This disease is sometimes referred to as the "Walter Payton Disease", as it is what the legendary football hero succumbed to in 1999.
PSC is a disease of the bile ducts and liver and there is no cure or treatment. A liver transplant can prolong the progression of the disease and improve symptoms, however even a new liver will eventually fail. Average lifespan after diagnosis without a transplant is 10 years. PSC increases the risk of liver, pancreatic, bile duct and colon cancer by nearly 60 times that of the general population.
In February, 2017 Kristin's condition became so severe that she relied on friends and family for help with every day tasks like going to the store, mowing the yard and even cooking meals. As a self-employed consultant, working on a consistent basis became impossible due to severe exhaustion, double vision, extremely high blood pressure, joint pain, anemia, from the disease and treatment progression.
Kristin is a single mom with two grown kids and a wonderful five year old that she was able to adopt right before her PSC diagnosis. "We fostered children for years and this little guy came into our house straight out of NICU. He was only 2 pounds when he was born and had no where to go. Because he was born at 26 weeks, his lungs were vulnerable to infection and developmental issues and we spent the first two years of his life in and out of hospitals. I used to call him my million dollar baby because his medical bills topped that within his first six months of life. (Thankfully, the state picked up this tab.) I never left his side in the hospital and knew that unless I could adopt him, he could be taken from me at any minute. He overcame tremendous odds and finally at age four, his adoption was finalized. Now he is a healthy five year old and I have to get that way for him. He's my inspiration. He starts kindergarten next week and I want to find a cure for PSC, I want to watch him grow into an adult. I want to be there for him. We only have each other."
Kristin is a very independent and asking for help is extremely difficult, but she knows she now has no choice. Single monthly treatments started in September and cost $37,000 per month. Insurance did pick up the bulk of the cost but monthly premiums are $856. "I have to have health insurance to survive. No matter what, I have to pay that premium."
In March, Kristin underwent an operation to have her entire colon removed. She had a second reconstructive surgery in July and spent nearly the entire month in the hospital. A third surgery is scheduled for September. With no income and mounting medical costs, her future is uncertain at best. "I want to keep my house, keep working, provide for ourselves but now I'm really under water. Lost wages since March has put me behind on everything. I know I may lose my house, my livelihood, and have to scrape to get by, but if I can just afford health insurance, I can be there for my son as long as possible. Everything else is optional at this point." If you can find it in your heart to help, any amount would not be wasted. Kristin is active in raising awareness of PSC and would give any extra funds to PSC Partners Seeking a Cure , an organization dedicated to clinical trials, awareness and research to cure this devastating disease.
Thank you for listening to my story and thank you so much for your support.
- Claudine Wargel
- Katie Levine
- Kevin Lumney
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