Wayne Eskridge published NASH - Swiss Army Knife of Death in Voices - our blog 2020-10-29 10:31:26 -0600
ARE YOU A PATIENT LIVING WITH NAFLD/NASH OR HEALTHCARE PROFESSIONAL CARING FOR NAFLD/NASH PATIENTS?
Welcome to Fatty Liver Foundation’s LIVER (Live Interactive Virtual Education and Review) Webinar Series. This four-part webinar series will deliver the latest research and medical information, including lifestyle/diet, testing and treatment, to people living with non-alcoholic fatty liver disease (NAFLD) and non-alcoholic steatohepatitis (NASH) and their medical providers. Our goal is to keep the patient community up-to-date on medical research and to build an archive of the important historical evolution of the field.
Join us for part-two of this webinar series on October 28, 2020 at 12:00 pm EDT hosted by Wayne Eskridge, our Co-Founder and CEO, along with Dr. Neeraj Mistry, our Chief Medical Officer, and a panel of leading clinicians and experts featuring Drs. Manal Abdelmalek, Amreen Dinani, and Arun Sanyal who will review and discuss highlights from the 6th Paris NASH Meeting 2020 and answer your questions.
12:00 pm – 12:10 pm
WELCOME AND INTRODUCTION
Host – Wayne Eskridge, Fatty Liver Foundation
Moderator – Neeraj Mistry, MD, MPH, Fatty Liver Foundation
12:10 pm – 12:30 pm
SESSION 1: LIFESTYLE AND DIET
New Data on Lifestyle and Dietary Interventions in NAFLD/NASH Management
Presenter – Amreen Dinani, MD, Icahn School of Medicine at Mount Sinai
Q&A – Neeraj Mistry, MD, MPH
12:30 pm – 12:50 pm
SESSION 2: TESTING
Advances in Non-Invasive Biomarkers for Diagnosis and Monitoring of NAFLD/NASH
Presenter – Arun Sanyal, MD, Virginia Commonwealth University School of Medicine
Q&A – Neeraj Mistry, MD, MPH
12:50 pm – 01:10 pm
SESSION 3: TREATMENT
Update on Investigational Drugs and Therapeutic Targets for NAFLD/NASH
Presenter – Manal Abdelmalek, MD, MPH, Duke University
Q&A – Neeraj Mistry, MD, MPH
01:10 pm – 01:15 pm
REFLECTIONS AND TAKEAWAY POINTS
*Subject to change. This educational program is supported by grants from Intercept Pharmaceuticals, Madrigal Pharmaceuticals, and NetNoggin. Fatty Liver Foundation maintains editorial control and independence over the educational program content.
Wayne Eskridge published Gabriella Wan joins the Fatty Liver Foundation in Press 2020-10-12 15:41:00 -0600
BOISE, IDAHO (October 13, 2020) — Fatty Liver Foundation today announced the appointment of Gabriella A. Wan as Executive Assistant and Program Coordinator effective October 9, 2020. Gabriella will provide administrative support of the CEO’s office and program coordination of the executive leadership team.
Gabriella joins the Fatty Liver Foundation from Georgetown University Department of Global Health where she served as Research Assistant with a focus on health economics and financing. She previously served as Administrative Assistant at Georgetown University Graduate School of Arts and Sciences where she provided administrative support to the Deans’ Offices.
Gabriella received a Bachelor of Science in Global Health and a Master of Science in Global Health from Georgetown University. She also participated in the School for International Training (SIT) Honors Program where she engaged in field-based global health programs in Washington, DC, Vietnam, South Africa, and Argentina.
“We are thrilled to welcome Gabriella to the team,” said Wayne Eskridge, Co-Founder and CEO of Fatty Liver Foundation. “Her new role is essential for supporting the growth of our operations and programs as well as advancing our mission to identify and educate people who are at-risk for NAFLD/NASH or living with NASH.”
