Living in Limbo with PSC and Finding Life Again
When Mark Chatterley first started feeling sick, nothing pointed to liver disease. He was a university student dealing with stomach cramps and frequent trips to the bathroom. Like many young adults, he assumed it would pass. His doctor did too.
At the time, they blamed his symptoms on student life—junk food, stress, and late nights. But the symptoms did not go away. They got worse.
That was the beginning of a long and difficult journey.
Early Symptoms That Were Easy to Dismiss
Mark's first symptoms were not related to his liver. They were digestive. He dealt with ongoing stomach pain and diarrhea that came and went, but never fully stopped.
At first, doctors did not take his concerns seriously. They assumed his lifestyle was the cause. It was only when his symptoms became severe—and included blood—that doctors began to investigate further.
He was diagnosed with a type of bowel disease. At the time, it did not even have a clear name.
Still, something else was wrong.
The First Signs of Liver Disease
As part of his treatment, Mark had regular blood tests. Each time, doctors noticed something unusual: he had slightly elevated liver results.
But again, they brushed the issue aside.
Doctors told him it might be due to his size or possibly fatty liver disease. No one seemed concerned enough to look deeper—until one day, everything changed.
Instead of routine results, Mark received an urgent call. He needed to see a liver specialist right away.
At age 25, he was diagnosed with primary sclerosing cholangitis (PSC), a rare liver disease.
Understanding PSC
PSC is a rare autoimmune condition. It affects the bile ducts, which carry bile from the liver to the small intestine.
In people with PSC, the immune system attacks these ducts. Over time, they become scarred and narrow. This blocks the flow of bile.
When bile builds up, it can lead to infection and more damage. Eventually, the liver becomes scarred.
Mark learned that the disease is unpredictable. Some people live with mild symptoms for years. Others decline quickly.
At first, he felt fine.
That did not last.
When Symptoms Took Over
Within 18 months, Mark's condition changed.
He began to experience:
* Severe fatigue
* Constant itching, especially on his hands and feet
* Pain and nausea
* Loss of appetite
The itching was one of the hardest symptoms. It did not stop. It disrupted Mark's sleep and caused him to scratch until his skin broke.
He also had repeated infections, though he did not know it at the time. These episodes are known as cholangitis attacks.
His body was under constant stress.
Facing the Possibility of Transplant
After his initial diagnosis, doctors told him he might need a liver transplant one day, but not anytime soon.
Just 18 months later, that changed.
His symptoms worsened. He became visibly ill. His skin turned yellow from jaundice. He had little energy and struggled with daily life.
At one point, his condition became so serious that he was hospitalized—right after his wedding.
Instead of a honeymoon, Mark spent weeks in the hospital.
Doctors began evaluating him for a liver transplant.
The "Limbo Decade"
Doctors referred Mark to a transplant center. But when he arrived, his condition had slightly improved.
He was no longer considered sick enough for the transplant list.
This began what he calls his "limbo decade."
For ten years, he lived in a difficult space:
Too sick to live a normal life
Not sick enough to qualify for a transplant
Over time, his health declined.
He could not work full-time. Then part-time became too much. Eventually, he had only about two hours of energy each day.
Simple tasks—like showering or leaving the house—used up everything he had.
He spent the rest of the day resting.
Finally Getting Listed
In 2020, Mark's condition reached a point where he qualified for the transplant list.
But timing was not on his side.
The COVID-19 pandemic delayed many medical procedures, including transplants. What should have been about a one-year wait turned into more than three years.
He waited three years and three months for a liver.
The Call That Changed Everything
One night, at 2 a.m., Mark received the call.
A liver was available.
He rushed to the hospital, where he underwent transplant surgery. The donor liver came from someone who had passed away.
When he woke up, he was surrounded by tubes and monitors.
But something felt different.
A New Life After Transplant
Even while recovering, Mark noticed a major change.
For the first time in years, he felt rested.
He woke up with energy.
The difference was immediate.
Although he faced some complications, including organ rejection, he still felt better than he had in a decade.
One of the most visible changes was the disappearance of jaundice. Within days, the yellow color in his eyes and skin faded.
Now, nearly two years later, he still checks his eyes every day.
They are always clear.
Finding Purpose Through Advocacy
After his transplant, Mark wanted to give back.
He now works with PSC Support in the United Kingdom. He serves as Operations Manager, helping improve the lives of others living with PSC.
His work includes:
Organizing patient events and webinars
Supporting educational programs
Managing systems and operations
Helping fund research
The organization also works closely with doctors to ensure patients receive accurate, reliable information.
For people with rare diseases, that matters.
Why Awareness Matters
PSC is rare. Many people have never heard of it.
As a result, patients often face delays in diagnosis and care. Mark's story shows how easily providers can dismiss symptoms, especially when they do not fit a clear pattern.
It also highlights the emotional toll of living in uncertainty.
But it also offers hope.
A Message of Hope
Today, Mark is living proof that life after transplant can be full and meaningful.
He has energy again. He has purpose. He is helping others navigate the same journey.
His story reminds others that even during long periods of uncertainty, progress is possible.
And sometimes, the call that changes everything comes when it is least expected.
