Wow! I can’t believe I am going to be a junior in high school! My sophomore year wasn’t the easiest, but I made it! The summer before my sophomore year they found Mycobacterium Abscesses deep in my lungs. I missed the first week of school due to a port placement to start IV antibiotics. My mom, my nurse, was trained to access and de-access my port so I could still play sports. I play volleyball, basketball, and fast pitch softball. Sports help me stay healthy, work my lungs, and keep me mentally healthy.
The new meds made me sick, I was nauseous daily. As the meds worked I lost weight, weight I fought so hard to gain. Three months passed and twenty-seven pounds lighter they switched me to oral antibiotics only. Life was getting a little better. Still not feeling the best I forged on! Four months of oral meds, weighing in 30 pounds heavier (thanks to McDonald’s chicken nuggets and chocolate shakes) and my FEV1 was still increasing they finally said I could be done with the meds. My new goal was to maintain my numbers. June my numbers decreased a little and back on oral antibiotics I went. It’s a roller coaster!
I was diagnosed with Cystic Fibrosis when I was 2 days old. Born six weeks early, Dr. Ocejo was on watch and I gave him some signs that made him test for CF.
When I was younger my CF made it difficult for me to gain weight. After a G-tube placement the weight became a little easier to put on. Vest and neb treatments were considered maintenance, like brushing your teeth to avoid cavities.
I had my first CF hospitalization when I was in 5th grade. I really didn’t even consider myself sick until then. Everything I did was just my normal. I still don’t really look at myself as sick, but I did know that I had to do treatments and take pills to stay healthy and active. I have been in the hospital a couple times since then, but last summer was the longest.
My mom tells me how fortunate we are to have all these amazing people that are here to help us.
CFA of ND makes it so much easier for us to travel back and for to Minneapolis for my appointments. I had to make many trips this past year and I hate missing school! We would fly down in the morning and back the same day. CFA provided financial assistance to make this easier for us. I have also been on some amazing medications that have helped me stay healthy and many of those came with a big price tag! Again. CFA helped ease the cost of those meds and helped me stay healthy.