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.
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 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.
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 meant 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.
What is it like to become a cirrhosis patient? It’s like, I’m still me, same body and face and places and people. But it reminds me of helping my 3rd grade daughter Abby with her math homework. It used to be that doing math was simple. You did addition, subtraction and you carried a one. We all did it the same and it made sense. But now, it’s Common Core; there are so many new steps that make it feel overwhelming, confusing, nothing is simple and nothing makes sense and by the end of the day I’m so tired. Sometimes, that is what having cirrhosis feels like – The same tasks need to be accomplished, but suddenly the process to get there has changed and become so much more complicated.
First is addition. You add in the doctors, appointments, insurance copays, and bills. Next, add up all of the new prescriptions that you need to remember to take, some with food and some never with food, add them into your daily routine in the morning and at night, maybe add them into your purse to take in the afternoon, and don’t ever forget, maybe adding an alarm to your phone.
Next is subtraction. Because cirrhosis also takes so much away. You lose people. When you get sick, at first people are supportive, they send flowers and cards, they visit. But when you don’t “Get Well Soon,” people become distant. My daughter’s father left, after 11 years together – not just due to me getting sick, but the strain was definitely a trigger. Then I had to stop working. People call you lazy when you don’t work, as though you would choose to sit home all day. As though being sick is a vacation, a luxury, a good time. Not working takes away your identity, your purpose, makes you feel less useful. And all of these things took away my link to other people, my social outlet, my CONNECTEDNESS. I felt like I didn’t fit anywhere anymore. I was “other.” A sick person. Different. All things subtracted from a life that had felt whole, but now was full of holes.
As a woman, I’ve never been overweight, but I was always on a half-hearted “diet,” as so many of us are. But liver disease changes that too. I’d always wanted to be “skinny,” until I became so sick that I couldn’t eat. I lost over 70lbs in just a few months, and was skin and bones and so skinny that it hurt to sit in the bathtub. I had my pants quite literally fall off of me in public – more than once. So, let’s add a big scooping of embarrassment onto our equation. A random memory defines a turning point; I was grocery shopping after getting stabilized a bit. I needed ranch dressing. I instinctively reached for the non-fat version that I always bought…. then realized, no. Not anymore. Even when it comes to the most mundane tasks, nothing is the same. I need the ranch dressing made with full-fat, all the calories, I’m wasting away here, I need anything I can get. I wondered, how did absolutely everything change so much? And I cried, in the middle of a grocery store dressing aisle. Cirrhosis is such a weird, complicated disease that even buying salad dressing becomes an emotional event.
Then, we get into more complicated mathematical equations. You’ll need to learn what labs are used to calculate your MELD score, a new equation that will become very important as a liver patient. You’ll start reading labels on every single food that you want to eat, as you add up your sodium, every day, staying under the magic number your doctor gives you. Maybe you have to watch other things too, like your sugars or fluids or carbs, oh my. So many things to keep track of, and all you really want to do is take a nap.
But… Cirrhosis also adds things to life. It adds a new appreciation for the little things. Doctors at one point didn’t give me very good odds. Doctors shouldn’t do this, even though patients ask for it, sometimes even beg for it. Human bodies are incredible, and diseases are unpredictable, making most of the predictions that doctors make not very accurate. My doctors threw out numbers of months and years, odds and percentages, and their math was all wrong because I beat those odds, and here I am. But during those early months after diagnosis, I felt weak. I felt fragile. I didn’t tell anyone but my mother, but I was scared to go to sleep at night, fearful that I wouldn’t wake up again. So I did a lot of thinking and searching, trying to make peace with these new scary feelings.
I counted out the years I might miss with my daughter, as she grew up. I wrote out letters for her, to read at milestones as she grew, in case I wasn’t there to guide her.
One by one I also wrote out letters to each person in my family, and a few select friends, saying anything I felt was unsaid. Just in case.
And then I decided, that now that I had realized all of the things I might lose, if cirrhosis didn’t let me grow into the old woman I’d expected to become, and how precious all of the things I had around me truly were – that it was time to start squeezing every bit of joy out of them that I could. There is no cure for cirrhosis. But none of us know our fate. I know what I’m up against, and I’ll fight it. And in the meantime, I’ll live. Because life is still beautiful, and it’s even more beautiful now, that I realize how truly grateful I am for every minute of it that I have.
Meagan is a young, 40 year old, woman with a young daughter. She faced sudden liver failure in 2016 which very nearly killed her. She is much improved but deals with many of the challenges common to liver disease patients.
The thing that makes her so special that we are devoting an entire section of our patient stories to her is that she is a gifted writer who is telling her story in hopes that it may help others with their personal struggle. We hope you will spend some time with her story and we invite your comments.
This is the outline of her story.
Outline: My Journey through liver disease hell
Post 1: Introduction post. Who is a Cirrhosis Patient? In this post I’ll give an idea of who I am - as a person, and as a cirrhosis patient. The post will give an idea of what kind of story line will be coming ahead. I hope to condense my story, giving a brief intro of how I was diagnosed, to where I’m at today, without a ton of detail, but enough so that someone reading will have some background going forward into the rest of the following posts.