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THE PROBLEM: The real liver experts don’t offer effective diet advice
Currently, the experts who treat liver disease, (the specialists of AASLD), do not officially recommend any specific diet for liver health. The reason is because there are not enough well-designed dietary clinical trials focused specifically on the liver to give the organ experts confidence to make official dietary recommendations. This creates a serious dilemma. As patients we don’t have that luxury. We must make choices. We must live every day making food decisions and hope that our diet is a healthy one even if the experts can’t help us. No wonder we see endless variety in dietary advice and “experts” of all persuasions.Read more
OUR GOAL: Design a diet strategy that minimizes the liver workload
THE PROBLEM: The liver experts don’t offer effective diet advice
Currently, the experts who treat liver disease (AASLD), recommend no specific diet for liver health. There are not enough well-designed clinical trials focused specifically on the liver to give the organ experts confidence to make official dietary recommendations. This creates a serious dilemma. As patients we don’t have that luxury. We must make choices. We must live every day making food decisions and hope that our diet is a healthy one even if the experts can’t help us. No wonder we see endless variety in dietary advice and “experts” of all persuasions.
THE GOAL: Design a diet strategy that minimizes the liver workload
The Fatty Liver Foundation recommends a diet high in oleic acid (omega 9) unsaturated fat (30%), primarily from extra virgin oil, low in saturated and trans fats (7%), with a omega 3 and 6 fatty acids approximately equal (8% each). Protein is about 20% of calories and carbohydrates are primarily in the form of fruits, non-starchy vegetables, and whole grains (27%). Simple carbs, such as sugars and refined grains, are minimized. The goal for salt intake is about 70% of the USDA recommendation. Processed foods and red and processed meats are avoided. (see this pdf for the research supporting this strategy)
Nonalcoholic fatty liver disease (NAFLD) affects approximately one third of adults in the United States and is the most common cause of chronic liver disease worldwide. About 20% of patients develop the more serious steatohepatitis (NASH) which is becoming epidemic as a result of the rising rates of obesity and metabolic disease. Emerging data suggest weight loss of greater than 10% of body weight is beneficial in resolving steatosis and reversing fibrosis due to NASH.
The liver disease specialists don’t have enough proof that they are willing to endorse a specific diet, so keep that in mind as you listen to the sales pitches. There are thousands of claims about food. Here we are trying to give you the most complete picture that we can, but just remember, if someone is selling you something, they have an agenda and real evidence is hard to get.
As patients where do we look for dietary guidance?
We understand the challenge for science to provide specific and verifiable data, but as patients we still have to live each day and we make decisions about our diet by making use of whatever information is available to us. We also must live within the cultural and food availability situations that we find ourselves.
It is very difficult to do effective random, blinded, controlled trials (RCTs) of the diets of humans. There are myriad ethical and cultural concerns with human experimentation and the human diet is vastly complex within different cultures and practices. In our role as the voice of the patient, we believe that a position of offering very limited guidance is inadequate so we are providing this information as a patient resource for those who seek to understand the components of diet and available research which we believe offers a coherent view from which to make decisions about diet. The goal of our lifestyle strategy is not to diet but to adopt habits that are fundamentally healthy long term and probably contribute to a healthier liver and a better life.
Making the best choices we can with the information we have
A lifestyle that is fundamentally healthy is built on a vast series of small choices made each day over a lifetime. It is a pattern of behavior based upon choices which are, on average, neutral to healthy while minimizing ingesting things that compromise function. There is no one size fits all solution. Human metabolism is quite robust and is able to accept a wide range of inputs and to use them to sustain bodily functions.
In our role as a supporter of people concerned about liver health, our goal is to support a lifestyle which minimizes the work that the liver must do to sustain our lives. Conceptually, when any of the parallel processes taking place within a liver cell is either oversupplied with or denied those dietary elements that it needs to maintain a stable response we have failed in that goal. In making decisions about food, the goal is stability of function, stability of supply, and minimizing toxins. A sick liver benefits from a strategy of making it do as little work as possible.
Talk to your doctor
All patients should discuss dietary strategies with their doctor. This information cannot substitute for guidance by your physician. This material provides research-based information that will help you better understand your doctor’s advice but cannot be relied upon for personal health decisions. Information is critical to help plan and implement a strategy to adopt lifestyle change but there is no single solution to decisions about diet and this information is therefore incomplete and may well be proven to be incorrect as research is performed in the future. This discussion provides information from a health perspective broadly which can inform choices about what constitutes a liver supportive diet. A broader benefit is that this approach provides a holistic regimen which benefits many co-morbid conditions such as diabetes and cardiovascular health as well. In many ways, what is good for the liver is beneficial for the body as a whole.
