“A vacation!” I squealed.
“To where?” my husband asked.
“Anywhere! After Orkambi, I’ll probably be able to go anywhere. I read that someone traveled to Europe after years of being too sick to do much of anything…
…Ohh!! We can also go see Billy Joel at Fenway next summer! Remember how I was in the hospital when we had 7th row tickets 2 years ago and we had to sell them?
Oooohh…We can also visit your parents next Christmas!”
On a random day this past November, we were hanging out in the living room, watching a movie. My husband was sitting on the love seat, and I was laying on the couch, clutching the area of my chest where my lungs felt so tight.
I was taking a new medication, developed specifically for people with my gene mutation of Cystic Fibrosis. The medication with the funny name – Orkambi – held so much promise, but was known to cause chest tightness and shortness of breath in the initial stages of treatment.
My husband and I were okay with that – what’s a week or two, or maybe a couple of months, of discomfort, if it meant it would change my – our – entire lives? Continue reading