Post 11: Living with cirrhosis.
I often feel like living with cirrhosis is like living an exaggerated life.
The peaks are higher, the valleys are lower, and the edges between the two are so very much sharper. Each decision you make takes on an exaggerated new significance – an unhealthy food choice doesn’t just mean a chance at gaining an extra pound or two – it can mean noticeable swelling from the excess sodium. Not being hypervigilant about germs doesn’t just mean a chance at catching a seasonal cold – it can mean a hospital stay from virus-induced complications. Each choice, each day, becomes magnified under the lens of your cirrhosis diagnosis.
Adversity often feels overrated. Yes, it builds character, and I’m a personal example of how going through incredibly hard times doesn’t have to leave you feeling defeated, it can help you build a story of personal heroism over enormous challenges. Yet… adversity is still so darn HARD when you’re in the midst of it, isn’t it? Telling someone to stay strong, that things will get better, that it will build character – those things mean very little, when life is in a very dangerous, precarious, uncertain place.
But those clichés really are true. Hardship leads to becoming a more resilient person. My daughter asked me once, if I had magic wishes from a genie, would I use one to go back and fix things, make it so that I didn’t ever get sick? And that is one of the hardest questions that I’ve ever considered. Because… Oh, how I’d love to not deal with the day-to-day stress and vigilance that come with being a cirrhosis patient. To be able to toss away the cloak of worry that rests on my shoulders, always, that reminds me to make careful choices, to be aware of how I’m feeling, to mentally keep a running tally of symptoms and side effects to mention at my next hepatologist appointment. Yet, if I am perfectly honest, and I know it sounds crazy, but… I’m not sure that I would change that part of my story? Because facing death – really, really facing it – and all of the incredibly complicated feelings that come along with that as you realize you have a disease that could end your life in an instant… Well, it somehow lifts a veil on the world. Everything that matters comes into focus. You live differently. You live with a passion, because you know that at any time, things could be otherwise.
You can get mad, or you can move along with living life in spite of the adversity in your way – and you don’t have to live with a chronic illness to understand that. When you recognize that a challenge is out of your control; when there is no fix, or solution, or cure – that is when you have to change yourself, and change your way of thinking about the problem, so that you learn to live in spite of it.
Part of living an exaggerated life is learning to deal with things in new ways. I was diagnosed in mid-2016, just a couple of months before my daughter turned 6 years old. Her dad had left a few days before the previous Christmas – not because I was sick, but it was definitely an added reason. My mother was my caretaker at the time, but she also juggled several part-time jobs that she’d taken on, to help me cover my bills. So, while my little girl was learning her letters and numbers while away each day at school in kindergarten – at home, she was learning how to call 911, memorizing our address, and deciding which neighbors would be most helpful in an emergency if she couldn’t find my phone. It felt heartbreaking, to put that burden on her; but it was necessary for her to learn what to do if something happened to me, since she was the person who was home alone with me the most.
Another part of life that became an exaggerated parody of what it had been before, was dating. I had spent 11 years with Abby’s dad, and then a couple of years recovering enough from illness to venture back into having a social life again. I slowly rekindled old friendships, keeping only the ones that were compassionate and understanding about my new limitations and frequent last-minute cancellations. But dating? Oh boy. Each potential date brought layers of anxiety – A casual “meet up for drinks” date was no longer an option. A dinner date could be problematic, since my dietary restrictions made it hard to find safe meals when dining out. Something exciting and fun like concerts or festivals or sporting events could be exhausting, and I’d never know if I’d have the energy to attend something like that by the time the weekend rolled around. I eventually settled on simple mid-morning coffee dates, but then the anxiety would be back all over again when it was time to consider date number two.
But, I’m learning that life is just going to be messy sometimes, no matter how hard you try. Honestly is better than hiding away. And I can’t learn from my obstacles until I face them and try to overcome them. Because with so many things that can, and regularly do, go wrong in my life – anxiety is kind of a given. Since I can’t completely get rid of all of these exaggerated complications, I might as well learn to make them work for me.