Post 2: The struggle to get a diagnosis. In this post I’ll share my story of getting diagnosed with cirrhosis, and how incredibly difficult that was. All of the obstacles, all of the missed opportunities, all of the doctors who dismissed us. The frustration now, looking back, and what I wish could have been done differently – and the things that I wish doctors would think about and change now, in how they care for their patients with liver disease, so that they could do better.
Post 3: How it feels to have a new diagnosis. The roller coaster of feelings that comes with a serious diagnosis. The lack of information from the doctors. The process that a patient like me goes through, trying to learn how to take care of themselves. The fear, as you learn how to survive in this new world of cirrhosis where you get conflicting or no useful advice.
Post 4: Caregivers. It has to be harder on the caregivers than it is on the patients! I want to share some of how hard it is as a patient to rely on someone else. And I want to share what it’s like from my mom’s point of view. Most people don’t get what taking care of a cirrhosis patient is really like day to day.
Post 5: Relationships. How cirrhosis changes all of the relationships around you – it changed everything for me. As a mom, with my family, my daughter’s dad left, so many friends don’t know how to react to someone being sick and not getting better. The social isolation that comes from chronic illness. The challenges of trying to provide a normal life for a child while battling constant illness.
Post 6: Appearance: This is a big one that we recently discussed in a cirrhosis Facebook group. It feels shallow to think about, when you’re struggling with such life or death type of health conditions. But when you look in the mirror, and you don’t recognize yourself, due to weight loss, or the weight gain in odd places from ascites or edema, the hair loss, etc. That can really damage your self esteem at a time when you’re already really fragile, and it seems to be something that a lot of us deal with, but are embarrassed to talk about.
Post 7: The health care system. This is a major frustration for anyone with a chronic health problem. But with cirrhosis, it brings extra frustrations, since there are so few hepatologists, and liver disease isn’t well known by other doctors at all. How I wish that doctors would remember that we, as patients, need to be a part of the team, since we are the ones who will be seeing multiple specialists, we are the ones who need to be able to be proactive about our own health, we need to be able to know enough to take care of ourselves… yet so often doctors treat us as the bottom of the chain, as though we don’t need to know about our own results or health. I’m not sure who all will read my posts, but I’d love to share my ideas on how the system could work better 😊
Post 8: The shame of cirrhosis. I dealt with this right away. Even though my diagnosis is not related to alcohol, that was everyone’s immediate reaction – “I didn’t know you were an alcoholic?” And, even if someone is, that’s still a terrible thing to say. There needs to be more education about the many, many ways to get cirrhosis. So that people don’t have to feel ashamed of their diagnosis. Because too many feel that way. It keeps me from talking about my diagnosis.
Post 9: Loss of identity. When you deal with chronic illness, you lose so much. And those things all add up to losing your sense of self, in a lot of ways. You don’t feel useful, you lose your place in the world, you don’t know where you fit in anymore.
Post 10: Finding a new normal. After everything that I’ve been through, life is still good. The hard things make me appreciate the good things even more. Once you get over the initial shock of diagnosis, then the early stages of fighting to get your health stable – you get into a routine, you have to accept that you will not “go back to normal” again, and you start to adjust to a “new normal.” And that’s when you start to live again.
Post 11: Living with cirrhosis. What it’s like to live with cirrhosis. Accepting the uncertainties. Learning how to be hypervigilant with your health – without becoming a hypochondriac – is a difficult balancing act. It’s no use being healthy enough to live, if you’re not going to LIVE. So, you learn to do both.
Post 12: Finding Hope. Cirrhosis is a journey. And medicine and science is always changing, we’re always learning new things. I think that just as each individual patient can make huge improvements in their health by learning and making lifestyle changes – cirrhosis care as a whole is going to have huge improvements in care in the coming years too. There are a lot of things to be hopeful about, and positive about, and I want to share those things to close out the series. And definitely remind people to be organ donors!!
I have been helping several groups doing research on what is happening with liver disease patients and I have been surprised by a trend that I have noticed. When a person first learns that they have a serious liver disease they reach out to Dr Google, our forum, and significantly to FaceBook support groups. I don't have numerical data, but I interact with multiple forums that reach thousands of patients so I have a window into what the day to day is like.
A problem we have focused on is that it has been the standard of care not to screen for liver disease at the primary care level, in the absence of symptoms. That means that the first time many people learn of their risk is being told that they have cirrhosis. Much of our effort has been spent trying to illuminate this as an issue. We are particularly concerned as the disease is showing up in younger people in the death rate statistics but we hadn't really seen movement in when people learn about the disease.Read more
This is a major step for us as patients. We all know the story. The doc says sadly, "You have cirrhosis, I'm sorry we have no treatment". This is a refrain we see retold thousands of times here at the Foundation and it is the path I have personally traveled. I've written that we are on the brink of a new day when we will have options. This is the dawning of that day.Read more