Fatty Liver Foundation organizer

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


  • 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

  • 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.

     


  • 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.


  • published Symptoms in NAFLD 2018-03-03 15:45:10 -0700

    Symptoms of NAFLD

    With NAFLD, there are usually no symptoms. Some people may develop signs such as tiredness but fatty liver disease is usually a silent killer.

    If develop NASH or cirrhosis, you may have symptoms such as:

    • Swollen belly
    • Enlarged blood vessels underneath your skin’s surface
    • Larger than normal breasts in men
    • Red palms
    • Skin and eyes that appear yellowish, due to a condition called jaundice

    Fatty liver is a reversible condition wherein large vacuoles of triglyceride fat accumulate in liver cells via the process of steatosis (i.e., abnormal retention of lipids within a cell). Despite having multiple causes, fatty liver can be considered a single disease that occurs worldwide in those with excessive alcohol intake and the obese (with or without effects of insulin resistance). The condition is also associated with other diseases that influence fat metabolism.[1] When this process of fat metabolism is disrupted, the fat can accumulate in the liver in excessive amounts, thus resulting in a fatty liver.[2] It is difficult to distinguish alcoholic FLD, which is part of alcoholic liver disease, from nonalcoholic FLD (NAFLD), and both show microvesicular and macrovesicular fatty changes at different stages.

    The accumulation of fat in alcoholic or non-alcoholic steatosis may also be accompanied by a progressive inflammation of the liver (hepatitis), called steatohepatitis. This more severe condition may be termed either alcoholic steatohepatitis or non-alcoholic steatohepatitis (NASH).

    Severe fatty liver is sometimes accompanied by inflammation, a situation referred to as steatohepatitis. Progression to alcoholic steatohepatitis (ASH) or non-alcoholic steatohepatitis (NASH) depends on the persistence or severity of the inciting cause. Pathological lesions in both conditions are similar. However, the extent of inflammatory response varies widely and does not always correlate with degree of fat accumulation. Steatosis (retention of lipid) and onset of steatohepatitis may represent successive stages in FLD progression.[13]

    Liver disease with extensive inflammation and a high degree of steatosis often progresses to more severe forms of the disease.[14] Hepatocyte ballooning and necrosis of varying degrees are often present at this stage. Liver cell death and inflammatory responses lead to the activation of hepatic stellate cells, which play a pivotal role in hepatic fibrosis. The extent of fibrosis varies widely. Perisinusoidal fibrosis is most common, especially in adults.

    The progression to cirrhosis may be influenced by the amount of fat and degree of steatohepatitis and by a variety of other sensitizing factors. In alcoholic FLD, the transition to cirrhosis related to continued alcohol consumption is well-documented, but the process involved in non-alcoholic FLD is less clear.

    There are no treatments for NAFLD so diet is the way it is managed.  Click on this link for diet information.


  • commented on Clinical Trial, Call for participants, fructose overfeeding 2018-02-18 17:16:43 -0700
    For anyone interested in fructose, here is another link http://www.fattyliverfoundation.org/nash2/fructose_quiet_killer
  • posted about When HE, hepatic encephalopathy, steals your mind on Facebook 2018-02-17 10:42:03 -0700
    When HE, hepatic encephalopathy, steals your mind

    When HE, hepatic encephalopathy, steals your mind

    One of the most difficult challenges of advancing liver disease is when it can no longer manage the ammonia in the blood well.  Ammonia is poisonous to the brain and mimics dementia in many ways.  It can be subtle but it is a challenge for a patient and everyone around.  Some are able to keep a sense of humor for a time.  A friend gave me permission to tell her story here, anonymously of course, as an example of how a bit of ammonia can disrupt your day.

    I suppose it's not a bad day when you are headed out the door with your purse and pants and shoes even had my car keys! Just forgot I needed a bra and a shirt. I inhaled a big amount of lactulose after that. Thankful I didn't go out but it's time to get a babysitter for me I think.

