Hopefully you clicked on the picture to hear the very short quote from Shakespeare. Sometimes I can't resist a bit of drama.
Since you have an interest in liver disease, I wanted to let you know that we have reached a real milestone in the development of the foundation. We intend to help change the way liver disease, particularly NASH, is managed and to save the lives of millions who do not know today that they are at risk.
The sad statistics are easy to find. Here are a couple of links if you would like a refresher.
All of that is just background. The news is that our study has been officially accepted in the ClinicalTrials.gov database.
Remember our goal. There are 20 million Americans with undiagnosed NASH liver disease. We want to screen one million people a year and warn them of their disease condition before they progress to having symptoms. Wellness should be our strategy not the treatment of symptoms. The Sunn study is the pilot phase of our project to deploy 400 screening systems around the country to help people be well rather than struggling with illness.
There is a tide in the management of large societal problems. Liver disease has been building in this country for decades. The doctors and some politicians know it, but there has never been a momentum for change that had a chance to develop. That is changing. The acceptance of our study as a serious research effort, aimed at the people who do not know they are in harms way, is at the crest of a wave which can reshape our approach to wellness.
We are entering the time when the mission is not can we learn something new, it is changing to how do we figure out how to build capacity in our preventive care and wellness systems to prevent disease. These subjects have had a lot of discussion but much of it has been mostly sound and fury with little real impact. Taken at the flood, however, real progress is possible. The tens of billions of dollars and millions of lives lost to problems that were preventable does not have to be our destiny.
There are some benefits to being an advocate. Sometimes you get to be first. We just finished training and certifying our staff to do FibroScan tests. As part of that I got to be the first one tested. Getting to this point has been a long journey, about 9 months, so a birth of sorts though happily a painless one. Everyone shows off baby pictures, here is beauty for anyone who hasn't seen a FibroScan report. This is my new scan. Click on it if you'd like to see the full size view.
Although this note is about our screening project, it is also an opportunity to reinforce our view that with lifestyle changes it can be possible to improve liver health, even for a cirrhosis patient. For any who don't know the story, when I was first diagnosed with cirrhosis my Fibroscan was 21.5. Today it is 9.6. The measurement is the stiffness of the liver which is a function of how much scar tissue it has and in staging I started as a stage 4 and am now a stage 3. Here is a chart of how my disease has progressed since I was diagnosed. This was achieved entirely by diet and lifestyle changes.
Because there is a lack of good information about liver disease and so much bad information, my wife and I were led to create the foundation and to become advocates for wellness screening for liver disease. Our plan is to deploy 400 screening centers across the US and to screen a million people a year who are at risk but have no symptoms of liver disease. We believe in warning people before they get sick that they are at risk. In case you don't understand how big the problem is consider how diabetes and liver disease are companions in a march to suffering that millions of people are now on.
If you happen to live near Texas City, Texas and think you might benefit from a Fibroscan click this link and make an appointment.
Thanks for your interest in the foundation. This is the beginning of an important period for us but is just one small step toward better health in our society.
In every battle there are moments which mark the end of an era. They portend the beginning of something new and a time when tiny things can sprout and grow to a vast scale. We have just completed our installation and certification of our first FibroScan system for our liver screening project. We are alive and well in Texas City and a new day is dawning.
Sometimes analogy man gets loose in my mind and I apologize in advance, but I'm drawn to the stories of things that speak to universal truths. Did you know that the biggest living thing on earth, the giant redwood, grows from one of the smallest tree seeds? You can never be sure what can come from small beginnings. I'm reminded that each of us, moving through life as a willful collection of trillions upon trillions of individual cells, was once just a single cell unlikely to survive at all. And yet, here we are as entities so biochemically complex that it should not even be possible for us to exist.
The age of technology has exploded around us and our world is filled with magic undreamed of by our grandparents. We take societal transformation as just an ordinary thing today. Can you remember life before 2007 and the invention of the smartphone? Our culture has been transformed by that single tool in only a decade.
Our inventions have not come without cost, however. Our society has adopted an approach to food which is fundamentally unhealthy. We are engaged in a vast experiment which will determine the cost in lives and treasure that come from easy access to too much of the wrong kinds of food. It is not unlike the experiments we perform by free feeding rats to study obesity. It is the largest experiment ever conducted on human subjects in which death and ill health will be the measured outcomes. Sadly, it is an accidental study which wasn't well designed.
