Wayne Eskridge commented on Clinical Trial, Call for participants, fructose overfeeding 2018-02-18 17:16:43 -0700For anyone interested in fructose, here is another link http://www.fattyliverfoundation.org/nash2/fructose_quiet_killer
Wayne Eskridge posted about When HE, hepatic encephalopathy, steals your mind on Facebook 2018-02-17 10:42:03 -0700When 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.
@LiverSaver tweeted link to All I want is to let him die in peace, why do they make it so hard?. 2018-02-10 09:47:25 -0700All I want is to let him die in peace, why do they make it so hard? http://www.fattyliverfoundation.org/nash2/all_i_want_is_to_let_him_die_in_peace_why_do_they_make_it_so_hard?recruiter_id=221
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.
Wayne Eskridge published research shows fibrosis can heal in Foundation BLOG 2018-01-29 12:03:31 -0700
Clinical trials are important. We support them because they are the only way to get treatments that work. I recently took 5 members of my family to Dr. Rohit Loomba's, a world renown liver specialist, lab at the University of California San Diego where we participated in a study seeking a genetic basis for familial liver disease. The goal is the find out what role DNA plays in the development of liver disease. If you are interested in learning more, click on the link below. If your family seems to have liver disease you might check it out.
One of the side benefits of participating in trials is that you get great testing and care. In fact, people who are part of a trial do better than the average patient even if they get the placebo because they are monitored closely, but that is a discussion for another time. For now a key fact to understand is how dangerous liver fibrosis/cirrhosis is. We measure that as the hazard ratio or how likely you are to die compared to a "healthy" person. In this chart you can see that with stage 4 you would be 10 times as likely to die as someone who is healthy.
As part of this research study I had the opportunity to get new tests of my liver health. My personal study experience began January of 2015 when I was diagnosed with cirrhosis following NASH. At that time I had a fibroscan test which gave me a fibrosis score of 21.5. That isn't meaningful for most but typically any reading over 12 is considered cirrhosis. It was a bit like one of those movie dramas where the doc says sorry you have a terminal illness and there is nothing we can do. A 3 Kleenex moment for sure.
Cirrhosis has no medical treatment and progresses to end stage liver failure and/or liver cancer which results in a long unhappy journey to meet the MAN if you can't get a transplant.
There is, however, one non-medical treatment which is to stop eating things that kill your liver. Since I wasn't inclined to meet the MAN just then, I decided to try that. It was interesting to learn that there are hundreds of different "experts" telling you what to do to fix your liver. Fortunately there is research that points to a reasonable way to go so I became part of a longitudinal, that means spanning years, study to see what effect a research defined healthy lifestyle and dietary change could do for my liver. If the details interest you here is a link to a discussion of diet.
OK, long way around, but at the UCSD study I got updates on my liver status. Remember this is 3 years since my diagnosis with cirrhosis. Today my fibroscan score is 9.6. What does that mean you might ask? Remember that first test of 21.5 was well into the cirrhosis category. A 9.6 is a stage 3 disease which means that my liver has improved significantly. This chart shows what has happened to the staging of my disease over time. If you remember the hazard ratios above, it suggests that I am about 1/3 as likely to die this year as when I started this.
What does that mean to you? For starters, it is absolutely not true that there is no treatment for fibrosis. There isn't a pill you can take for it - yet. But if you eat right, exercise, and lose weight, your body will try to heal. One of the key dietary messages is to make oleic acid, the omega 9 oil found in extra virgin olive oil, the main source of fat in your diet. Here is a discussion of olive oil that you may find of some value.
It is a lot of information, but if you really are going to change your lifestyle, you can only do it successfully if you have clear goals and understand why what you are doing is important. We hope this information is of value to you or is something you might share with others who might find it useful.
On a broader front, the foundation is working toward our goal of creating screening centers to provide early detection of liver fibrosis, before you have any symptoms, and to help you not have to face end stage liver failure. Here is a link to some information about that program.
We hope you are well.
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.
Wayne Eskridge commented on NAFLD diet 2017-11-20 19:18:45 -0700Hi Leah, it is a complex condition. Generally the doctor is correct but there are people who stop the progression and a few are able to get some reversal of the fibrosis. In your case with PBC it is more complicated but diet is your best defense as it makes it easier on the liver capacity that you have.
