Join Team Kelf to Find a Cure for PSC

Primary Sclerosing Cholangitis is a rare autoimmune liver disease that affects the bile ducts. Most people with PSC live with life interfering and varying degrees of abdominal pain, fatigue, brain fog, nausea, itching, and, as inflammation increases creating fibrosis and cirrhosis, liver transplant will likely be needed. 

My story is both similar and unique to those of us with chronic disease. I was recently reminded that our stories are what helps others understand the need for research and support. And so, I have decided to be brave and share my story with the hope that I can offer support to those with chronic illness and to expand awareness. I was diagnosed with PSC when I was 45, after already living with Ulcerative Colitis (UC) since the age of 13. In my case, because I had Inflammatory Bowel Disease for so many years, my body decided that my gallbladder and bile ducts should be invited to the inflammation party. Not all people with UC will get PSC, but there is a well known comaraderie, and thus PSC joined. 

At that time, I was told that I’d likely need a liver transplant within 15 years and because of my history of UC, hopefully I wouldn’t get cancer first. Initially, I was started on one of very few medications available for PSC and was monitored with labs. I knew I’d live with UC forever, but adding on PSC, was incredibly overwhelming, to say the least. My children were teenagers, but I remember thinking realistically and morbidly, “OK, I can get them to adulthood, but I may never make it to meet future grandchildren” and I was devastated. I was facing a realistic future of the caregiver needing to be cared for, at best. I did not want my children and husband to be in that position, it just wasn’t fair to any of us. So, I forged ahead and continued to focus on my children and husband, work full time between a psychotherapy practice and as an adjunct professor at USC. I knew I had PSC, I worried, but it was not in the forefront of my physical life. It was only a couple years later, around age 47, that I started to experience symptoms that changed my life insidiously, but surely. Pain in my upper right abdomen was the first symptom and it would not stop. For the next few years, as pain increased and I slowly also developed itching, fatigue, brain fog, I went through surgeries and procedures (multiple ERCPs trying to open the narrowed bile ducts), liver biopsies, was listed for transplant, met with numerous specialists, went through numerous tests, tried everything available to me in eastern/integrative medicine and nutrition to address the pain and inflammation, and have needed to utilize numerous medications to give me some quality of life. Suffice it to say, I slowed down quite a bit as my pain, brain fog and fatigue became worse. I had to close my practice after 30 years, and 5 years later had to stop teaching after 20 years — a 34 year career that I was not ready to give up. At 54, I was on full disability. I was discouraged and filled with loss, powerlessness, anxiety, and worry. 

I have been fortunate that I have not needed a transplant so far, however because of the years of autoimmune inflammation in my colon and bile ducts, I also live with increased risk of colon and liver cancer, and inflammation in other parts of my body. So, daily medications, daily fatigue/pain/brain fog/itching/nausea, labs often, many doctors, annual colonoscopies, annual MRCPs, and the worry of cancer and/or transplant, undoubtedly makes daily life an arduous task. I don’t know what each hour or day will bring and I struggle with often missing out with family and friends. It is a HARD existence. 

At 61, after 48 years of UC and 16 years of PSC, although I am more fortunate than others with these diseases, it is a constant struggle. I try to stay optimistic and hopeful while still being the realist that I am. My goal each day is to stick to my motto of finding joy while dealing with the shit. I have survived to experience my children flourish in adulthood, and I will be meeting our first grandchild this year. I know that UC and PSC, and as of a few years ago, SIBO (Small Intestinal Bacterial Overgrowth), and other autoimmune disease challenges are in my life forever. I also know that I will still likely need a transplant unless some other curative medications or procedures are researched and developed. 

I never take for granted that I am one of the luckier ones who hasn’t had liver failure or needed transplant…yet. I know that all disease sucks. PSC is only one of many, unfortunately. I hope that by sharing my story, it helps us realize and recognize that we need to do more to help find a cure.