My Organ Transplant Story
When I was diagnosed with a rare biliary disease in 2004, I never would have imagined that nine years later I would be waiting to find an organ donor. Yet by September 2013, my first thought every day was whether or not this would be the day. Every time I heard about a suicide or heard about a local death, my thoughts were on whether they were my blood type, were they an organ donor? On September 25th 2013 I did get the call, after six months of waiting I received a successful liver transplant.
The story begins when I was a three years old, diagnosed with Ulcerative Colitis, an intestinal bowel disease. I was advised by doctors that by ten I would need a colectomy, and by twenty I could expect to have bowel cancer. Despite these projections into the future, for thirty years I had maintained a decent enough quality of health. It was in my early thirties that I began to feel less well physically. I was a creative director at the time and was traveling frequently from my home in the Netherlands to Austria, Finland and other parts of the globe. Blood work concluded that my liver was not functioning normally, and an ERCP (endoscopy) ultimately led to the diagnosis of PSC (Primary sclerosing cholangitis). PSC is a secondary disease that affects 5% of those with long term Ulcerative Colitis, and the prognosis was that I would have end-stage liver failure within ten years. For me, that equated to death, and I went through a challenging time that was not unlike a life crisis, trying to come to grips with my decline in health, and at the same time deciding what I wanted to do with my life. Where did I want to live in the world and how? What was my purpose?
I decided that I would like to make a difference in people’s lives, to somehow make the world a better place in the way that would be most natural for me, and made a change of careers to follow my passion for yoga and alternative therapies and wellness. I became a yoga teacher, thai masseur, craniosacral therapist and Rolfer. Despite changing my work, diet and lifestyle, my health declined steadily after giving birth to my son in 2010. I succumbed to the disease, and for once, the medical prognosis was accurate. After several agonizing months in liver failure, I was placed at the top of the transplant list. Six months later I was blessed to find a donor and undergo the miraculous, complicated surgery. In a sense, this is where the story begins, as often times we take for granted the undercurrents of traumatic situations such as this one that can take longer for the heart and mind to resolve than for the body to integrate.
My gratitude to my organ transplant donor and her family is boundless; I have been given a second chance to see my son grow up and enjoy the wonders that life has to offer. I never thought I would see the day when I could see the whites of my eyes clearly and sleep through the night without being woken up by itchy skin or pain in my torso. I have kept a blog of my journey from illness through recovery that is accessible via the side bar on this page.
I also encourage all readers to become a donor in your country. It takes a minute and saves lives. You never know what your own fate holds, or those of your loved ones. Change lives. Dare to care and become a donor.