I was diagnosed at birth with Cystic Fibrosis and spent several weeks at Riley Hospital with my family so that they could learn to take care of me. Cystic Fibrosis is a genetic disease and the number one genetic killer of children and young adults. The disease causes excessive production of thick mucus. This causes sinus complications, severe lung infections, pancreatic & intestinal issues, as well as potential liver, kidney, and reproductive problems. The key to living with Cystic Fibrosis is prevention and one of the main reasons I’ve managed to cope as well as I have is because of the early diagnosis and treatment.
“Healthy” treatment started with pancreatic enzymes every time I eat, albuterol nebulizer treatments, and chest physical therapy which knocks loose mucus in order to be coughed up and excreted. These treatments take up to an hour, twice a day. As my disease progressed over the years, stronger enzymes were needed and more nebulizer treatments were added to my regimen: antibiotics, steroids, etc. “Sick” treatments start with a minimum 3 day hospital stay with treatments as often as every 4 hours and IV antibiotics, followed by home IV antibiotics for at least 2 weeks, sometimes lasting months. Eventually, I needed a feeding tube to maintain my weight and oxygen while I slept, which then led to oxygen with activity and then oxygen all of the time.
On March 10, 2014, I received a double lung transplant. I no longer need several of my treatments, but take more pills (easy trade off in my opinion!).
In this time I graduated from Purdue with my Bachelor’s in Construction Management, worked in industry for several years, and finished my MBA before transplant. Since transplant, I have again worked in industry and most recently, started my PhD at Purdue, researching sustainable communities.
I strive on my independence and struggled with not being able to do everything I have wanted due to my physical limitations and needing to rely on other people to perform daily tasks. I’ve learned what motivates me to care for my health, makes me feel better, and helps me accept me as me – who just also happens to have a disease.