Fatty Liver Foundation organizer

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


  • 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?


  • 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

  • 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

     

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  • published NETWORK FOR GOOD in How To Help 2018-03-19 18:17:19 -0600

    donate now through network for good

    Network For Good supports the foundation and manages donations for us. Click on the image above to go to their secure donation servers. We are pleased to be participate with them as part of assuring you, our supporters, that everything we do is managed properly.  We thank you for your support.

    Network for Good’s nonprofit donor-advised fund uses the Internet and mobile technology to securely and efficiently distribute thousands of donations from donors to their favorite charities each year. Their donor-advised fund is accredited by the Better Business Bureau Wise Giving Alliance and meets all 20 of its standards for charity accountability. View their accreditation information.

    Network for Good, Inc., a Delaware nonprofit, non-stock corporation recognized by the IRS as exempt from income tax under Internal Revenue Code Section 501(c)(3), and its subsidiary Network for Good, Inc., a New York corporation, publish detailed financial summary information as a part of their annual reports, financial reports, and IRS 990 forms. Network for Good, Inc., the non-stock corporation, has retained its subsidiary Network for Good, Inc., a paid professional fundraiser, to assist in its fundraising programs. Financial information about Network for Good, Inc., the charitable organization, can be reviewed online here or at https://www.networkforgood.com/about/financials/ or may be obtained by contacting us at Network for Good, DAF, PO Box 33119, Washington, DC 20033-3119; (888) 284-7978, or as stated below. Information about Network for Good, Inc., a paid professional fundraiser may be obtained by contacting at ATTN: Accounting, 1140 Connecticut Avenue., Suite 700, Washington, DC 20036; (888) 284-7978, or as stated below:

     


  • published Privacy Policy in About FLF 2018-03-13 16:58:57 -0600

    Fatty Liver Foundation Privacy Policy

    About This Site

     


    Privacy Policy

    The Fatty Liver Foundation respects the privacy of its constituents and is committed to protecting the information shared with the organization by supporters and donors. You will be asked to provide your contact information when requesting additional information, making a donation, or volunteering to be added to the organization’s contact list. Personal information provided is used solely by the Fatty Liver Foundation, which does not give, sell, or share this information with any outside parties. This policy applies to information received via online sources as well as information received in any other manner.

    The Fatty Liver Foundation Web site has industry standard high encryption security measures in place to protect the loss, misuse and alteration of the information under our control. The organization makes every effort to protect your online donation and order information by using Secure Socket Layer (SSL) technology. SSL encrypts donation and order information to avoid the decoding of that information by anyone other than the Fatty Liver Foundation.

    The Fatty Liver Foundation will discontinue contact with any person, company, or entity upon written request from the person or a party authorized to make such a request. Written requests can be sent to 3938 E Shady Glen Ct. Boise, ID 83706 or by e-mail to support@fattyliverfoundation.org.

    If you have questions about the Fatty Liver Foundation Web site or our privacy policy, or if you would like to review any personal information collected and request corrections, please contact us at 208-344-0480.


Engineer and cirrhosis patient, founder of the Fatty Liver Foundation

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