By Jess Harper, as told to Michele Jordan
As I was starting my nursing career as a night shift nurse in the cardiovascular ICU, I began having weird symptoms. I had just turned 30 and had continued my love of sports in adulthood. I played rec volleyball. I had just bought a house. I was doing all of the things for someone my age, but I had this dark shadow over my life that no one could figure out.
I was so tired! I couldn't drive more than two hours without having to pull over and rest. I was told to take extra melatonin to help me sleep during the day and work at night.
Also, my hands were itching – a lot! My co-workers thought it was the soap, so I changed to something for sensitive skin. But over time, my itching was so bad I would wake up with bloody and torn sheets from scratching so vigorously. My family thought it was a nut allergy, and they would adjust to make sure I didn't come in contact with nuts. With all of these changes, my symptoms persisted.
The Liver Is Silent, My Symptoms Are Loud
They say the liver is silent in terms of symptoms and you don't know there's a problem often until it's too late. That's partly true. I've had signs and symptoms since I was a teen and would have high liver enzymes. My symptoms increased after I started my career, but I struggled to find a doctor to take me seriously.
In early 2014, I remember spending time in the ER because the itching was so bad. I had welts up and down my legs, and doctors treated it like an allergy and gave me steroids and allergy medication. I was told I was imagining all of my symptoms. I grew up in a small town in Indiana where what doctors say is law. I've since learned that doctors are human. They deserve respect, but they put their pants on like all of us.
But everything changed on July 4, 2014. I was celebrating the holiday with family when I passed out and was turning yellow with jaundice – a major sign that something was going on with my liver. Thankfully, two of my family members there were doctors, and they suggested I go to the ER right away. I found myself in a bed in the very ER I worked as a nurse. After some tests, the doctor said I had hepatitis and to go home and deal with it! I was shocked by the diagnosis and the delivery. My mind was spiraling!
Fortunately, I knew enough with my background to know the liver is treated by a gastroenterologist (GI doctor), so I pushed for a GI consult. I said I wasn't leaving until I spoke with a GI doctor.
Sweet Freedom
It's ironic that all of these events started on July Fourth. I started my path to freedom from my symptoms. At the same time, the ER doctor dismissed my symptoms and didn't provide information. (He didn't even write discharge notes, so I sat in the ER for hours longer than I needed to.) The GI doctor looked at my tests and said she thought she knew what was going on. She called me every other day to check on me while we did additional tests. By the end of the month, she told me about PBC and what that meant. I know in my heart I would have died if it weren't for her care and determination to help me get a diagnosis. She was an absolute angel.
From Care to Care
After treating me for a bit, my doctor suggested I look into a liver transplant. Of course, your mind races with all of that new information. There's often a wait for a new liver. I didn't know what to expect. But when I went to the doctor, he said I had some time before a transplant, and I started being treated by a liver doctor (hepatologist). During this time, I even signed up to participate in a clinical trial of which I'm very proud. It made me feel like I was doing something. My fatigue was better, but still impacting my work. The doctors helped me adjust my hours, moved me to the day shift, and helped me transition from 12-hour to 8-hour workdays. They were very proactive in helping me maintain my normal life.
During this time, it was challenging because there wasn't a lot of data. Most of the research I saw was from the 1980s. It said you couldn't have children and that the mortality rate was high. Now, we know the horizon is not that bleak.
From Patient to Purpose
A lot has happened since that fateful day in July. I've been prescribed medication for my condition that has helped with my fatigue and itching tremendously. I adjusted my hours at work and took other steps to ensure my health was a priority. I spent years caring for others as a nurse, and I knew I needed to do the same for myself.
After many years of treatment and attempts to heal my liver, it was clear that I needed a liver transplant. I received a new liver during COVID and have felt so much better. While recovering in the hospital, people reached out to me on social media for advice about their own liver issues. I was happy to be able to give back.
I now serve as a patient advocate for the Liver Foundation. I helped create a Patient Bill of Rights for people with PBC. I've had the pleasure of advising doctors on how to talk to patients. I don't want anyone to go through what I did – being discounted and called crazy.
I've participated in walks, seminars, and whatever I can to help others with PBC understand the disease and witness someone living with it. There wasn't enough research or information on the condition when I was diagnosed, and there still isn't. But we've come a long way. We've gone from one medication to three. Experts used to say PBC impacted life expectancy, and we now know that isn't true.
Today I'm still in nursing, but with hours that work better for my health. I work in tissue and organ donation, and I have the honor of helping families understand how their loved ones save lives like mine. I have met my donor's family, and I am eternally grateful to them. I'm traveling more and getting out and enjoying life. My itching is gone. My energy has returned. I love chasing my 2-year-old niece around. I have a deep appreciation for each day. I have a whole new life now. I got lucky, and now I'm paying it forward.
Jess's Tips
- Don't rely on AI for your medical info. It's not always accurate. Use multiple sources.
- Don't be afraid of palliative care. It's not hospice. It helps you keep all of your medical things together and gives you a safe space to say "I'm scared."
- Find a support group. It helps to talk to others who "get it."
