For Patients Caregiver Tips and Advice For Medical Professionals

Mindy C.

Mindy C.

Primary Sclerosing Cholangitis

My story begins with a diagnosis of Primary Sclerosing Cholangitis in August of 2012. After the diagnosis, I required numerous stints to be placed in my bile duct through a procedure called an ERCP. This procedure helps to determine the progression of this incurable disease called PSC, and helps with the functioning of the bile duct and ultimately the liver. As this disease progresses, the liver becomes damaged and scarred and loses functionality. I was told that in most cases of PSC, patients will require a liver transplant in approximately seven to ten years after diagnosis. My case is special, I was diagnosed with a rare cancer called Cholangiocarcinoma in September of 2015.

Obviously, my disease progressed rapidly, resulting in a cancer that only has a 20% survival rate. My husband and I were ready for the fight! We had two choices: 1. Remove the affected bile duct, and hope the cancer hadn’t spread to the liver or pancreas, or 2. Radiate the bile ducts with a state of the art breaky therapy treatment killing any cancer left behind, but also destroying the liver. This would start the clock on the necessity of a liver transplant.

After consulting with our wonderful doctors at the Cleveland Clinic, led by Dr. Menon, we determined we would “Go Big or Go Home!” I received chemotherapy, radiation and internal radiation to eradicate this aggressive cancer. This extensive treatment weakened my body, especially my bile ducts, and resulted in drains placed in my bile ducts to keep my liver functioning. I was placed on the transplant list following my last internal radiation treatment. I believe I spent more time in the hospital than I did at home.

My family and I stayed strong and hopeful for a transplant. My husband kept family and friends updated with my situation through a website called The Caring Bridge. The support was incredible! During the holidays, my husband shared his concern for my deteriorating health and posted his picture ringing a bell in front of a red Salvation Army bucket with the caption “Calling All Livers!” I was amazed at the
outpouring of support from family and friends that contacted the Clinic offering to become living donors to save my life!

In January of 2016, my friend Karen Ciolek and her husband came to visit me at my home. My husband and two daughters were sitting with me when they arrived. Karen bent down beside me to tell me that she was going to be my living donor! I instantly looked at my daughters’ faces and saw complete joy and relief! In that moment, I knew that everything was going to be okay. Karen showed no hesitation as we went through the transplant together less than two weeks later, on February 1, 2016! Karen is an amazing and strong person that has humbled me beyond measure. We have always been great friends. I know that God had a plan for us when he put her in my life over a decade ago. I have been greatly blessed with the most selfless gift of all, the gift of Life! I do not take this gift for granted and wake up thankful each and every morning. My mission now is to share with others how incredible and life changing this gift can be, and share the importance of organ donation with the public  so that many more lives like mine can be saved in the future. I personally understand the challenges that come with Liver Disease, and hope that I can make a difference in the lives of others through my experiences.


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