It is important to remember that your doctor may have little nutrition education. We rely on them, but many are unprepared to really help us with diet decisions. Current medical education does not provide much focus on the issues of diet. This paper contains references to research which we have relied upon in developing it so you may be able to use it to engage your physician in the science argument about various aspects of diets. The material presented is not exhaustive or necessarily authoritative but is a coherent way to approach the lifestyle challenge.
Wayne Eskridge published COVID not the only game in town in Patient Stories 2020-09-19 19:03:38 -0600
As I write this I see the covid numbers are rising again. I hear people in denial, it could never happen to them. Today I have something equally life threatening to write about. It is not about Covid. It’s about ANOTHER little recognized epidemic. I lived it. I will be very happy if this resonates with just one person.
Here’s my story.
Christmas Eve 2013, I was feeling pretty proud of myself. I was on my way to a healthier life. Earlier in the year I joined my local YMCA. I exercised 6 days a week. I was eating healthy and watching calories. All in an effort to lose weight. I had been overweight since I was a child. Smaller clothes was just a small part of why after 30 years I was losing weight. Feeling good was a great reason but what gave me real motivation was the fact I wanted to be a living kidney donor for a family member. I had lost 96 pounds in 7 months. Then I woke up with what I thought was the flu. By evening I thought I was doing better. When I got sick and vomited up a huge amount of red blood. I found myself in my local ER where I was literally bleeding to death with no clue why. I was taken to the back where I was still very much awake and scared to death.Read more
Wayne Eskridge published COVID infections, What diseases make you the most vulnerable, New data in Voices - our blog 2020-09-19 11:44:39 -0600
Comorbid conditions increase the risk of being infected with COVID. We hear that all the time but what does it really mean? A study was just released that provides some very important insights. Here is a chart showing the odds ratio, that is a measure of the relative risk compared to a healthy person. Look closely. This is important. Note that NASH is over 14.
Broadly, these are the elements of metabolic syndrome and fatty liver disease.Read more
Did you know that 20,000,000 Americans don't know they have asymptomatic liver disease?
Did you know that disease called COVID-19 is caused by the virus SARS-CoV-2?
Did you know that COVID-19 or SARS-2 is more dangerous to society than SARS-1.0 which hit in 2003 and killed 9.6% of those infected?
Did you know that if you have advancing fatty liver disease without any symptoms your risk of death from SARS-2 is higher than average?
I have some concern about writing this. When we face a crisis, panic and reactions driven by fear can do great harm. I do not wish to contribute to that, however, as an advocate for people faced with chronic illness, such as liver disease, I feel compelled to inform my community about the details.Read more
Post 8: Shame and Cirrhosis
For most people, the diagnosis of a serious, life-threatening, chronic disease is a very scary experience. But after getting that type of news, most people are able to gather comfort from friends, family, sometimes even strangers. When they tell those friends, family, and strangers about their diagnosis, the first reaction people usually give is a hushed, “Oh, I’m so sorry to hear that.” That might be followed by a hug; A comforting word or prayers; An offer of help, support, or advice; But with cirrhosis, sharing our diagnosis with others is often, sadly, a drastically different experience.
After the unexpected shock of learning that I had cirrhosis in 2016, I quickly learned to recognize the signs and symptoms that meant I needed to call my doctor. I learned to recognize which foods and drinks had hidden sodium in them as just one example of what I needed to know. Unfortunately, I also learned to recognize “The Look.”
I would guess that every single patient who has been diagnosed with cirrhosis knows “The Look.” It’s so common for me, that it could almost be comical, if it didn’t regularly make me feel so defeated.
The first time I experienced “The Look,” I didn’t even actually see it. My mom had taken on a part time job as a waitress, to help cover my mounting medical bills when I had to stop working. Her regular customers knew that I’d been getting seriously ill over the past 9 months. After I had a diagnosis, she finally had answers to give when people asked how I was doing. But when she told people that I’d been diagnosed with cirrhosis, instead of the comforting words or sympathetic understanding that she’d expected from customers that she considered friends – customers who knew me – she heard things like, “Oh, I’m sorry, I didn’t know she was an alcoholic.” Or a blunt, “How much did she drink?” Almost accusatory statements, with a look that said this news was unfortunate, but that obviously cirrhosis is a disease that I caused myself. She was shocked! She’s been a caretaker for many people over the years, and had never encountered responses like this.
