Too Sick For Clinical Trials, But Not Sick Enough For a Liver Transplant

In 2001 I was 27 and began suffering from fatigue. I attributed it to working full-time and raising a 2-year-old.

I made an appointment with my family doctor for a routine physical. They drew some labs and I received a voicemail a few weeks later. They said: “your liver enzymes are high, you have a fatty liver. Don’t drink alcohol, don’t take acetaminophen; exercise and eat a healthy diet.”

That seemed easy enough since I never drink alcohol and I didn’t take medications. I just needed to work on losing weight.

My PBC went undetected for years

My fatigue continued over the years. I followed the doctor's advice. I lost weight and attributed the fatigue to being newly divorced and now a single mom. I was working 12-hour days, full-time as a radiologic technologist. When I came home from work my nights and weekends were full running my son, a pre-professional ballet dancer, to and from rehearsals and performances.

In 2020 my son moved away to New York City as he was accepted into a ballet company. Life slowed down a little and I began dating. I met the love of my life and a year later we planned to be married. He was very active and loved going on hikes and biking. It was a struggle to keep up with him. We laughed about it because even though he was only six years younger than me, things shouldn’t be this difficult. I used to be able to do 12-mile hikes and now I could barely walk a mile.

The long road to my diagnosis

I made an appointment with my primary care doctor for new lab work. They called me in a few days and said that I needed to be seen by one of the local universities. They were very concerned about my liver enzymes being elevated.

However, this was in the middle of the pandemic. Major hospitals and universities were overcrowded and only available to those who were in need of emergent medical care. This I understood completely, because I, too, was working in the hospitals during this difficult time.

Once medical facilities began to open I was able to be seen by a hepatologist. They ran numerous studies to include detailed bloodwork, ultrasounds, endoscopies, CT scans, MRIs and eventually a liver biopsy. Finally in 2021, after 20 years of being treated for a fatty liver, I had a diagnosis causing my fatigue: primary biliary cholangitis.

Progressing to Stage 4 cirrhosis

The hepatologist explained to me that PBC can be treated by medication. And since mine went undiagnosed for so long I was already at fibrosis stages 2 and 3, which indicated liver damage. Once the liver becomes damaged enough, it can no longer heal itself. All we could do at this time was slow the progression.

I began the medication, and my hepatologist continued to monitor my labs and ultrasounds. In 2023, they called me to say that in 2 years I had progressed to stage 4 cirrhosis, and it was time to seek the consultation of the liver transplant specialist.

Being told I was not sick enough for a liver transplant

After waiting for 6 months, I finally had an appointment to see the transplant specialist. His words to me were: unfortunately I was too sick for clinical trials, but not sick enough for a transplant.

Most clinical trials have certain criteria you have to meet, and having cirrhosis can be an automatic disqualification in many. In order to be added to the transplant list, I was told my life expectancy had to be less than three months. My current life expectancy was 2-4 years.

Feeling angry and full of emotions

I left the doctor's office angry, sad and so full of emotions. I was depressed, I cried for days, and I was ready to give up. Thankfully it was my husband who came to me one day after seeing how defeated I was. He said to me, “babe, I love you and I don’t want you to give up. I want you to spend your time being happy and I miss your smile.”

He was right. I needed to take full advantage of the time I had left.

So we went hiking, we went skydiving, we spent my 50th birthday on a one=month road trip. We even traveled to London, England, to see my son dance. Here I am, 3 years later after I was told I only have 2-4 years left, still taking my medication to live and living life.