Erica's Story

As told by Erica Van Dorp

3 minutes. Multiplied by 12.
The first number is how long it now takes me to make a bed. The second, how long it took before my double lung transplant.

My name is Erica, I am 23 years old, I have Cystic Fibrosis and I received a double lung transplant five months ago. When I was born the doctors diagnosed me with CF and told my parents I had a life expectancy of 26. From day one a ‘normal’ life to me meant a handful of medications at every meal, two hour long physio treatments multiple times a day, and visits to the doctor every 12 weeks. A small glimpse of what having CF meant I had to do, and that is what I believed everyone else did too. As I grew up, however; I learned that was far from the truth and I was very different. Being a kid, it was impossible to explain to my friends why I had to take medications at lunch time, or why I couldn’t go to their house after school and to sleepovers due to me needing medical treatments; I didn’t fully understand it myself. My family helped me to be a kid as much as possible, but I often felt like the odd one out. I always hated playing hide and seek because I was found so quickly due to my heavier breathing. As I began to understand my disease, and why I needed all these treatments I became very regimented. It was extremely challenging and at times I wanted to quit, and sometimes I did; but I suffered the consequence, 14 days in hospital.
My parents helped me a great deal when I was young, but as I got older I became more independent and did most of my treatments on my own. My mom would nag me to do things when she saw I wasn’t, made me frustrated at the time, but I always knew it was out of love. When I was 18, I was diagnosed as a Cystic Fibrosis Related Diabetic. It flipped my world upside down. I was doing really well and suddenly I had a whole new beast to learn about, understand and control. My lung function really started to drop and I was in and out of hospital every six months. The doctors began throwing around words like lung transplant and lung failure. I was terrified. I wasn’t ready for such a major life altering surgery, but I was even less prepared for my life to end. My mom and I had a lot of hard, and emotional conversations. It took me several months of doubt, questions, fear, anger, and sadness to finally find my strength and determination again. Then it was 122 days of anxiety waiting for that call. The call that would change everything I have ever know. Everything my family and friends have ever known me to be. After we hung up the phone, the only thing I said to my mom was, ‘I’m so happy’.
I spent a month in hospital and two more after that going to the hospital daily. Rehabilitation physio, doctors appointments, blood work, X-rays, medication changes, lung function test. Some days I felt like a lab rat but every single second has been worth it. I have hope again, and my dreams in life aren’t such a blurry distant picture anymore.


Page Last Updated: 09/04/2019