I quickly realized how few people understand liver disease. The first thing anyone thinks of when hearing the word “cirrhosis,” is alcoholic. Every time. A few people, especially older people, also associate it with Hepatitis C. Absolutely no one I’ve ever met has heard of things like hemochromatosis, Wilson’s disease, or autoimmune hepatitis. Very few people have even heard of fatty liver, or NASH. Everyone just thinks of cirrhosis as a disease for old men who’ve spent their years chugging away on a whiskey bottle.
I learned to expect this reaction from “regular” people. Because I had to admit to myself that I didn’t know any of these things either, before my diagnosis. So, as weary as I started to get, when time after time I’d get that look, that was part accusing and part pity; That look that said, “Oh, I’m so sorry, but it’s your own fault, you know…” - I tried to be understanding, and continue patiently explaining that cirrhosis is the end stage of a process of damage to the liver, that the damage can come from over a dozen different causes, that everyone with cirrhosis isn’t an alcoholic, and that even if they DID get cirrhosis from alcohol use… does that really even matter much?
What I didn’t expect was to continue getting this type of uninformed reaction from people in the medical community. My primary care doctor wouldn’t even believe me that my cirrhosis wasn’t related to alcohol, until he had written confirmation from my out-of-town hepatologist. I dread going to the ER, because it always, always starts with “The Look.” I’m in a room, lying on a bed, the nurse comes to do vitals, and get basic information. They ask for a list of known health conditions. When I get to liver disease, there’s an abrupt change of tone as they ask “What type of liver disease?” I take a deep breath, and say, “Cirrhosis.” Then, The Look, and the same question, without fail, every single time: “From drinking?” They never ask something less loaded, such as “Do you know the cause of your cirrhosis?” It’s just always this sudden shift in their opinion of you, that look that says “Oh you’re one of those people,” and an instant judgement call that whatever problem you’re being seen for that day – even if it’s not related to liver disease at all – that it’s probably something else that you yourself have caused; from bad judgement, poor moral character, unhealthy choices. The Look tells you that you’ve been judged and found lacking. Even when I tell them that my cirrhosis diagnosis has nothing to do with alcohol, they give each other a “That’s what they all say” look, and continue asking things like how much I drank, do I still drink, when was my last drink? At first, I thought maybe this was just me being paranoid, born of the frustration at explaining a confusing diagnosis. But everyone else in my family has seen it too. And I’ve heard the same story from so many other patients. It’s incredible, how pervasive and consistent it is.
This attitude, this idea that cirrhosis patients deserve their disease, the look of shame that we get when we say our diagnosis out loud – I know that many, many other patients feel a stigma from this too, which discourages us from speaking up about our illness. It causes us to keep quiet about our diagnosis, often suffering in silence instead of asking for help from our friends and family. But it also causes us to be less pro-active with our own healthcare, shamefully stuffing down our questions, when our doctors treat us as though we are to blame. Because, I think that most people who face a life-changing disease of any type have a moment or more, where they wonder what they did to deserve this fate? Was it skipping the gym and regular checkups, or was it overindulging in foods or drinks? This makes it even easier to fall for the shaming you get from your friends, family, neighbors, and even doctors.
Sometimes I don’t know how it can be true, that here I am, living with a serious chronic disease that has the potential to kill me. Even on the good days, that knowledge adds a heavy weight to my life. Yet… My life is still beautiful. Because each day, with purpose, I create a life that’s beautiful. But oh, my… How much more beautiful life could be, if I didn’t have the added weight of “The Look,” and the unnecessary stigma attached the word cirrhosis. Which is why I’m beginning to work so hard to change that.
Wayne Eskridge commented on Science Behind Diet 2019-09-19 12:33:29 -0600Hi Lorrie
The saturated fat amount is a matter of which bucket you are talking about. EVOO of 10% fat contributes about 50 calories. The 7% figure is for the total calories per day of 1500 to 2000 so it assumes other source of saturated fats but kudos to you. Most people don’t recall that EVOO does have some saturated fat in it.