Did you ever wonder if a rat that is the subject of an experiment ever tries to escape from it? Might we, as a society that is the test population ever decide not to participate? I'm reminded of that old movie War Games where the computer plays thermonuclear war and seeks to destroy the enemy, which happened to be us of course. The punch line was that the computer decided, "The only way to win is not to play the game".
Just one more and I promise to stop. There are signs that we may be able to be the rat that escapes. Think of all the diet and nutrition messages that are recently showing up in the media. Dieting is big business. Miracle foods and miracle supplements are offered to you endlessly. The chorus of how to's and listen to me ( but give me your money first ) sings from every media source. These are like the rain drops that fall in the mountains. Each is an event meaning little but they can combine in a torrent which sweeps away everything below. We have rainfall in the mountains now and we will learn what impact it has on society and health in the fullness of time.
So what does all that mean to us you might ask? I submit that as a nonprofit patient advocacy group we can become the conduit for patient education about fatty liver disease that is free of the bias that comes from product marketing pressure. People have complex relationships with food and there is no one size fits all, no miracle answers, no shortcuts that will stand the test of time. We also deal with the reality that humans don't respond in orderly or convenient ways to information and often act in ways that are against their best interests. Human nature defeats most plans but does feed the yoyo dieting industry very well.
What to do? The key is to create a teachable moment. People learn when they engage their minds on subjects that have real meaning to them personally. We are engaged with the foundational problem of fatty liver disease which is co-morbid with many of the ills people face. We can't hope to directly affect the 100 million of us who have fatty livers but if we can reach out to those most at risk and make a difference in their lives that message will cascade through their families and spread widely. A teachable moment requires a "mental hook" of some kind. For us it will be the measurement of the status of their livers which is expressed in numbers. People easily tie concepts to numbers and from that, learning can happen and behaviors can change.
Our goal of testing a million at risk patients a year and providing them with science based information to help them understand their food, not just follow some recipe, will be the thing that channels all of the diverse messages into an effective force for change. We believe this program can be that redwood seed that grows into a real force for a better way, longer lives, and less disease for millions.
If you stuck around with me this long, thanks. We do appreciate your interest and support.
You can now schedule a FibroScan liver screening test in Texas City
The goal of the study is to identify patients who are at risk for NAFLD or NASH but do not yet have any symptoms. The study will provide information about the incidence and demographics of liver disease in the general public.
WHO CAN TAKE THE TEST? You must be at least 18 years old, not pregnant, and do not have any implanted electronic devices.
FASTING PLEASE NOTE: You should fast for at least 3 hours before the test so plan your schedule accordingly.
FibroScan liver stiffness and fat content tests are being offered for free to patients who have a high risk of liver disease, such as NAFLD or NASH. Patients who suffer from diseases that are related to obesity or lifestyle, such as type 2 diabetes, are most at risk but liver disease can be associated with a wide variety of illnesses and still present no symptoms until the organ is badly damaged.
I recently wrote about my view that for the first time a cirrhosis patient could look forward to real medical therapies. A few folks felt that I was planting false hopes and that such miracles weren't going to happen. In light of that, I thought I might provide a broader view of the situation today.
Some of you are old enough to remember that not so long ago Hep C was unknown. We called the illness non A non B hepatitis. Today we have a cure. A miracle perhaps but also a lesson.
I spent my life as an engineer and I guess that gives me a somewhat different perspective than those in the health sciences. That relates to this discussion if we step back and consider what the difference is between science and engineering.
We live is a magical time for the scientists. We have powers undreamed of a generation ago. For example, you might watch a few videos about some of the many new tools recently available to researchers and consider what it means to have tools like this.
SEEING THE UN-SEEABLE FROM THE DISCOVERY CHANNEL
From living cells to the atoms themselves
These are certainly interesting you say but what does that have to do with a treatment for my NASH? That is the question. Was it fair for me to say that actual therapies are on the horizon?
Discovery isn't made in a vacuum. You don't just find truth one day in your laundry. Progress is built brick by brick upon the efforts of those who have gone before, and most importantly it depends upon the tools available to do the work. This is where the line between science and engineering exists.
Science is the discovery of things that are unknown. It is the probing at the boundaries of knowledge, imagining what might explain some unanswered question and proposing how to prove or disprove that idea. Usually the quest began because of some mystery or anomaly exposed by the current generation of tools. Answering this new question becomes the realm of the engineer because new machines or ways of solving problems must be developed in order to probe the workings that produced the question.
