It's almost April...my favorite month of the year....it's my birthmonth AND it's National Donate Life Month. Two things I LOVE celebrating :) I'll be turning 36 years old...I cannot even believe I am that old (in CF years that's OLD) lol. I remember when I was very young and was attending CF CAMP I knew a few of "the old" CFers who were like 18 years old and very sick, wearing oxygen...and I remember thinking "I hope I live to be as old as them"...there just was very few people with CF who lived into their adult years...
It's just such a miracle to have lived long enough that I was one of the first patients to get pulmozyme.... a VEST system...then Tobi...then hypertonic saline...then Cayston...and although I've never taken Kalaeydeco I've lived to see all these advancements. I remember when a guy from camp named Charlie sold pizzas to raise money for his lung transplant..and it was still a very new procedure. I remember so many "new and breakthrough" treatments for CF. I remember when they first discovered the gene that caused CF in 1989 (I was just 10 yrs old). They knew so little about it when I was growing up. I feel like it was just a very misunderstood disease compared to what they know now.
Who remembers manual CPT? That was the ONLY type of airway clearance.
At CF camp, we had mandatory CPT time...like 3 times a day. Our camp counselors were responsible to do it. We had foam wedges to get better drainage. Pretty much my entire family knew how to properly do manual CPT with the cupped hands, it's all in the wrists...lol. Nebulized albuteral was about our only home prevention..well that and the giant syringe system for home infusions of antibiotics...I remember when I first got the medicine diffusion balls & those were an AMAZING invention that made home IV treatments soooooo much easier.
I remember watching so many kids and young adults close to my age die from CF. I was very young when the reality of Cystic Fibrosis became too real to me. I had to deal with things most
kids my age never even thought about. It was hard to process...I couldn't understand why some kids with CF did better than others. Either way I prayed I would live to be an adult. Those prayers were definitely heard.
My life has changed so much...but I'll never forget, I don't want to forget. My life with CF has made me who I am and looking back is just a reminder of what I survived and how far I've come. I had many hard things to endure...but for every thing that was terrible, I had amazing and beautiful experiences, friendships, life long lessons, and faith building moments...all of these things helped create the person I see when I look into a mirror. I don't know how many people can say that they truly like the person who stares back at them...but I surely do.
Save a Life...Be Someone's Hero... Be An Organ Donor!
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