Wayne Eskridge commented on Liver damage and CBD oil 2019-09-15 09:25:30 -0600Hi Nicole, a lot of people want THC to be harmless, and to be fair, it is much less addictive that nicotine as one example. For reference her is a comment from NIH
“Is marijuana addictive?
Marijuana use can lead to the development of problem use, known as a marijuana use disorder, which takes the form of addiction in severe cases. Recent data suggest that 30 percent of those who use marijuana may have some degree of marijuana use disorder.”
There is a grey area between dependence and addiction that popular culture largely ignores but people with liver disease should always be cautious.
Wayne Eskridge published NASHday was an uncommon event, do you know why? in Voices - our blog 2019-06-15 20:48:27 -0600
Since you are on my mailing list you know about NASH, unlike most of the people. We had the 2019 version of NASHday on the 12th and as I think about how that event went I am struck by the fact that as a health outreach it was unusual.
I'll explain why but first, the punchline, NASHday was about people's lives and not about money.
We have every kind of "DAY" that you can think of. Every cause has a day or a month, some peg to hang the cause on and to focus attention. Just as an example, these are the top five unofficial holidays according to toptenz.net.
1. Black Day.
2. Autistic Pride Day.
3. International Free Hugs Day.
4. Monkey Day.
5. Record Store Day.
This page loads slowly. It is a series of videos about NASH, be patient if you are interested in a good explanation of this disease.
Wayne Eskridge published Do you ever think about the death of self? in Voices - our blog 2019-05-27 15:01:34 -0600
About one million Americans have cirrhosis and don't know it. When they are told "You have cirrhosis, I'm sorry but we have no treatment", the future that they imagined lay before them dies. It is, in a very real way, a death of self.
We all know that we will one day die but we hold a sense of how we think or hope our future will unfold. There is a continuity that flows with the preceding events in our lives as a single journey. If you have no warning, as so many liver disease patients do not, and your first information is that you have cirrhosis, a probably terminal illness, the self that you have known dies. The life you thought you were living no longer exists and a new unbidden and unwanted future is before you and you must find a way to reconcile yourself with that new reality.Read more
I was diagnosed with cirrhosis in May of 2016. It had been a rough year leading up to diagnosis – almost 9 months of repeated hospital stays, filled with countless tests and procedures, before the confused doctors here in my city transferred me in an ambulance over to Seattle. They put me under the care of an awesome hepatologist, who was finally able to figure out what was wrong with me. I will forever be grateful to the team there, for caring about me while caring for me, during the scariest time of my life.
During those months before diagnosis, I’d lost over 70 pounds off of my average-sized frame. It started slow, then sped up faster and faster, until muscles had wasted away. My pants literally fell off of my body, and I was so skin-and-bones emaciated that it hurt to take a bath. I could feel every rib and hip bone and every point of my spine, as they creaked against the hard sides of the tub without any fat left to cushion them. It really hit me how much weight I’d lost when I went to an appointment at the hospital. They had to find a child-sized blood pressure cuff, because the adult one was too big to get a reading off of my skinny arm.
Eventually, after being diagnosed and having a good team of doctors to guide me, I slowly started to feel alive again. My head began to clear a bit of the fog, I started to gain a little bit of strength, and was anxious to create a “new normal” in my life. But as I reflected on what I’d been through to get to that point, and wondered what life would be like now, I realized that I barely recognized the girl looking back at me in the mirror.
I had lost almost a year of my life, spending too many nights in lonely hospital rooms, and barely getting out of bed in between those stays. But when I looked at my reflection, it appeared that I’d lost so much more than that. My face was hollow, and there were so many new lines and wrinkles. The dark circles under my eyes were matched by the dark bruises that mysteriously popped up every day.
