When I was diagnosed with cystic fibrosis (CF) at the age of 5, my parents were told I would only live to be about 8 years old. That used to be the life expectancy for those living with cystic fibrosis. Today, because of the amazing advancements with medical technology, the life expectancy is now in the 40’s.
CF is a progressive genetic disease that affects all the mucous secreting organs. It causes repetitive lung infections producing scare tissue limiting the ability to breathe and removing lung function. You can learn more at www.CFF.org.
My first of many lung infections started with a collapsed lung when I was a teenager. Over the years, my disease became more and more debilitating. There were countless hospital stays, sometimes for weeks at a time. By the time I was in my thirties, I was wearing oxygen 24/7 and my lung capacity was only around 30%. Breathing became very difficult.
Fortunately, when I was a very young girl, I was healthier. My parents allowed me to try anything I wanted and encouraged me to be active. I skied, tumbled, ran around, and I began figure skating for fun. I ended up excelling in skating and at the age of fifteen, I started living away from my home state of Minnesota to train on the East Coast all while living with cystic fibrosis and CF related diabetes. I would fly home to see my health care team, sometimes have a quick hospital stay then head back to practice.
I ended up being on the United States National, International, and Junior World Figure Skating Teams as an Ice Dancer. I was hoping to be on the Olympic team but unfortunately, I was hit in my car in an accident causing injuries to my back and hip. Although I was devastated my skating career was finished, CF was not the reason for the cause.
Having CF, I always knew of the importance of exercise. Helping move the thick sticky mucus around so I could cough was just as important as daily treatments. After my accident, the severity of my pain prevented me from being active for a couple of years. I ended up having more frequent hospitalizations. It seemed every time I was discharged from the hospital, I was being readmitted with severe lung infections.
Since CF is a progressive disease, each year became more and more difficult. After I turned thirty, my health really started to decline.
For seven years, I wore oxygen 24 hours a day. I spent nearly forty hours a week attached to machines for treatment. For months on end I would have to have a tube sticking out of my chest to deliver I.V. medications, and I spent countless days in the hospital with reoccurring lung infections.
Talks with my CF care team started to become very serious about lung transplant. Luckily, I was deemed a good candidate and made the decision to be placed on the lung transplant list. It was my only option for relief with my breathing and survival. I had hope I would feel good someday.
The three years while I waited on the transplant list, breathing became so challenging even washing my own hair was a struggle. I couldn’t walk up more than two stairs at a time before I was out of breath gasping for air, I was terribly underweight due to the absorption issues that go along with CF but also because I was burning so many calories just trying to breathe. The daily exhaustion overwhelmed me.
My most difficult challenge was staying alive long enough to receive my new lungs. There were some days I wondered if I would survive.
Despite many difficult days and nights, I was not giving up my fight to live and I always looked forward to the next day.
I was fortunate to receive a life-saving double lung transplant at the University of Minnesota Transplant Center in August 2013. Now, I am running up flights of stairs, hiking mountains, spreading awareness for organ donation, and enjoying life to the fullest! I am even back on the ice as a figure skating coach! What once was a only a dream, is now reality. These are only a few of the things I am able to accomplish due to the wonderful gift I have received.
I wrote my donor’s family a few times and two years after my lung surgery, I received a letter from my donor’s mother. I have a picture of the nice young man that selflessly checked the box on his driver’s license to become my donor.
I am forever grateful for the gift I have received. I look at my donor’s photo and I honor him every day by putting my hand on my chest and taking a deep breath, because I can.
In 2017, I also became a tissue recipient. I can’t ever express the gratitude I have for my donors for enhancing and giving me the greatest gift of all ~ The Gift of Life ~