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My Battle with Primary Sclerosing Cholangitis

It was October of 2008 when I got the call every man dreads. I had recently seen my family practitioner for a routine check-up. The call that followed was not the one expected, instead, the doctor indicated there were some numbers that did not look right and we needed to talk about follow-up tests. My liver enzymes were off the charts and I was directed to a gastroenterologist for follow up testing. The next three months was one of the most terrifying periods of my life. My new specialist began running test after test, each test eliminating one more possible cause, usually the best possible cause of those remaining. Not knowing was the most frightening part. I also developed a love-hate relationship with Google as I researched every possibility, and finding each possibility more horrifying than the one before. Finally, a diagnosis was reached in January of 2009 –Primary Sclerosing Cholangitis (PSC) and I began the process of being placed on the transplant list.

Posing with Pinewood Derby Winner. I was gaunt and jaundiced from PSC.

My constant fatigue now made sense. I simply thought the fatigue was from having a new baby in the house. My fifth had been born in July and, as any parent knows, adjusting to a newborn’s schedule is exhausting. Plus, I was working full time, leading a children’s ministry, and running a Cub Scout pack. Why wouldn’t I be exhausted?

As I quickly learned, the three biggest challenges I now faced every single day were the overwhelming fatigue, the mind-numbing itchiness, and a constant chill. To help other’s understand what it’s like to live with PSC I often describe the fatigue as like the fatigue you have the day after a great endeavor – like working in the yard all day or possibly pulling a double shift. However, with PSC, every day is like that even though the day before was typical and you got 10-12 hours of sleep. The itching is like getting poison ivy, all over your body, even in your ears. It is constant and never ends. The chill is deep so much sometimes that your bones literally ache. 

Chimney Tops, Great Smokey Mountains, 7 months-Pre-Transplant. It was a challenging climb but we all made it.

That’s what every day was like living with PSC. Simple everyday tasks like taking a shower or brushing your teeth seemed like exhausting feats of strength. I was constantly scratching my chest, my arms, and my legs. I usually spent 10 minutes scratching my ankles alone when I got home from work and took off my socks. I always wore a hoodie. Even when it was 90 degrees outside in the middle of summer, I was wearing a hoodie.

Doune Castle, Scotland 20 months Post-Transplant. Wanted to visit Scotland for decades. Finally made it.

I spent nearly six years waiting on the list – waiting for my health to deteriorate to the point when I was the priority. Just because I was waiting, life did not stop. I still had a family to provide for, to preside over, and to protect. It was just more challenging when every day was a battle. However, on October 21, 2014 I was given the gift of life. The battle didn’t end that day. It took a long time to rebuild my strength, my energy, and my outlook on life. Along the way, I have been fortunate enough to witness my two oldest boys earn their Eagle Scout. I have been able to watch my children play their hearts out on their school basketball teams, taking State Championships. I was able to travel to Scotland with my wife and some close friends. I have had a second chance at life. A chance to continue to provide for my family. A chance to continue to preside over my family. A chance to continue to protect my family.

Awarded Most Inspirational Student Dave Hanson’s Gateway Karate Dojo Began studying karate with my kids 6 months Post-Transplant.

As part of rebuilding my strength, I joined my son in studying karate at the dojo. Over the last three years, I have been participating multiple times a week in a class with young adults, all on the path to becoming Black Belt leaders. When I started, I was barely able to stand on one leg. I could hardly kick above my waist. My stamina and strength were weak. It was a challenge to keep up with the others in the class. However, recently I achieved the rank of a Purple belt, which is three ranks from Black Belt. I am lean, strong, and energetic, easily keeping up with if not surpassing teenagers in my physical ability. In addition, at a ceremony, I was recognized as the most inspirational student.

I am so grateful to be alive, to once again experience life to its fullest. It would not have been possible without the courageous and generous gift of life that I was given.

By Russell Creed

Check out this great Podcast with OutrageoU.S. on Itunes with Russell Creed.