PSC Awareness Day: Reid's Story

In June of 2014, just three months after we were married, Reid was diagnosed with Primary Sclerosing Cholangitis (PSC). 

His doctor explained that PSC is an auto-immune condition in which the bile ducts in his liver were very scarred, and could eventually lead to a liver transplant (the only treatment for this disease) or cancer in the bile ducts (cholangiocarcinoma), which is very deadly. There is no cure for PSC, and it would be a waiting game to see how it would affect his body. There was no "typical" timeline as the disease affects everyone differently.

At the time, we weren't exactly sure what to expect. I remember we went to breakfast after that doctor's appointment, to discuss what we learned and process it. To be totally honest, Reid was quite upset. He saw it as a death certificate (which is completely opposite of his usually optimistic attitude). I was of the mindset that it was all a MAYBE. Maybe he would need a liver transplant. Maybe he would develop cancer. But we have a diagnosis, and can watch it closely to hopefully catch whatever complications came early.

For the first few years, his case was pretty mild. He was also diagnosed with Ulcerative Colitis (UC) at the same time, and that was his biggest issue. He had a lot of pain due to the UC, and it took a few years to get that under control (he’s now in complete remission, thank God!)

Reid’s doctor’s continued to monitor him closely. In those first few years, he underwent several procedures and regular bloodwork, and we thought we had another 10 to 15 years before we had to deal with the maybes that his doctor first spoke of. 

In December of 2016, his doctor called just before Christmas. He said Reid’s latest test showed significant progression in the disease, and further testing would be needed. He referred us to a doctor that specializes in PSC. In March of 2017, shit hit the fan (excuse the expression, but that’s the truth of it.) Reid woke up in the middle of the night in severe pain. Three hours later (he’ll never live it down that he waited so long), he woke me to take him to the ER. He was in so much pain, I ran every red light on the way to the hospital. I’ll never forget that night. My husband is 6’8”, 210 pounds, and has an extremely high pain tolerance. I had no idea what was happening, but I knew it was bad.

Several hours later, the doctor’s determined he had cholangitis, a potentially deadly (if not treated) infection in his GI tract. And he was borderline septic. The bacteria had spread to his blood stream and the doctor’s had to act fast with treatment. After a 5 or 6 day stay in the hospital, they seemed to have gotten the infection under control, but we learned that this was likely to happen again, as the PSC had worsened and this was a symptom of that.

A few weeks later, we were right back in the hospital with a second bout of cholangitis. At this point, his doctor performed an ERCP to see what was going on in his liver. And the news that came out of that will forever change how this disease affects our lives. He explained that Reid’s bile ducts were significantly more scarred than they were just a few months prior, and that he was concerned about how quickly the disease was progressing. He gave me the number for a transplant center here in Houston and said it was time to make the call. He also explained that with the scarring that he saw, Reid had a 90+% chance of developing cancer in the bile ducts, if he did not get a new liver soon. That was a hard day.

Since that day, Reid has been added to the transplant lists in Houston, Indianapolis, and Cleveland. Due to the fact that PSC mostly affects the bile ducts of the liver, but slowly causes cirrhosis of the liver, he does not rank high on the transplant list. His bile ducts are very sick, but his liver itself is not as bad as others on the list. But you can’t replace the bile ducts without replacing the liver. It is a huge hole in the system, and a real disadvantage to those dealing with PSC. I should also mention that after a transplant, the disease has a 40-50% chance of reoccurring in a new liver.

In May of 2018, Reid’s doctor found what he believes to be cholangiocarcinoma – the cancer in the bile ducts that we have been so afraid of. The cancer is very elusive, and very hard to detect. As of today, we have not had a test show that the cancer is there, but his doctor 100% believes it is.

PSC is ugly, it does not discriminate, and once you are diagnosed it is often a life-long battle. There is not a lot of research that has been done regarding PSC, as it is rare and only affects 30,000 people in the United States.

Our story with PSC is far from over, but we are determined to share the good the bad and the ugly to shed light on this disease. Our hope is that Reid will get a transplant soon and if he ever has the PSC return, there are more options available.

More information about PSC can be found in this short video.

To learn how you can help, visit grayliverdonation.com. 

Update: Reid received a liver transplant on January 14, 2019 and is healing well!