Wayne Eskridge posted about Cirrhosis, Now Linked to NAFLD, Presents Management Challenges on Facebook 2017-08-23 19:54:24 -0600Cirrhosis, Now Linked to NAFLD, Presents Management Challenges
Does this surprise you? A study in Gastroenterology showed that in 2013 NAFLD became the second leading liver disease among adults waiting for a liver transplant. “From 2004 to 2013, NAFLD as an etiology of liver disease for new transplant waitlist recipients increased by 170%
Chalasani said cirrhosis itself is not difficult to diagnosis in most people, as diagnosis is based on blood work, a physical work-up and cross-sectional imaging such as liver ultrasound or CT scan. Occasionally, though, a liver biopsy may be warranted.
FibroScan (Echosens) is a new technique that helps manage patients with chronic liver disease and cirrhosis. “This is point-of-care testing that can be done in the clinic by non-physician technicians,” Chalasani said. The scan provides both a liver stiffness score (a marker of liver fibrosis) and a controlled attenuation parameter (AP) score (an estimate of liver fat quantity). “The higher the scores (eg, greater than 14-15 kPa), the more likely an individual has cirrhosis,” he said.
Janardhan said that by removing the source of the inflammation that leads to scar tissue formation in the liver, some of the scar tissue might get better. “However, there is a point of no return,” he said. “When a patient develops decompensated cirrhosis, it is very difficult for that liver to improve to the point where the liver can completely repair itself.”
Janardhan said the 10-year survival for a patient with compensated cirrhosis, and who remains in a compensated state, can be up to 75%. “This pales in comparison to a person with decompensated cirrhosis, for which the survival rate is less than 25%,” he said.
This is a fairly long article but worth your time if you are interested in liver disease as I've written here in multiple posts.
Wayne Eskridge published Why olive and not flaxseed as a primary dietary oil in Foundation BLOG 2017-07-15 08:45:13 -0600
A member was asking about why we didn't use lots of flaxseed oil instead of olive and why use coconut at all since it is so saturated. This chart illustrates the fact that all of our oils are a mixtures unless they are specially processed.
There is a lot on advice on the internet about supplementing with omegas 3 as lots research supports its value. Many are also advocating the use of coconut oil. A few comments about the differences came out of that discussion so I thought I'd pass them along here.Read more
Wayne Eskridge published Cirrhosis Could Double Stroke Risk in Foundation BLOG 2017-06-09 11:41:42 -0600
Average yearly rate of the attacks doubled in people with the liver disease
From Cornell -- Cirrhosis -- a stiffening of liver tissue that's often tied to excessive drinking of alcohol -- may also raise an older person's odds for a stroke, a new study suggests.
"In a nationally representative sample of elderly patients with vascular risk factors, cirrhosis was associated with an increased risk of stroke, particularly hemorrhagic stroke," wrote a team led by Dr. Neal Parikh, of Weill Cornell Medicine and New York-Presbyterian Hospital in New York City.
Hemorrhagic or "bleeding" stroke comprises about 13 percent of strokes and occurs when a blood vessel ruptures, according to the American Stroke Association. The majority of strokes (87 percent) are ischemic -- meaning they are caused by clots.
In the new study, Parikh's team tracked 2008-2014 data for more than 1.6 million Medicare patients older than 66.
The research showed that while just over 1 percent of people who did not have cirrhosis suffered a stroke during the average year, that number jumped to just over 2 percent for people with the liver disease.
The study couldn't prove that the cirrhosis actually caused any of the strokes. According to the authors, possible explanations for the association between cirrhosis and increased stroke risk include impaired clotting ability. Or, patients' heart risk factors may be exacerbated by cirrhosis and the underlying causes of cirrhosis, such as alcohol abuse, hepatitis C infection and metabolic disease, they said.Read more
Wayne Eskridge published Terminal illness from a doctor's perspective in Caregiver Stories 2017-06-04 18:42:48 -0600
The caregiver journey often ends attending a loved one through the death vigil. It isn't something that we do everyday and for most it is a life affirming or life altering experience. Rarely do we wonder how the professionals that attend to deaths everyday think about the process.
I happened to read a very perceptive piece by Dr Jeremy Topin who wrote in his personal blog, www.jtopin.wordpress.com, about a particular patient. I'll include an excerpt here but recommend reading his entire article.
Mrs. Valentine’s family waits for me in the ICU. The overnight nurse has already filled me in on the evening’s events. The family has come to a unified decision and they have called friends and loved ones from near and far. Their mom has been on the ventilator for six days and continues to get worse. Her pneumonia and kidneys are the most urgent problems, leaving her dependent on a ventilator and dialysis. But underneath the surface, her lung cancer is the real culprit. What started as a time-limited trial to see if her lung infection could get better, had now run its course. The family knows we are no longer helping her to live; we are prolonging her death. This is not what she wanted.