For me, the very worst was my hair. I’d always loved my hair – I kept it very long, it was full and bouncy and thick. I was known for my long wild “mermaid” hair. But after the severe malnutrition I suffered during my fight with liver disease, my hair was unrecognizable. It started before diagnosis – for months, as I got sicker and sicker, I started neglecting self-care more and more. I was so exhausted that I could barely get out of bed, and showering was near impossible. I stopped even brushing my hair, and it became a huge tangled mess. During my hospital stay, a doctor realized how bad I looked, and requested that the nurse clean me up before the ambulance came in the morning to take me to Seattle. She grew impatient, trying to comb it out, and asked me if it was alright to just cut it off? I wasn’t very coherent at the time, but I’m forever a people-pleaser, so I agreed.
A couple of days later, showering at the new hospital in Seattle, I realized that she’d cut 5 inches off of my hair. Let me tell you, losing 5 inches to a nurse with office scissors is nothing like losing 5 inches in a salon. Weeks later I was able to go home again, and made a new discovery – the rough patches that I’d been feeling on my scalp? That was stubble, where hair had fallen out in patches, and was starting to grow back. Needless to say, my old hair, a defining feature, was gone. I spent over a year wearing it in a ponytail to cover some of the damage and loss. Every time I would cry over the loss of my wild waves, I felt so silly and superficial, worrying over such a small thing, in the midst of so many other life-threatening syndromes and symptoms. I think sometimes it’s easier to push aside the reality of what has changed on the inside of your body, than the changes that happen on the outside. Those outer changes are, quite literally, staring you in the face.
It wasn’t just the changes to my face that I had to face. The physical changes went from my head to my toes. I’d lost so much weight that I was all bony hips and elbows. At the same time, I’d regularly balloon up in the middle as my belly filled with ascites fluid. My primary care once callously remarked that I resembled a beach ball, with sticks-arms and legs poking out. Strangers stopped me every time I went out, to rub my belly and ask when I was due. It was devastatingly embarrassing. Other times it was a different type of swelling, with extreme edema in my legs and feet, so that sometimes I couldn’t leave the house because none of my shoes would fit my swollen feet.
Self-love is a hard thing during even the best of times. Trying to adjust to the changes that chronic illness brings is far harder, and it’s complicated by the fact that it’s an ever-changing battle. You gain and lose weight, as your muscles waste away or your body retains water, and the proportions of your body fluctuate wildly, sometimes daily. When you are battling a deadly disease you are always remembering that you’re lucky to be alive. Focusing on trivial matters like new wrinkles or swollen feet or thinning hair or all three on the same day – those are the least important of your worries. Yet, those things DO matter.
I’m learning to love my body again, in all of its shapes and sizes, not in spite of my disease – but because of it. Cirrhosis is one heck of a beast to fight, yet somehow, this battle-scarred body of mine is still fighting and winning.
I once looked online for the actual definition of cirrhosis, and there was a line that stood out to me - “Cirrhosis changes the structure of the liver and the blood vessels that nourish it.” I realized that line described more than just what cirrhosis does to your physical self – it also describes what it does to your mental well-being. Cirrhosis changes the structure of your whole life and the relationships that nourish it.
During a health crisis, people are usually quick to rally around you. They offer words of support, bring flowers to the hospital, and bring meals to you at home after you’re released. But cirrhosis can be a hard disease for people to continue supporting you through. After an initial crisis, I didn’t “get well soon,” as so many people encouraged me to do. And since cirrhosis is a disease that very few people understand, they don’t know how to support you. Unlike cancer, there is no treatment or an end goal of a cure. It’s just an exhaustingly unpredictable road of better and worse and then better again. After a while, I think friends and family get confused, or beaten down, when they never get the answer they want to hear when asking if you’re “better” yet. They yearn to go back to normal, to have your relationship go back to its familiar structure. But once you have a cirrhosis diagnosis, life eventually finds a “new normal,” – but it never goes back to the way it was.
The first big blow was when my daughter’s dad left, after 11 years together. He didn’t leave just because I was sick, we’d had a history of struggles. But visiting me in hospitals, over and over, watching the girl he fell in love with, who ran her own business, loved to socialize and travel, who was full of life and adventure– watching me turn into someone who was bedridden, couldn’t work, couldn’t do much of anything at all for a while, seems to have been too much for him. I hear often from caregivers that taking on that role with a partner changes their dynamic so much. Most people take their vows seriously, in sickness and in health, and would never dream of leaving. Yet, their role as caretaker begins to overwhelm all of the other parts of their relationship. It sometimes leads to your loved one seeing you as a patient, instead of their partner, which can really drive out the romance that brought you together.
