all the way to zero and you wind up in the hospital. With cirrhosis, your platelets generally hover in the 40’s or low fifties or higher. Please just make sure your diagnosis is correct. Good health to you.
I am seeing the doctor next week so I can raise concerns then, thank you its always better to be safe than sorry 🙂
My story too..
In 1987 I had my gallbladder out and no one said I had fatty liver. Several years later the dr. retired and I received my paperwork to give to next dr., but I never read it. In 2001 I went in for gastric bypass surgery and they aborted the surgery saying I had the worst liver they had ever seen. So I went home and read what the surgeon had written in 1987 and yes I had a fatty liver but no one said a thing. So in 13 years I went from fatty liver to Stage 4 and NASH. I weighed almost 283 pounds. I'm now fight between 200 and 220 and still in Stage 4, but it has been 22 years. I have slacked a lot lately and I have told myself the first of the year we need to drop another 40 to 50 pounds and exercise, which is hard because I think I need back surgery again which I had 8 years ago or the hip, one or the other. I was once told I could not have any surgeries, but I have had about 6 since then. I'm 67 and still work everyday.
NASH Fibrosis Stage 3
Reversing Stage 4 Nash!
S3 to no NASH in 12 months.
How to eat with NASH
