Anniversaries often lead to reflection and assessment of the past. I recently had several. I had a birthday, I'm 83, I had an anniversary, married 32 years, I am 15 years post cirrhosis diagnosis, and 2 years into my cancer journey. Summer seems to be when things happen in my life, but it got me thinking about the healing processes and how we are so easily defeated in our efforts to regain or maintain our health.
In my roles as a patient and patient advocate I've observed the journey of several thousand people at this point. When I compare my journey to that of so many others I find it striking that I have been successful at coping with disease when so many others are not. To put that comment in perspective, I am managing two life threatening situations pretty successfully. For those who don't know my story, I was diagnosed with NASH cirrhosis in 2015 and multiple myeloma in 2023. A couple of charts tell the story here.
The first chart shows my liver stiffness improving from stage 4 cirrhosis to a stage 3 and the second shows how much cancer is circulating in my blood. With myeloma, it isn't currently curable but what the chart illustrates is that the drugs are working but most importantly, my liver was able to manage the heavy doses of potent cancer drugs required to control this cancer. I've seen many patients in both populations who have passed away and the combination is really deadly so why am I doing so well I wondered.
I've seen many patients diagnosed with cirrhosis at my level who weren't successful and most patients with a damaged liver are not able to cope with the blood cancer treatments. At 83 I'm well past the typical sell by date for American men and part of that is genetics. I'm fortunate to have many elderly relatives but I'm uncommonly healthy and have mostly retained my faculties (unless you ask my wife about that of course).
I think our biggest problem is that as humans we have a short term focus. When dealing with a metabolic disease we so easily fall into the search for a "fix". We are constantly bombarded by the "superfood" and "super supplement" hustlers promising salvation. We imagine that there is a cleanse, a course of some kind, or relief in a pill that will save us.
The fact is that with liver disease in particular there is a clock. Liver cells are renowned for the ability to regenerate but that repair cycle, assuming you stop doing whatever got you in trouble in the first place, is 6 to 12 months. You can see it in the first chart above. It took me 18 months of dedicated, consistent dietary management to stabilize my situation. There is no quick fix and as humans it is so hard to create a habit and stick to it over the long term but if you are dealing with a metabolic disease it is critical to understand that lengthy process. We create these problems over decades and resisting the siren song from the health hustlers and their promises of an easy fix is really the only effective way to deal with these slow motion diseases.
Lots of info on our website if you want to pursue it
There are some meds that are valuable and deficiencies that can be managed with supplements used conservatively but a good diet, exercise, enough sleep, all the things your grandma said, are the foundation upon which any of those other tools must be based if you are really going to succeed and you must accept that it is a lifelong process. Embrace that and the odds that something other than your liver will kill you is greatly enhanced.
The foundation has expanded our broader outreach to support efforts to find a better way. We have two impact projects, The Wellness League, and Sober Livers which reach beyond the concerns of drug development and focus on the needs of people who seek to live healthier lives and avoid liver disease.
The Wellness League Local Search Tool
Many people don't know what services are available to them in their local area. Finding those local resources in their local zip code is often a challenge. We are developing a tool to help with that. Just click on the link: enter your local zip-code in the form: to explore the services available to you in your area.
In June 2024 Sober Livers, a new groundbreaking organization for patients with alcohol use disorder and alcohol-related liver disease, launched with great success. Patients seeking support that only comes from those that have walked in the same shoes suddenly realize they are not alone.
We can't press the system to do better if we can't show them data that change is needed, so please join us by clicking the link and take the survey.
THE 2025 STATE OF STEATOTIC CARE SURVEY
If you would like to read the report from last year, here is a link to that one.
The State of Care 2024 Lay Report
Or you might find the poster presented at the 2024 conference for the American Association for Study of Liver Disease interesting.
