Living with Asymptomatic PBC, Waiting for the Other Shoe to Drop

When I was diagnosed with PBC over 20 years ago, my doctor tried to calm me by explaining that PBC progresses very slowly. I was in my early 50s, and his prognosis was that I would eventually develop symptoms and need a liver transplant by the time I was 70.

Now I am 74 years old, as of my writing this. I feel incredibly fortunate that I have still experienced little, if any, symptoms of PBC. But I also feel guilt. Many others with PBC suffer from severe symptoms like fatigue and itching. When will the other shoe drop for me?

Navigating a silent diagnosis

Back when I was diagnosed, routine blood work showed consistently high levels of alkaline phosphatase (ALP) and a positive antimitochondrial antibody test (AMA). My doctor and I agreed that the best course of action was to be hypervigilant, because for me this seemed to be a “silent disease.”

He recommended that we repeat my blood work every six months. Unfortunately, PBC may lead to liver cancer, and he recommended periodic abdominal ultrasounds to help with early detection. He ordered a liver biopsy to get a baseline for the condition of my liver. At the time, the biopsy revealed I had early stage three fibrosis with significant scarring.

He also ordered an endoscopy to see if I was developing varices. Thankfully I had no varices then (and still don’t now). Less invasive FibroScans have replaced liver biopsies, and I have these on a periodic basis. My last result showed cirrhosis.

The mental toll of waiting for symptoms

With the results of my ultrasounds and FibroScans showing significant scarring and cirrhosis, I am flabbergasted that I haven’t developed severe symptoms. Mentally I often feel like I’m “waiting for the other shoe to drop.” Is that pain in my right side the start? Is my dry mouth a symptom? Is that itchy rash I had last week the beginning? Is that feeling of exhaustion I had after biking the beginning of the end?

The physiological fatigue of worrying and wondering is often tough to deal with. But my gosh, I’m not as young as I used to be. Perhaps those symptoms are just part of the aging process, and I’m still OK. I hope!

I am a member of several blogs and PBC communities. So many PBC patients relate stories of having to quit work and go out on disability because the exhaustion and fatigue is so devastating. Or the poor folks who scratch themselves raw because of the itch. Or the grandparent who can’t play games with her grandkids because of severe brain fog.

I sometimes feel like one of the only survivors of a plane crash. Why me, why have I been so lucky? At times I have an overwhelming sense of guilt.

Facing misconceptions and stigma

Alcohol used to be a large part of my social life. My friends considered me the “funny drunk.” We were out one evening with friends several years ago and everyone ordered drinks. I declined, saying “doctor’s orders.”

A friend chimed in and asked, “What’s up. What’s wrong?” I said, “I’ve developed a chronic liver disease called primary biliary cirrhosis (PBC).” She said, “Ha it’s finally catching up with you, isn’t it?”

That felt embarrassing and derogatory. I told the group it was an autoimmune disease, and my doctor said it had little, if anything, to do with my drinking. I’ve given up drinking because my doctor said it would be best not to put any undue strain on my liver. Thank goodness we now call it primary biliary cholangitis!

Finding gratitude amid the uncertainty

Most of my friends now know I’ve had PBC for many years, and I quit drinking 15 years ago. So many say, "but you look great, you travel, you bike, you play golf, you swim and scuba dive." One friend even commented, “You’re the healthiest looking sick person I know.”

So, when is that other shoe going to drop? I still worry. This is the truth of being asymptomatic. It’s been 22 years for me with little or no symptoms. I’m still waiting for the other shoe to drop.