Wayne Eskridge commented on Fatigue, the lifesucker that will stalk you if you become ill 2017-05-10 09:19:21 -0600This discussion deals with how fatty liver patients might deal with fatigue. It would not do to imply that this is the only source of fatigue. For example, with a badly inflamed liver it will increase tumor necrosis factor and interleukin 2. Both of those will make you feel tired and lousy. All medical issues are multifaceted, but the advice in the blog post does apply to life and overlays any other medical issues.
Wayne Eskridge commented on Albumin treatment improves overall survival for decompensated cirrhosis patients 2017-04-23 09:21:53 -0600Given that production of albumin is one of the most important functions of the liver. You would think this would be standard therapy already. Puzzling.
Serum albumin is the main protein of human blood plasma.7 It binds water, cations (such as Ca2+, Na+ and K+), fatty acids, hormones, bilirubin, thyroxine (T4) and pharmaceuticals (including barbiturates): its main function is to regulate the Oncotic pressure of blood. Alpha-fetoprotein (alpha-fetoglobulin) is a fetal plasma protein that binds various cations, fatty acids and bilirubin. Vitamin D-binding protein binds to vitamin D and its metabolites, as well as to fatty acids. The isoelectric point of albumin is 4.9.
Wayne Eskridge commented on Fibrosis Screening Project 2017-04-22 09:53:14 -0600100 million people have fatty liver disease our plan for a mobile service will help support #idahogives
Wayne Eskridge commented on supplements 2017-04-19 21:17:35 -0600Hi Dawn
Beyond the quality control issues of the supplement industry, liver patients need to remember that everything that goes into their body must go to the liver. There are so many chemicals in herbals that we simply don’t know much about that if your liver is sick supplementation is an expensive game of Russian Roulette.
Wayne Eskridge posted about Experts by Experience from Inspire.com - patient stories that inspire on Facebook 2017-04-19 17:36:51 -0600Experts by Experience from Inspire.com - patient stories that inspire
The “Experts by Experience” series are special reports by Inspire developed in cooperation with Stanford University Medical School. Each compilation is comprised of a year’s worth of monthly columns written for Stanford Medicine’s “Scope” medical blog.
In “Experts by Experience 2017,” patients and caregivers affected by such diseases as stomach cancer, bladder cancer, scleroderma, Ehlers-Danlos Syndrome, lipedema, sarcoidosis, share their experiences and insights.
If you are here, you or someone you care about is ill, or is obese and at risk for liver disease.
This is what you will find here:
- Non-technical explanation of how your body actually works
- How the liver develops disease over time
- Why fats are a critical source of fuel for your cells
- How the liver manages triglycerides
- How the course of fatty liver disease depends on triglycerides and carbohydrates
- How the kind of dietary fat you use matters
- Information by a liver patient for liver patients
- Information about diet based upon bio-chemistry not fads
We are a nonprofit foundation and we do not represent anyone but the patient. If you are looking for advice on supplements or quick fixes this is not the place for you. We offer extensive information about the body in general, the liver specifically, and we recommend lifestyle strategies that have worked for me specifically and which I believe are valuable for anyone concerned about liver health to be familiar with.
This site offers you extensive opportunity to add your own comments and experiences to the pages. We invite you to add your own thoughts if you would like to. Patient and caregivers stories are especially helpful to other sufferers.
For any non-profit foundation the support of the community is really life and death. We depend upon people who believe that our efforts are of value. We greatly appreciate the support of everyone who helps us. Sponsors are those people and groups who provide help above and beyond just believing in our cause. If you would like to be a sponsor please contact us.
Donations can be made as money or "in kind" and both are very valuable to us. In Kind is any good or service which furthers out goals and serve our community and everything helps.
Our first and perhaps most important sponsor was Echosens, the makers of Fibroscan, which we believe can save millions of patients from the misery of liver disease. Most of the 100 million Americans who have fatty liver disease and don't know it can manage the problem without ever becoming ill so long as they take action before serious damage is done. Fibroscan gives us the ability, for the first time, to detect advancing fibrosis at an economical price before there are any symptoms. So we greatly appreciate the support from Echosens. Click the links below for info on sponsors.
Fatty Liver Foundation organizer
As a liver disease patient my goal is to help others understand, manage, or prevent the disease