I’ve learned that it’s not the actual events that happen to us that matter the most – it’s how we think about them. Each of us have the ability to write our own story in our heads, to frame a situation in a way that makes us a victim, or a conqueror, and to move towards a dead end, or a happy ending. My life took a major turn from what I’d planned - 2016 was quite the plot twist, that’s for sure. But as I adjust to this new, exaggerated form of my story, I’m learning that cirrhosis does not, ever, have to be a dark cloud over my travel though life. We all, every single one of us, can harness our hardships into a storyline that creates a triumphant new beginning. Cirrhosis might have created an abrupt end to my “old life,” but it’s only the beginning of a new story that I am determined to make into a beautiful one.
Fatty Liver & Liver Cirrhosis Are At Epidemic Levels!
- 100,000,000 Americans have a fatty liver. Most don't know it.
- 20,000,000 will develop liver fibrosis disease or NAFLD (nonalcoholic fatty liver disease) as a result.
- 5,000,000 million will progress to liver cirrhosis or NASH (nonalcoholic steatohepatitis) and possibly end stage liver failure.
- Some will be lucky enough to be listed for a transplant, the only cure for late stage liver disease, but 30% of those listed will die waiting. Death by liver failure is long and difficult.
- We want to help you avoid this kind of death by helping you understand how you may be killing yourself slowly. And, what you can do about it.
- If you are already ill, we will do our best to help you with that process.
To improve the diagnosis, treatment & support of Americans with fatty liver, NAFLD or NASH through awareness, education, screening and patient advocacy.
We Advocate Early Screening
Typically, nonalcoholic fatty liver disease (NAFLD) and nonalcoholic steatohepatitis (NASH) are silent diseases. They have no symptoms. Even if cirrhosis has developed, there are often no symptoms until the liver has become so damaged that the only option is a liver transplant.
There is currently a quick, easy and economical method to screen for fatty liver disease called a FibroScan. Unfortunately, the current medical standards policy is not to screen for liver disease. And, unless you are sick and have symptoms, insurance probably won't pay for the scan, even if you're lucky enough to have a testing system in your area.
The Fatty Liver Foundation is championing a nationwide program to provide liver screening services in cooperation with Liver Care Canada and Echosens, the manufacturer of Fibroscan, to make it possible for people who have a concern for their liver health to get an inexpensive scan. Since insurance doesn't normally cover screening for people who aren't sick yet, it will be on a private pay basis. However, as a nonprofit foundation, we believe we can deliver this service at an affordable price.
If you would like to watch some very good videos about liver disease,
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.
Maybe I didn’t have to be a statistic.
Maybe I didn’t have to be one of the 4.5 million people diagnosed with liver disease in 2016.
Maybe I didn’t have to be one of the unlucky liver disease patients who goes untreated until progressing to stage 4 cirrhosis.
Maybe I didn’t have to face liver failure, grim survival odds, and spend over a month fighting for my life in the hospital.
But that’s the story that did happen to me. And no wishing or “what if”-ing can change that.
If I hadn’t been one of the millions of Americans who were uninsured, maybe I would have had an established relationship with a primary care physician. As a hard-working momma building her own business from home, there were almost no options to purchase private insurance, so as a healthy woman in her mid-30s, I went without. This worked out ok…. Until it didn’t.
I ignored red flags for months, as I got sicker and sicker. If I’d had insurance, I would’ve definitely gone to see my doctor in those early days. But I didn’t. My episodes of nausea and vomiting got more extreme, and lasted longer. My mom suggested going to the ER, since I didn’t have a doctor’s office to go to. If I’d had insurance, I would have gone. But, I didn’t.
