Fatty Liver Foundation organizer

As a liver disease patient my goal is to help others understand, manage, or prevent the disease


  • published Texas City in Screening calendar 2018-09-15 12:36:44 -0600

    Texas City

    FibroScan liver screening

    If you know you have a fatty liver or a more advanced condition this screening project may be of interest to you.  It is offered for a cost of $50 and you can purchase a test at the bottom of this page. You will then be taken to the scheduling calendar. If you have not visited us before sign on as a new client.

    If you have never been diagnosed with liver disease, but are obese, diabetic, have metabolic syndrome or  other chronic conditions, the cost may be paid for you by a sponsor of our population study of asymptomatic but undiagnosed liver disease. If this describes your situation you can click the link below to indicate your interest and we will see if you qualify for the study.

    Click this link to the Liver Screening Study calendar, click I'm a new Client on that page

    WHEN
    October 08, 2018 at 1pm - January 06, 2019 at 12pm
    WHERE
    FibroScan Screening by the Fatty Liver Foundation
    926 14th St N
    Texas City, TX 77590
    United States
    Google map and directions
    $50.00 USD · rsvp

  • published Screening calendar 2018-09-15 12:32:06 -0600

    Screening calendar

    The Foundation sponsors mobile FibroScan screening events.

    See all events

  • published Terri Monclova Milton in Patient Stories 2018-08-01 15:40:53 -0600

    Terri Monclova Milton

    terri-milton.jpg

    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?


  • published Have you been diagnosed with NASH? in Voices 2018-07-30 16:16:17 -0600

    Have you been diagnosed with NASH?

    If so, you are not alone. This is a link to some patient education materials we are working on as part of our mission to bring the problem of liver disease into the public discussion.

    A personal journey with NASH, things you need to know.


  • Micki wasn't told of her liver disease, why? Doc said no need

    Posted with Micki's permission:

    I think the doctors are just really learning about this beast!! I had a procedure and my liver was biopsied (unbeknownst to me- but luckily records included info) and when I started getting sick- my docs were able to investigate my history and access my records and saw what the problem was.... I was not once notified of the biopsy or results. I went back to the dr that performed it to ask why he failed to notify me- he said there was no reason to bc there is no cure!! I could’ve turned things around- this is going to be one of the fastest growing medical issues over the next 10 years!! These docs better get in the know!!!


  • Health in the land of unintended consequences

    law-of-unintended-consequences.png

    It is said that death and taxes are the only constants but we should include the Law Of Unintended Consequences as a universal truth.  For patients this is particularly true.  We want to be well but every decision carries the potential for things we didn't expect.

    How bad is it? It has been projected that today's children will be the first generation in history to have a shorter life span than their parents. Even with the rapid advancement of medicine the society is becoming less well and chronic disease in many forms is epidemic. Even if we live longer, the end of life when we suffer and die slowly and painfully is getting longer for many.  Not the ideal trade off perhaps.

    Only people who care about living longer and better lives pay any attention to my musing in these articles, but many of you are advocates for a lot of different supplements.  The promises of miracle foods and miracle cleanses are everywhere and the supplement industry is huge.  When you consider supplements remember to consider unintended consequences.

    An example might help you understand the problem better.  Do you know about sodium fluoride? They put it in toothpaste to prevent cavities. That seems like a good thing, no one wants tooth decay. Modern chemistry has brought us tens of thousands of molecules that have made our lives better. They do, of course, enter our bodies where one tentacle of the Law of Unintended Consequences lives.

    Consider for a moment your "mast" cells, these are specialized white blood cells that are a critical part of your immune system and are mainly found in tissues. Mast cells are part of the very complex system that protects you against infections and they are part of initiating the inflammation and repair functions associated with injury.  Like so many things, inflammation is good, until it isn't. It is a critical part of protecting tissues unless it becomes chronic which often then leads to organ damage.

    So what could tooth enamel have to do with the immune system? This is a fascinating example of unintended consequences. The dentists certainly had no interest in any result but better teeth. It turns out that sodium fluoride affects the operation of mast cells.  This matters because allergic reactions and inflammatory processes are significantly managed by mast cells.  You want your immune system to be vigilant but to sit quietly absent a foreign invader.  When a mast cell is modified by a molecule of sodium fluoride it becomes "primed" to act but still sits quietly. If a molecule of calcium interacts with the cell it triggers the release of histamines and other inflammatory elements. So think about that. Brushing your teeth can increase inflammation throughout the body that is probably not beneficial to you. 

    Well, I don't swallow toothpaste you might say.  Perhaps, but is that true of your 5 year old?  Chronic inflammatory disease is a serious health problem.  Our specific community of liver disease patients suffering from cellular damage and chronic inflammation is perhaps affected by sodium fluoride. We don't really know, but the concept that seemingly unrelated processes can be changed by novel chemicals should give you pause when you consider supplementation.

