Fatty Liver Foundation organizer

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


  • commented on WISH I HAD KNOWN 2019-02-11 16:05:56 -0700
    Green is usually used as the color for liver awareness, here is a link to a discussion at the ALF forum https://www.inspire.com/groups/american-liver-foundation/discussion/liver-disease-awareness-ribbon-color/
  • Can blood tests tell you anything about liver health?

    As an experiment, let's say that you are a person who cares about your health.  Assume you know that liver disease is commonly asymptomatic or silent. It gives you no clue that it is dying until it is in bad shape.  As an advocate for your own health, can you look at your own medical history and decide how likely it is that you need in depth diagnosis for the silent killer of cirrhosis?

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    There has been a lot of recent research on blood based screeners and the field is advancing rapidly.  It is still early and the broad practice of primary care medicine has not yet started using the best information available routinely.  However, we now know that we can look at something more than just whether AST and ALT are elevated as guides to advancing liver disease. It is important to understand that high levels of these tests indicate that a lot of liver damage is occurring.  What you want to know is are you at risk of being in that situation even though you have no symptoms.

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  • published donations 2019-02-03 11:02:28 -0700

    donations

    We offer multiple ways that you can donate.  In addition to our main donation processor, you may select PayPal or donate through the Network for Good, a service that supports many non-profits.  All are fully secure and donations through any are tax deductable.

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  • published DONATE in How To Help 2019-01-31 19:38:14 -0700


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

    Terri Monclova Milton

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    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?


  • 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

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    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.

     

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

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    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?

     

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  • 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.

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  • 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.

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  • 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

Engineer and cirrhosis patient, founder of the Fatty Liver Foundation

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