As the youngest of four and the only boy, it was already difficult for me to find a place to shine, but I have a little shadow following me behind.
This shadow was an unusual shadow. Other people couldn’t see it but me, and a few others already had a shadow of their own. This shadow is called Cystic Fibrosis (CF). CF is a genetic disease that affects my immune system. I was diagnosed at birth and it never let a ray of sunshine creep over my head.
I’ve been with CF for sixteen years now and over the last few years I’ve had to be hospitalized several times for pneumonia and because my lung functions have become very low; my doctors have recommended me for a double lung transplant.
This disease causes mucus in the body to become thick and sticky. This glue-like mucus builds up and causes problems in many of my body’s organs, especially the lungs and the pancreas. People who have CF can have serious breathing problems and lung disease. They can also have problems with nutrition, digestion, growth, and development. You may not see it, but those who do have it, can spot it.
The disease generally gets worse over time, to the point where there’s no return, death. The life expectancy for people with CF has been steadily increasing over the past 40 years. On average, people who have cystic fibrosis live into their mid-to-late 30s. There is no cure, no human, or ray of light that can extinguish this shadow.
At a young age I couldn’t tell why my shadow was different from others. I didn’t realize why the kids in school stared at me, asked unusual questions, or picked on me until the age of six. Even then it didn’t really bother me. I knew I was smaller than some of the other kids and had an occasional cough, but I didn’t think it was enough to change the way I was looked at or treated.
My days are a lot different from the average kid, it always seemed gloomy and dark. My mornings consisted of waking up for my cup of tea and breakfast made by Mom. Then immediately after, I take about 12 pills for my morning dosage of medication, and another 4 pills every time I ate. It’s a hassle to keep all of it down, especially when my lungs are being squeezed, so I happen to breathe with my stomach. After that it’s treatment time, my only part of light and release from the damned shadow.
My treatment times consist of 3 nebulized medications and the use of a chest psychical therapy machine called “The Vest”. First it begins with my albuterol puffer, my saline neb. (Which takes 10mins), followed by my Vest (30mins), then my dornase neb. (25mins) and last my Tobi neb. (25mins). A total of approximately 1 hour a morning of just treatments for my lungs alone, I do this again at night daily. Then it’s off to school. The place I call “Hell”.
Through pre-k and elementary is was sunny years, only until about the seventh grade where I came to figure that I’m slowing down, losing light, and don’t want to do much anymore. After that the repetitive hospitalization began.
When I’m in the hospital or home on IV antibiotics I attempt to keep up with my school requirements, most of the time I can get it done, but there are sometimes that I’m just too sick.
My plan is to graduate high school and attend college. Just like my elder sisters, 2 of which, also have CF. My sisters are an inspiration as they have made it through high school and attend college, one is now 5 years out with her second double lung transplant but unfortunately we lost our youngest sister to this disease last October.
My eldest sister does not have CF and is currently working on achieving her PhD. They all beat their own shadows and shine brightly amongst their friends and colleagues. I’m just hoping one day, I too, get the chance to shine with them.
Read more:
My upcoming double lung transplant
My successful double lung transplant