    In health, the Law of Unintended Consequences is alive and well and is just one of the reasons you should be your own advocate and learn all you can and question everything. Medical error and negative drug reactions kill over 250,000 people a year and the number of private deaths, which are essentially accidental suicide, are unknown but no doubt higher.  When you undertake novel treatments for serious disease you are inviting a dance with the keeper of the Law of Unintended Consequences.


  • Your BLISS POINT is being massaged. Do you know who is doing it?

    bliss_point.jpg

    I bet you didn't know you had a Bliss Point, but you do, and it is being manipulated every day by strangers in white coats.

    Not to be confused with the G spot, the Bliss Point, is also a source of pleasure but it can become a pathway to disease and death.

    The Bliss Point is a concept developed by food researchers.  This is the industrial food industry at work.  The way we perceive most foods is by the combination of salt, sugar, and fat which we interpret as "tastiness".  That perfect combination satisfies our brain and makes us feel good and we "like" that particular food. Well whoop di do, that seems like a good idea, who could object to good tasting food?  Well, none of us really, but how might our response to food be used against us?

    It turns out that the perfect taste acts as a "reward" for the brain and it releases a jolt of endorphins which makes us feel good and causes us to remember that food and seek more of it.  This is the process which taken to extremes powers the addiction to drugs and alcohol. Addictive behavior is an effort to satisfy the desire for those brain chemicals which ideally lead us to good responses but when badly directed or out of control lead to self destructive behavior.  It is an important part of being able to survive, but the effect is so powerful that the reward seeking itself can become all consuming.

    OK, anything powerful can be good or bad, the trick is to use it to benefit you.  In this case we are talking about food so surely no one would manipulate food in a bad way would they?  That wouldn't make sense.  If you are in the food business that would just harm your customers so surely no one would do that.

    We all know that our society is becoming unhealthy and obese.  One cause of that problem is the amount of sugar we consume.  Why do we eat so much you might wonder.  Besides all the things we eat because they are sweet, like candies, pastries, sodas, and so on, consider the ingredients in most of the packaged products you buy.  These "foods" have been engineered to hit your bliss point so most contain sugar in some form.  The goal is to get you to buy them, of course, but the strategy is to take advantage of your tendency to be addicted to that jolt of endorphins. In the process the food industry has taken us beyond the tipping point and our health, as a society, is being damaged because nearly every manufacturer is in on the caper.  If you want to keep your sugar intake at healthy levels, most of the products in your grocery store aren't for you.

    If you care about that aspect of health it does lead you to a plant based diet which is the best thing for your liver and other major organs but it is fair to ask if industry has a responsibility not to market products which are harmful to our health.  You probably aren't a scientist, but industry does have them.  If they want to deliver a healthier product they have the ability.  Absent a common goal to be healthier your only defense is to pay attention to the siren song of your Bliss Point. Avoid those merchants of addiction who seek to manipulate your choices to benefit their wallet even though it may damage your health. 

    Dying from sugar does not carry the negative image that death from smoking does but it is every bit as unsatisfying to the person doing the dying.


  • commented on My Story 2018-07-17 12:14:17 -0600
    It is such a blow to learn that information like that isn’t given to the patient. I don’t understand how that ever could happen but it comes up in patient stories far too often. Just another reason for why you have to be your own patient advocate. A lesson here, you own your medical information. Always ask for copies of everything and keep your own files then ask questions.

    Wayne
  • commented on Pilot Project 2018-06-29 10:11:36 -0600
    That was my experience as well and mine was also 2010. That experience led me to start the foundation
  • published Medical Advisory Board in About FLF 2018-06-25 16:45:52 -0600

  • commented on Study confirms the value of olive oil for health 2018-06-23 19:36:08 -0600
    Hi Again Debra
    most people don’t really know how fats work in the body. Since you are asking about an oil you might find this of value to understand how the different fats and oils work

    https://www.fattyliverfoundation.org/triglycerides
  • commented on Overview 2018-06-20 15:39:33 -0600
    There is a lot of information in other pages, this is just an introduction to the subject so take a look at other links in the menu or follow the links from this page.
  • published Laua Zoulek's story, a long journey in Patient Stories 2018-05-17 14:02:08 -0600

    Laura Zoulek's story, a long journey

    I have been Type II Diabetic for about 20 years.  I am 55 years old now.  I have had terrible struggles with keeping it under control as I have always had a food addiction.

    Also, at age 42, I had triple bypass heart surgery.  I blame that on hereditary and on uncontrolled diabetes. My other health issues include thyroid disease, celiac disease, and now cirrhosis of the liver.  Mom had cirrhosis and was not a drinker.  She did not take care of herself and passed from it at age 79.  I believe she wanted to die.

    Many, many years ago, my doctor informed me that I had a fatty liver.  He did not seem concerned at all so I wasn't either.

    Time moved on to the present.  In February of 2017, I started feeling tired all of the time.  All I wanted to do was sleep.  I thought it was because we were moving into a brand new home and it was so much work.  Then, out of nowhere, my ankles swelled up terribly with edema.  I went to my regular PCP, and she told me it was because my blood sugar was high.  She said when I got my blood sugar down, it would go away.  The next day, it was worse.  At that point, I could barely walk.  I knew something was wrong.  I decided to call my cardiologist.  His nurse called me back immediately and told me to go to the emergency.