Friendships will change too. Cirrhosis is a lonely disease, in so many ways. It comes with a stigma, of people judging you as a druggie or drunk, even if that isn’t the path that took you towards your diagnosis. Educating people on the many varied ways that people can have cirrhosis, explaining what NASH is, or informing them of the genetic or autoimmune diseases that can lead to cirrhosis, is just often too exhausting. And after a while, it starts to make you feel “other.” It’s hard to relate to your friends and their lives, once you can no longer participate in the things you used to do with them, go the places you used to go, or even have the energy to keep up with them. You drift apart from more and more people, at a time of life when you need their support the most. Your friends continue on a path that you no longer can travel with them.
Luckily, I’m blessed with an immediate family that is the absolute best. They see that I’ve had to change my life drastically to accommodate my diagnosis, and they do so much to keep me afloat. They pitch in help when I need it, they willingly have more family events at my house where it’s easiest for me attend, and they are super understanding when I’m unable to go to events I’ve been invited to. And that helps, so much, having at least a small circle of understanding around me.
The other thing that has helped, has been building an online support network. It took me awhile to really accept that I had woken up sick one day, and wasn’t ever going to get better. I didn’t want to identify with my disease, because I didn’t want to ACCEPT my disease. But once I did, I started searching out other people like me. Other patients. People who would “get it.” Where I didn’t have to explain what living with a chronic illness was like. Where I didn’t feel like such an outsider. I first found that community in Facebook support groups for cirrhosis patients. Then I started searching out other chronic illness patients living with different types of disabilities and diseases on Instagram and Twitter, where I could see examples every day of people living their best life in spite of scary diagnoses. And these people, most of whom I’ve never even met, have been my lifeline during my hardest days.
The other person who has been a lifeline, my sunshine when I need it the very most, is my daughter. She was only 6 when I was diagnosed, she’s 8 years old now. After her dad left, my health went downhill quickly, right as she was starting kindergarten. That was a heck of a lot of changes for such a little girl to go through. It hurts my heart, that she feels like she has a caregiver role in my life, when it’s ME who is supposed to be caring for HER. She worries, daily. She makes sure I remember to take my medicine on time, she’s super supportive of our dietary changes and the lack of soda and sugary snacks that her friend’s pantries have, motivates me to get up and go for evening walks, and gives me a reason to keep doing everything I can to stay strong and healthy and living my best life. I can’t take away all of her worries, but I can teach her that there is joy even during hardship, and that you never give up, no matter how hard life gets.
Being diagnosed with cirrhosis changed me physically in so many ways, and it definitely changed the path I was on, and affects the structure of life in this new normal I’ve created for myself. But it’s also made clear which relationships are the ones that truly nourish my soul, and I’m grateful for the people who have stuck around to walk this new path with me.
As a cirrhosis patient I am so thankful for the medical professionals who saved my life when my body failed. They truly worked miracles on my behalf. As I think about my experience, however, I’m reminded that they are really people just doing their job. They are paid to do what they can to keep me alive. The unpaid heroes who gave of themselves and poured their own life energy into saving me are the ones that I am most thankful for. Sadly our society places too little value on caregivers.
The first time my mother took me home from the hospital, I was an infant. She’d been able to prepare for that though; learning how to take care of the needs of a baby by reading books and taking classes. She had support, with a wide network of family and friends available who knew how to do that type of caregiving, to answer those late-night questions and offer helpful tips. But when she took me home from the hospital after my cirrhosis diagnosis, she was much more alone. Overwhelmed, overworked, and unsure of what I needed. There were no books, there were no classes, and she knew no one with cirrhosis that she could reach out to for help. Suddenly she had to become a new kind of caregiver, for her grown-up daughter, with no knowledge of what I even needed to survive.
I always refer to the moment of finding out that I had cirrhosis as, “when we got the diagnosis.” Not, “I,” but “we.” Because with cirrhosis, the diagnosis doesn’t just change your life – it changes the lives of your loved ones too. Especially the one/s who are tasked with caring for you.
For us, the impact of my diagnosis was felt in so many ways, from many different directions, by everyone in my family.