Eventually I had an episode that lasted over a week. A full week of not keeping anything down, and barely getting out of bed. At that point, I was too tired to resist my mother’s pleas to go to the ER. Once there, I was full of anxiety - questioning every test and scan they wanted to do, so worried about the bill I’d get later that I didn’t have time to worry about how seriously ill I was. I could tell that things were pretty bad, by the way the nurses started rushing in and out more rapidly, speaking to each other in hushed tones. But in my head, I was just counting up the dollars as they drew more blood, and hooked up IVs, wires, and monitors. When the doctor finally arrived and informed us that I would need to be admitted – if I’d had insurance I might have agreed easily, as it was pretty obvious at that point that I needed medical care. But I didn’t.
I cried and argued and then cried some more. I put up such a fight out of fear – I’d never spent the night in the hospital before. But most of it was fear of not being able to afford a hospital stay! Luckily, the hospital had a social worker visit my room immediately after being admitted, and they were able to sign me up for Medicaid, and that would start covering my medical bills immediately. The relief washed over me. But it was short-lived. Because while I thought that having insurance would help me solve this medical mystery happening to me, it didn’t.
Even though I finally had insurance, seeing a doctor was still complicated. State insurance offers really limited choices of doctors, and I was assigned a primary care physician at a local clinic that was overburdened and overbooked. We then started a frustrating process – I’d be released from a hospital stay, we’d call to set a follow-up visit, my actual assigned doctor would be busy, so they’d make an appointment with another nurse practitioner or available resident. I’d go to that appointment, try to explain my whole history quickly to someone I’d never met, knowing I’d never see them again, they’d give us a blank stare, followed by something like, “you are way above my pay grade, you’ll need to see your actual doctor for this.” But the doctor was always too busy, so I didn’t.
Over and over, we did this routine. I believe that if I’d had a primary care doctor from the beginning, someone who could get to know me, see the decline in my health in each visit, who was invested in actually figuring out what was going on – I would not have gotten as critically ill as I did. But I didn’t have that, I never even got to see the same person more than once, and didn’t meet my own, assigned doctor for months.
Eventually I had what I call my “grand finale” of hospital visits – I was admitted to our local hospital in such bad shape that I barely knew my own name. I had sepsis, liver failure, adrenal failure, and a long list of other scary stuff happening. I live in the 11th largest city in Washington state – not a huge metro area, but not some small town either. Yet we have no hepatologists in our entire county. There I was, in liver failure and needing a liver biopsy, but no doctor in the area was trained to care for me. It took 11 long days of waiting in my local hospital, before they would transfer me to Seattle. It scares me to think back on what critical condition I was in, and what could have happened in those 11 days without any actual care for my failing liver.
But I was lucky – the hospital that I was sent to had a liver transplant center, and an amazing hepatologist who immediately started finding answers and putting me on a path to stabilizing. Each time I make the 3-hour trip over to Seattle to see my hepatology team for follow-up appointments, I remind myself that while it truly is a big burden to make such a long trip both ways just for one doctor’s appointment – I’m extremely lucky to have access to a hepatologist at all. Some people don’t even have a transplant hospital within driving distance. As the epidemic of fatty liver disease grows, our country is greatly in need of more hepatologists to treat those patients as they get sick.
There is a quote I keep up on my wall – “You either get bitter or you get better. It’s that simple. You either take what has been dealt to you and allow it to make you a better person, or you allow it to tear you down. The choice does not belong to fate, it belongs to you.” – Josh Shipp. This quote guides me often in my journey with liver disease. But getting better involves our doctors making us part of the team. To give us the knowledge and tools to participate in our own health and wellbeing. Since there are so few hepatologists, and since liver disease is seldom the only illness a patient is dealing with – we as patients need to be able to advocate for ourselves when seeing other specialists. We need to know enough about diet, about which medications are safe and which to avoid, what questions to ask before procedures, so that we can work together with our team of professionals in keeping ourselves as well as we can be. Because with all of the scary stuff that happened, with the lack of consistent medical care, there were a lot of near misses, and I could have died.
But I didn’t. And as long as my hepatology team remembers to include me, and keep me informed enough to manage my own care, to know now when those red flags need attention, and to know that I have a doctor who can help me – I can keep it that way. 😊
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.
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.
