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Navigating the Medical System as a Cirrhosis Patient

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. 😊