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.