meet Amanda

Amanda 1

Amanda's LungsAmanda-2

 

 

 

 

 

 

At the age of five months, my parents were given confirmation of my diagnosis. At five months old, I had dropped down to my birth weight of 6 lbs., sending both my family members and doctors into a panic. After testing, I was finally diagnosed with Cystic Fibrosis.

My first hospitalization, a case of pneumonia, took place when I was three years old. Still, the hardships of living with Cystic Fibrosis were not fully realized at such a young age. Upon the doctors’ suggestions, my mother enrolled me in ballet class. Dance quickly became a motivating passion, and has remained so throughout my life.

With the beginning of school, problems began to arise. Due to the lack of education about Cystic Fibrosis, an uncommon diagnosis, teachers and principals were hesitant in regards to my health, and especially my medications. In my earlier years my mother was required to come to my lunch period in order to bring me medications, such as enzymes.

At the age of ten, my second hospitalization occurred. Throughout the previous years, lung infections were simply treated with oral antibiotics. However, this case proved antibiotic resistant, and thus required vigorous antibiotic treatment. I was in the hospital for over a month, and required a PICC line to be inserted for further antibiotic treatment at home. This hospitalization was the first of many where I would be missing school and dance. This was also my first time receiving a PICC line. Still, being optimistic and trying to keep up in my classes at school, I was able to remain positive and cooperate with home treatments.

Another hospitalization of mention occurred in my eighth grade of elementary school. This hospitalization presented difficulties as well, and I was diagnosed with CF- related diabetes. This new adjustment was very difficult to deal with. Missing a month of my graduating year to high school proved to be discouraging as well. Still, with the lovely support of my school staff and my friends at school, I managed to keep my hopes up, keep up in class, and attend graduation.

High school began my true struggle. Throughout the four years, I was hospitalized at least twice a year, with three visits in my eleventh grade. When I was 16 and in grade ten, my paediatric CF doctor sent me to Toronto Sick Kids in order to be assessed for the possibility of a double lung transplant. I told them that I did not want to have a transplant, that I thought I was doing well. My main concern was that I wanted to graduate on time with my friends and continue dancing. Time off from these aspects of my life was not in my “plan”. I continued on as I said, and dealt with hospitalizations as they came. I taught myself the work that I was missing in class, and kept my grades up, and kept up with the other students in my grade. Yet, that same year that I was sent to Toronto, I had to stop dancing. My lungs could not keep up with my dancing demands, and sadly I had to retire at the age of 16. I believe this was the first nudge towards me accepting the fact that I was too ill to continue on my own.

After my high school graduation, I attended McMaster University. My first year was certainly a test. I did not do my greatest because I was frequently in the hospital, about once each season. After my first year, I was again sent to Toronto for an assessment. In June of 2009, I was placed on the waiting list for a double lung transplant. Throughout the summer, my mother and I travelled to Toronto for physiotherapy in preparation for my transplant. I decided to go back to school in September, but was hospitalized in October with a lung infection and the H1N1 flu virus.

A month later, a nurse appeared at my hospital room door asking if I was ready to go. I was then told that I had been put as critical condition on the transplant list, and there were lungs waiting for me. I was transferred to Toronto, with my friends and family all following behind my ambulance.

I will not lie, I was terrified. I did not know that I had been placed as critical, and my response was that other patients were sicker than me. I was wrong. My surgery took 14 hours, and I was placed on a heart and lung machine due to near heart failure. After my transplant, the H1N1 virus was still not responding to antibiotics and I was placed in a medical coma, with a triage, while doctors tried to fight the virus. Medication was flown in from New Zealand, and finally, one month later, I truly awoke and took my first breath on my own.

I spent an addition two weeks in the hospital, and was then discharged. My new life began. I was able to walk around Toronto without any oxygen, I was able to take the stairs without stopping after two steps. I did not wait very long to go back to school. In May of 2010, I began my second year of university and continued on with a life that was better than I have ever experienced.

I have almost completed my undergrad degree, and plan to graduate in June. My hope is to continue on to Law School. Likewise, I have returned to dance. I am now a dance teacher and love my job. I am also able to dance again. Not only am I able to dance again, I am able to dance unlike ever before. Throughout my dancing experience, I used to hold my breath while dancing, to prevent coughing fits, especially on stage. Doctors were amazed at how I could hold my breath for almost an entire routine. Dancing took over my entire self, and I was able to do anything in order to be out there on that stage. At Nationals in Florida, I had my coaches waiting backstage for me with oxygen and ventolin treatments. Now, I am able to dance an entire routine with ease. The gift that I have received not only allowed me more years with my family and friends, but it also allowed me the ability to dance, even better than I could before. Dance is my outlet, and has always been a large part of my life. I truly believe, that without dance, I would not be who I am today. The environment, the skills and the ability to express myself, are the most positive and empowering aspects of my life. Music never fails to move me, both emotionally and physically, and now because of my gift of lungs, I am able to embrace that without any boundaries.