    Read more

  • posted about Silent Killer: Battling a liver disease that threatens 1/3 of Americans - Wayne's story on Facebook 2018-05-15 10:15:39 -0600
    Silent Killer: Battling a liver disease that threatens 1/3 of Americans - Wayne's story

    Silent Killer: Battling a liver disease that threatens 1/3 of Americans - Wayne's story

    Back in 2010, a surgeon went in to remove my gallbladder and came out with bad news: He was sure I had stage 4 liver disease.

    This came as a shock. I didn't drink much. I had no symptoms of liver disease. In fact, I had hardly ever been sick.

    In the weeks and months to pass, doctors performed blood tests, genetic tests and two liver biopsies, which provided conflicting information. One suggested my liver was healthy. Another said my liver was severely scarred. The blood work indicated that nothing was wrong, but then a hematologist diagnosed me as hemochromatosis — too much iron in my blood.

    For the next couple of years, every time I went to the doctor I'd take my picture and I'd ask about my liver. I didn't know it then, but I didn't have hemochromatosis. I was, however, very sick — suffering from one of the most common diseases in the U.S.

    It's an illness that is growing fast, strongly linked to the rise of the obesity epidemic. The medical term is nonalcoholic fatty liver disease (NAFLD). Doctors sometimes call it the silent killer.

    Read more

  • posted about We want treatment but they can't happen without clinical trials on Facebook 2018-05-13 09:19:30 -0600
    We want treatment but they can't happen without clinical trials

    We want treatment but they can't happen without clinical trials

    I have cirrhosis and all of the research being done to find treatments makes me happy.   However, the dirty secret is that there aren't enough clinical trial participants to do the studies required to bring them to us. If you want to try not to die of liver failure one thing you should consider is participating in trials.

    We also need to educate people who have a silent liver disease. A good way to do that is to share your story.  Put your story in the pool of people willing to help by telling personal stories by clicking on this link.

    VOLUNTEER TO SPEAK WITH TV PRODUCERS ABOUT AN INTERVIEW


  • published why2 in redirects 2018-05-08 11:27:16 -0600

  • published My brain is split, I really hate that in Voices 2018-05-01 14:10:17 -0600

    My brain is split, I really hate that

    I just returned from a conference called the NASH Summit.  It is a gathering of about 200 of the top liver researchers and scientists in the world.  Small but very much cutting edge.  I must say that as a cirrhosis patient I am so encouraged, perhaps verging on rapture, at the progress being made to develop treatments for liver disease.  (I'll get some guff for that kind of language but understand that as patients we know there is no medical help for us today)

    I go to these meetings and I am always so encouraged by what I see there.  This was the first conference where we have presented a poster of our progress which was fun.  We usually are audience not part of the show.  Here is a link if you would like to see it.

    screening project poster

    This was our first real opportunity to announce that Intercept has awarded us a grant to begin the first phase of our screening program aimed at finding people with liver disease before they have symptoms.  Here is a link to information about that plan.

    https://www.fattyliverfoundation.org/pilot_project

    All good.  Indeed, but coming back to the "real" world is kind of like a hangover.  The problem is that the drug trials that are required for treatments to be proven can't happen in the world as it exists today.  Even though liver disease is epidemic and threatens the lives of millions of people no one knows who they are.  The number of active patients who can be considered for participation in a clinical trial is tiny compared to the need.  So as someone who appreciates research I am so pleased, but as a patient I know that any treatment will be delayed by years because of the clinical trial problem. I try not to be angry about it though I fail at times.

    The problem is that even though we know that there are millions of people who are slowly killing their livers, because it rarely has symptoms, we wait until it becomes a life threatening issue to act.  It is standard practice not to screen for liver disease even when we know statistically that someone is in danger.  When we didn't have the ability to screen that made sense, but now we do and that gets my goat.  It is what led to our championing of our screening program but we will need a lot of help to make a difference in any reasonable time frame.  Maybe we'll get it so stay tuned.

    One quick example from the conference to show you just how bad it is.  Research has shown that up to 70% of people with type 2 diabetes have undiagnosed liver disease.  That is a shocking number since there are around 30 million of those folks. A company that does clinical trials reported that they had 35,000 patients in their database.  They asked how many had diabetes and it was 18,000. So how many also had a diagnosis of NASH.  What would you guess that number would be? Thousands surely given what we know of the disease. The answer 219. TWO HUNDRED NINETEEN!!!!! I knew it was a bad situation but that really depressed me.  That is the real world today.  A very large amount of disease cooking along and no effective outreach so no timely clinical trials and death by end stage liver disease. Interesting statistically unless you happen to get on the wrong side of the line.

    Enough for now.  Split brain doesn't help.  I'm headed to Houston this week which is where we plan to put our pilot screening center so baby steps for now.  I'll let you know how it goes.

     


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