OK, a bit theoretical here, but what does that have to do with therapies for liver disease? I'm glad you asked. The solutions to great problems go step by step. In the beginning there are so many unknowns you are just searching for any kind of unifying idea. As you learn about the details the future possibilities gradually become more clear. At some point you learn enough that you can say with confidence "This is a solvable problem". You may know for certain that you don't have the answer yet, but you do know that there is one and that you can find it.
That is where we are with diseases like NASH and cirrhosis. Our tools have advanced to the point that we can watch live cells operate in real time. we can see to the very fundamental core of the processes that they do. Even though it is mind bendingly complex we know that we can understand and manipulate the chemistry of those cells.
We are now doing the engineering, the construction of a solution and we are quickly kicking the scientists to get out of the way and find new frontiers to explore because our tools and knowledge are advanced enough to build solutions, not to just look for relationships. That is why I am not speaking of miracles when I say that we can see therapies on the horizon. The timeline is murky but not impossible to glimpse anymore. When a problem becomes that of exactly how do we do this? Instead of can it be done at all? We have crossed an important threshold and in medicine that battle has changed in just the last few years. The message then is this
If you can force your heart and nerve and sinew
to do their turn long after they are gone,
and so hold on when there is nothing in you
except the will that says to them hold on.
Yours is the liver that can endure
and what is more, survive to a cure.
Apologies to Kipling, our best to you and yours. Remember diet is critical to your liver. In case you forgot, here is a place to start again.
The picture was taken June 2018. My hubby and I are about to be 55. It’s hard to believe that in the past 11 months I was diagnosed with cirrhosis, diagnosed with HCC, had 3 surgeries and about to have a 4th, been admitted 4 times to hospital for non surgical reasons and in the ER 17 times. I’ve lost count of the number of CT scans, MRIs, ultrasounds, and other diagnostic Radiology tools. I don’t remember all my doctors names or even what their specialty is. I’ve gone from not being able to walk to the toilet from my bed to hiking to see a waterfall. I’m alive.
When I was first diagnosed, my doctor told me his goal was to get me to die of an old age other than Cirrhosis complications. I was severely decompensated, leaking 2-3 liters a day of ascites from a surgical incision, and didn’t have a clue. I was scared to death because of all the things I had found on Dr Google. I was ready to give up.
One of the things he really emphasized was to not pay attention to any statistics. There were things I needed to do to help my body heal...but he couldn’t do it without me really jumping in and owning what needed to happen. I had to cut my sodium intake to less than 2000mgs per day. I needed to cut out processed foods, focus on lean protein and plant based protein. Even though I don’t drink, no celebration drinks for anything. I needed to increase my activity in whatever way I could...even if it was lifting a soup can 10 times with each hand. He also asked me to listen to what he said and not be afraid to ask questions.
It’s been a year since diagnosis. Yes, there are still things I have to deal with every day...some days more than others. And this disease is never far from my mind. Every thing I do or don’t do impacts it. I do constantly have a running calendar in my head of my doctors appointments and test dates. Due to being diagnosed with HCC in May and had an Ablation last week, everything is slightly increased in speed. I see my Hepatologist every three months and have blood work and CT scans every three months. Every day my breakfast appetizer is a handful of pills that keep the symptoms at bay.
It doesn’t matter what the cause of your Cirrhosis is. Mine is from NASH...but it could also be left over damage from being a hardheaded college kid who liked to party too much 35 years ago...or from being a teenager who liked “speed” a bit too much to get through what life had dealt me. We all have a past. Sometimes it’s yesterday. Sometimes it’s 50 years ago. Our past doesn’t define us.
You matter. Your story matters...even if you’re not ready to share it...it’s still important.
My story isn’t done yet. It’s being written everyday. Someday, not soon, there will be a finishing period to my story. But not yet. I’m going to live! How about you?
The National Fatty Liver Registry (NFLR) is in its design stage. As outlined in our Screening Project introduction, there is a great need for identifying patients at risk and with liver disease. Our goal is to build the largest database of tests for liver disease in the world. At scale and full deployment, our target is one million tests per year, capturing valuable data for epidemiological and interventional research.
The fundamental goal of the Foundation is to alert the individual patient to the risks they may have of developing liver disease as a result of lifestyle issues. The Foundation is also commited to building a research resource which will deliver lasting benefit to society at large and to the research community.
The Foundation is taking a proactive, leading sponsorship role in the development of the NFLR. We are working with leading organizations and partners to design and implement this strategic project. If you have interest in being part of the effort, contact us for more information and how you can help.