I don’t remember being diagnosed with cirrhosis. My mother remembers it very clearly though. I was a few days into what would end up being a very long stay at a Seattle hospital, a few hours from home. Two weeks before that was the first time any doctor had mentioned liver issues, a week before that my liver started failing, a couple of days previously I’d had a trans-jugular liver biopsy done – so we were anxiously awaiting some news. I only remember bits and pieces of those weeks in the hospital, a combination of just being very sick, sleeping a lot, and newly diagnosed hepatic encephalopathy. I don’t have any memory of the moment, that absolute turning point in my life, when my hepatologist told my mother that my biopsy had allowed them to finally give me a diagnosis – Stage 4 Decompensated Cryptogenic Cirrhosis. My mom said she remembers him telling her that cirrhosis stages weren’t like cancer stages, that Stage 4 sounds very scary but isn’t a death sentence, but the words were still a devastating shock to her. As soon as the hepatologist left, she quietly went downstairs, to a bench outside of the hospital, where she stayed and cried for a very long time. As a mother myself, it hurts my heart, imagining how hard that must have been for her, the fear that she could lose me, in spite of the doctor’s assurances that I still had a fighting chance.
I spent a couple more weeks at the hospital, before being strong enough to go home. But, “going home” meant going to live with my mother. I was medically stable enough to leave the hospital, but I was nowhere NEAR strong enough – mentally, or physically – to live on my own, let alone try to care for my 5-year old daughter. For those two months, I spent the majority of my time in her guest bedroom. She had to buy a commode for me, which felt humiliating, because even with the walker I was using to get around, I couldn’t make it to the restroom quickly enough. My strongest memories from that time are of lying in the bed, knowing that my mom and daughter were outside on the patio, and just wanting so very badly to go join them outside, and sit with them in the sunshine. I would try as hard as I could, struggling to get up out of bed, holding onto that walker for dear life – but I was too weak, and had too much muscle wasting, to make it across the house, and out to the patio. I was alone, in so many ways. Those were the hardest days of my life.
But, when you have a “why,” it gives you strength. My little girl is, and always will be, my reason why. The reason why I started doing small exercises, even though they were just from bed. The reason why I started getting up every couple of hours, even if all I could do was use my walker to make it across the hallway and back. The reason I started reading and researching, learning all that I could about liver disease, nutrition, and how to build myself a solid plan and path towards wellness. I was determined to run and play with her again, and to see her grow up. My stubborn persistence paid off, and soon enough, we were able to move back home again.
The strange thing about a cirrhosis diagnosis, is that it doesn’t just change your physical health. The changes are wide and profound and everywhere. It’s like grieving for someone you’ve lost, but that someone is you. The person you were, the dreams you had, the path you saw yourself following in life. No longer could I work as a full-time writer and public speaker, traveling around the country. No longer could I have a bright social life filled with friends, nights out, and frivolous fun. Even the books on my shelves were a reminder of a life that I no longer had – books for things like building a business, travel photography, the motherhood books I’d kept in the small chance I had another baby. That Meagan was like a ghost to me. And it took a lot of time to get over that grief.
But, like a phoenix that rises from the ashes, starting anew – I feel like I’ve truly become a different person. I have an incredibly deeper gratitude for every little thing in my life, knowing it could be otherwise. I’m learning to accept the really hard things, because they allow me to see the contrast in life - the good parts shine so much more brightly after experiencing such dark times. Cirrhosis hovers around the edges, and can’t ever be forgotten or ignored, as it requires a hypervigilance about my daily lifestyle, and watching for symptoms or signs to share with my doctor. I cried so many tears, thinking about the days of life that cirrhosis might steal from me. But none of us know how many days that we will get, whether we have a disease diagnosis or not. So I plan to spend mine living this life to the fullest – not in spite of my diagnosis, but because of it.
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.
I have this incredibly clear memory of sitting in my hospital bed, at Swedish hospital in Seattle. I was hooked up to IVs and what seemed like dozens of wires and tubes. My nurse was on high alert, watching all of my vitals closely. Things were obviously serious, and I was obviously very sick.
