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.

This information is primarily for physicians but may be of value to some of our patients. As a patient, it is important to know that the interpretation of a Fibroscan score is not simple.  The meaning of a test depends upon what caused the liver damage as we can see in this scoring guide.

In light of this, it is important that a qualified physician makes the interpretation of your test results.  Some of the guidance available for physicians is found in these documents.

Fibroscan Physician Interpretation Training

Fibroscan Clinical Publications

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.

https://fatty-liver-foundation.clientsecure.me

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An ironic curse with the clear implication that 'uninteresting times', of peace and tranquillity, are more life-enhancing than interesting ones.  Another cautionary message is 'be careful what  you wish for', and yet another 'fools rush in where wise men never go'.

Cliche man is here apparently, but the old warnings aren't necessarily wrong.  I want to let you know that the foundation has entered an 'interesting time'

We have been greatly honored with support and now it is time for us to stop talking and start dancing.  Intercept Pharmaceuticals has agreed to provide the first funding for our screening program and we plan to open our first pilot facility in Houston in the summer.  For those who have joined us recently, we advocate building 400 screening centers across the US and to screen 1 million people a year who are at risk for liver disease from the large co-morbid (people with multiple diseases) population.

When I think about screening for liver disease I often find that tune from My Fair Lady, "Why Can't A Woman Be More Like A Man" running through my mind.

It is an odd mental tick I suppose. One of my favorite musicals connecting to a potentially terminal illness, but the challenge we face as liver patients would largely vanish if only a liver was more like a breast.

OK, I stretch the analogy a bit here but consider how cancer is managed.  We search diligently for cancer and while there are significant differences between cirrhosis and breast cancer the statistics are interesting. There are around 40,000 deaths annually from each disease, but we search out the tiniest incidence of breast cancer that we can find and manage it aggressively but we ignore liver disease until it presents serious symptoms.  Think about that for just a moment.  Why would we test breasts regularly but intentionally ignore early liver disease?