When I was 2 months old, I was diagnosed with Cystic Fibrosis. My entire life has consisted of being poked and prodded. One of my first IV’s was actually in my head because I was so dehydrated, they couldn’t find a vein. I have scars trailing up and down my arms from PICC lines, IV’s, and arterial lines. I have six bullet wound like scars on my ribs from chest tubes. I have a thin, white scar along my chest from having it cracked open three times. Once to remove fluid from around my heart and twice from double lung transplants.
With todays advancements in the health and medical industry, medication is finally becoming available for those with Cystic Fibrosis. These medications are not just a life changer, but a life saver. Medications like Orkambi and Symdeko can lessen the worst parts of CF. The constant coughing, the sticky mucus build up, it can increase appetite. Right now, this is what we are fighting for. We are fighting so babies don’t have to have IV’s placed in their head, we are fighting so patients don’t need to have transplants, we are fighting for our lives.
I walk for Cystic Fibrosis because I don’t want anyone to have to go through was I went through. CF has shown me to be grateful for what I have and to appreciate all the small things in life. I may have Cystic Fibrosis, but Cystic Fibrosis doesn’t have me.
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