I had arrived a few hours earlier, in an ambulance from the hospital in my hometown, Yakima, Washington. As soon as I was in my room, before even meeting my new doctor, I had been sent for urgent new imaging. I’d just returned back to my room to find that my younger brother had arrived, after making the 3-hour drive from Yakima. He had brought my mother with him, and I could see her talking with the nurses, trying to get an idea of what was going on. There was so much commotion going on, but I was too fatigued to care very much.
I laid in my big hospital bed. I’d lost over 70lbs and I felt so very small, in such a big bed, in a big hospital, in a big city. I was exhausted, and suffering from hepatic encephalopathy, even though I didn’t know yet that was what it was called. While they all talked of lab results, a trans-jugular biopsy planned for the next morning, and other scary-sounding things…. I stared out the big window. Out at the bright city lights and all of the tall buildings. And while I could see that my momma’s face looked scared and tired and worried, I could tell that my own face did not. I felt a huge sense of relief. It felt like finally, after almost 9 months of getting sicker and sicker, I was finally going to get answers, and had found a competent team of doctors and nurses that were going to help me. I felt this enormous sense of peace, that these doctors would not let me fall through the cracks again. These doctors would not give up on me. I felt safe, finally.
The story leading up to my arrival at Swedish is long, complicated, frustrating, and all too common for so many liver disease patients. It’s filled with missed opportunities, bad communication, and doctors who were either indifferent, incompetent, or just too overworked to be focused on patient care.
I had spent 9 months, getting increasingly sicker and sicker. It started as extreme nausea and vomiting spells, that would last so long they’d land me in the ER, leading to longer and longer hospital stays. Each time I’d be discharged with few answers, many questions, and my health deteriorating further. Until one day, after months of this merry go round of medical mystery – I was told to get off of the ride. The gastroenterology office that I had been referred to sat me down, and told me that there was nothing wrong with me that they could treat. That my symptoms were likely just anxiety-induced. I was sent to see the mental health clinic for counseling, and advised not to come back to see them again.
I spent the next couple of months seeing mental health counselors, and actively avoiding seeing physicians, even though I was getting sicker every day. I mean, the doctors are the experts, right? You grow up being taught that you always listen to the doctor, and they always know what they’re doing. If they said it was all in my head, that I was just a silly, anxious girl, I figured that they must be right. I was so discouraged, and so hard on myself during that time.
In April of 2016, I ended up in the ER, once again, and was the sickest that I had ever been in my entire life. Because, surprise – there WAS something physically wrong with me, and it was NOT all in my head. I spent the next 11 days in the Yakima hospital, fighting to get better, but feeling neglected. As though they still thought it was all in my head. As doctors asked me questions about my stress level, asked if I had an eating disorder, questioned my mental stability. But then, finally – FINALLY – due to the fact that I had ascites that couldn’t be controlled even after paracentesis, lack of a single hepatologist in my entire city, and needing a liver biopsy to try and determine why I was suddenly in liver failure – I was given a bed at Swedish hospital, and an ambulance ride to get there.
It was such a long road to diagnosis. Looking back, I can see so many places along the way that I wish things could have gone differently.
- If health insurance wasn’t so challenging, I would have had it when I first started getting sick. I would have had a primary care doctor that knew me and my history, would have recognized how sick I truly was, and would have cared enough to figure out what was going on before it was too late. I wouldn’t have waited so long to seek help, and ended up seeing a doctor for the first time at an ER.
-If more doctors understood liver disease, someone might have recognized what my signs and symptoms met much sooner. Not only does my city not have a single hepatologist, but the majority of doctors, even at the GI clinic, know shockingly little about liver disease in general, and cirrhosis specifically.
And, sadly, after connecting with other patients in online forums, my story isn’t that unusual. Outside of big cities with major hospitals – getting a cirrhosis diagnosis can be a long, frustrating process. More knowledge and outreach to patients and doctors could help liver disease be recognized sooner, when there is still a chance to stop it from progressing to a scary diagnosis of cirrhosis.