    Most patient stories are about getting lost, driving and having accidents, or conflict with caregivers.  The great difficulty is that the personality changes are often destructive and the poor patient is a blameless victim but is the center of drama or conflict as a result of a medical problem.  Something to keep in mind when you see an apparently deranged person on the street.  

    It is a failure of our system that so many liver patients are destroyed financially by this disease and end up in desperate situations and are uncared for.

    Well, a story of disease that had a chuckle in it has turned a bit preachy so I'll stop but HE is one of the challenges our patients deal with that is not typically understood when mild.


  • All I want is to let him die in peace, why do they make it so hard?

    posted anonymously by admin

    I am going to be taking him to hospital in a little bit to try to get his paracentesis done. If anyone has any pull at that hospital, PLEASE try to help us get him drained today. He needs to be comfortable. He is in so much pain. 

    The on-call doctor at this hospital won't call in his team after hours or on the weekend for paracentesis. Even though I called the department this afternoon, and was told otherwise. We are about to head home. They said he can try another hospital or come back Monday. 

    The hospitalist called the on-call radiologist and he said that he couldn't call in his team at night or over the weekend. My husband seems to hit some kind of road block everywhere he turns. I told them that he didn't have many days left but they still wouldn't help. It's the same hospital that suggested Hospice. I feel so bad for him. I would do the procedure if I had the needle. We still have the liter bottles used for home drainage but they took out his tube when he went to hospice. If he feels like he's up to another ER trip tomorrow, I'll take him to another hospital.

    The Hospice nurse got him an appointment at the hospital to be drained but the earliest appointment they had was the 14th at 2:00 but he can't wait that long so they told me to just go to the ER and Hospice will pay for this one last draining. We just got here and are waiting.

    The on-call doctor at this hospital won't call in his team after hours or on the weekend for paracentesis. Even though hospice called the department this afternoon, and was told otherwise. We are about to head home. They said he can try another hospital or come back Monday.

    Well, his pain doctor gave him his meds. I asked for the same dose he was on at the hospital because he was doing good once they got on top of his pain. But his doctor told him that those Fentanyl patches are very bad for his liver and he won't prescribe those. He doesn't like the patches either. His pain doctor said that unfortunately, nothing is going to be safe as far as long lasting pain relief with end stage liver disease. So, he still has nothing for long lasting pain relief, only immediate. But, I had to put another patch on him this morning because he was in so much pain and his appointment was the last one of the day. His swelling is progressing and about to the point where he will begin oozing out of his feet. The patch, plus his lack of sleep & restlessness has his hepatic encephalopathy flared up. But he is still fighting. Thank y'all for all your thoughts and prayers.


  • commented on research shows fibrosis can heal 2018-03-17 09:36:30 -0600
    Since the advent of the Hep C vaccines we have had the opportunity to see what happens with large numbers of cirrhosis patients when the cause of the liver damage is removed. It turns out that about 18% of F4 patients improve to F3. It isn’t a cure but the liver does do what it can to improve and to remove the fibrosis that isn’t fully “cooked”.
  • published Healthwell Financial Assistance in RESOURCES 2017-12-11 10:39:49 -0700

    Financial Assistance Through Healthwell

    The financial burden of many medicines today is overwhelming even for those with insurance coverage.  We are working with The Healthwell Foundation to try to spread the message that financial help to pay for needed treatment may be available for some conditions.  At this time there are no drug therapies for cirrhosis so all we can do for now is direct you to help if you have hep C.

     

    healthwell-logo.png

    The HealthWell Foundation is a leading non-profit dedicated to improving access to care for America’s underinsured. When health insurance is not enough, we fill the gap by assisting with copays, premiums, deductibles and out-of-pocket expenses. In 2016, we awarded more than $169.8 million in grants through our Disease Funds, and since 2004 we have helped more than 320,000 patients afford essential treatments and medications. HealthWell is recognized as one of America’s most efficient charities — 100 percent of every dollar donated goes directly to patient grants and services.

    We provide financial assistance to help with:

    • Prescription copays
    • Health insurance premiums, deductibles and coinsurance
    • Pediatric treatment costs
    • Travel costs

connect