- I was hospitalized with liver failure in my hometown hospital. During the 11 days that I spent there, my mother had to try to balance her time between being there for me, and being at home to take care of my daughter. I’m a single mom, and at that time my daughter was only 6-years old. My mother would spend the night with her, get her to kindergarten in the morning, then come check on me at the hospital. Day after day.
- Then I was moved by ambulance to a much larger hospital 3 hours away from home. My mother came to stay with me there for weeks, as they did a biopsy to identify cirrhosis, as I went through dozens of other tests to determine cause, and as they tried their best to stabilize me.
- While I was away from home, my brother back at home had to help, by getting my daughter to and from school, and staying with her when she wasn’t with her dad – while still juggling the needs of his own busy family and business.
Everyone had to disrupt their lives and livelihoods, overnight, as they pulled together to take care of the details of my life, while I fought hard to simply stay alive.
My mother remembers, too clearly, the moment when the hepatologist gave me the diagnosis, and how her stomach dropped as the doctor told her that the biopsy showed Stage 4 cirrhosis. He assured her that stage 4 cirrhosis was not like stage 4 cancer – there wasn’t really any treatment, there were no drugs to fix it, and no surgeries to try, but there was hope.
I’ve often thought that my mother’s job as caregiver had to have been so much more difficult than my job as the patient. Between hepatic encephalopathy episodes that clouded my thinking, all of the medications that I was on that made me drowsy, and just my overall weakness and exhaustion – all of my memories in the hospital, and even the first few months after coming home, are hazy. As a mother myself, knowing that my mom had to sit by my bedside, in hospitals and at home, not knowing how to help me get better, not knowing if I would pull through, is absolutely heartbreaking.
And, since I am a mother myself, my daughter Abby had to endure far too much, as I fought my way back from liver failure. She missed me terribly while I was in the hospital; but when she would visit me, she had to see a mommy hooked to dozens of wires and tubes and machines. While I was in the hospital away from home, I didn’t get to see her at all, for weeks. When I finally was able to come home, we had to make our home at grandma’s house for a while. She didn’t understand why I couldn’t get up and play, why sometimes I didn’t make sense, why I was so skinny and looked different, why sometimes ambulances took me away late at night. It’s been over 2 years since those dark days, but the ordeal still affects her greatly. She has trouble at school, because she worries about me alone during the day. Since it’s just the two of us at home, she feels a burden to care for me – even though I tell her, daily, that caring for me is not her job. It wears on my heart, knowing she carries this big burden of concern, that’s far too heavy for an 8-year old girl. But she has seen how bad things can get, and I can’t erase that from her mind. I can’t promise her “everything will be ok,” because cirrhosis is a tricky, unpredictable disease. So, I just promise her that I will always fight.
It is so strange, for life to come so full-circle. 38 years ago my mother brought me home from the hospital as a fragile infant –this time she was bringing me back to my own home as a very fragile cirrhosis patient. She and my brother had to make my home “cirrhosis-proof,” much like my mother once baby-proofed her home. They installed grab bars and a shower chair in the bathroom. My mom bought a commode for my room, for times I was too weak to even make it to the bathroom. I had to use a walker, due to the muscle wasting and neuropathy, so halls had to be cleared and furniture re-arranged, so that I was able to easily navigate my own home. So many changes.
I’m incredibly lucky that my mother had the dedication to drop everything and be there for me. She had retired, less than a year before I “got sick.” But she also worked several part-time jobs to supplement that income. So, devoting herself full-time to caring for me meant that she couldn’t work – but she still needed to pay her bills, as well as my own. We almost lost the house, until an angel of a friend started a GoFundMe that got us through those months before my disability was approved. I don’t have to imagine what it would have been like, to not have a village to rally around me when I was most in need; I’ve heard the stories from way too many patients, of bankruptcies and tragedy, when a sudden illness strikes. Cirrhosis is a very tough disease to live with – but thanks to the amazingly caring people in my life that support me, I’m blessed to have a team that’s even tougher. My heart goes out to all of the caregivers who do their best for the loved ones in their lives and I am saddened when I think of all the patients who struggle without such a support system.
Fatty Liver Foundation organizer
As a liver disease patient my goal is to help others understand, manage, or prevent the disease