Age 13-A New Doctor, The Vest
At age 13, my doctor would retire. She and her husband were largely responsible for the amazing care that all CF patients received at the hospital. My care would now be handed off to another doctor. This doctor was no ordinary doctor as he also had Cystic Fibrosis. In fact, so did his brother, who was a nurse that I had a few times during my hospital stays. I was very inspired by my doctor. I couldn't believe someone with CF could become a doctor! My care would pass to three other doctors during the rest of my time here. I would ultimately leave and find care back in NJ when my parents found out that my old doctor and his brother were not doing well, health wise. In an effort to protect us from the truth, my parents decided my brother and I should seek care back in NJ. I was devastated when they told my brother and me that we would be leaving NY. I really liked my current doctor and the hospital. I wasn’t going to miss the commute or the very long appointments that we had. I would find out years later, the true reason for our departure.
Also at age 13, I would receive my first Vest airway clearance machine. I was very excited. This was a large machine that had two hoses filled with air that attached to a vest I would wear. There was also a cord that attached to what was almost like a soft black button, that when pressed, would inflate and vibrate the vest. I would set a timer for a few minutes while pressing the button. This accounted for the equivalent of one “position” that I used to do with my mother. Then I would turn up the frequency and/or pressure pretty high, and take a full breath and slowly exhale with an open mouth to loosen any mucus. This part replaced the part where my mother would vibrate her hands as I exhaled. Then, I would cough and spit as I always did. After each spit I would then increase the frequency and pressure just a little with controls. I could also do my nebulizer while I did the Vest. The Vest would allow me to do therapy at my own convenience, instead of whenever my mom was available. This was also beneficial for my parents, as now they didn’t need to fit two sessions of therapy into their day. My brother and I would share the Vest and we would take turns housing it in our respective rooms. The machine was rather large, very heavy, and took up a lot of space. Thankfully, it did have wheels on one side. Later models would be smaller and much more portable. On weekends and in the summer, we would often take turns using the Vest while we played Yahtzee for the length of our respective sessions. While the Vest provided convenience and independence, I was not always compliant. The Vest also didn’t quite compare to the effectiveness of CPT.
(This is the only picture of me with the Vest I have. I believe I'm in my senior year of high school or it's the summer after graduating.)
By this time, I had been doing two-week rounds of IV antibiotics at home. This would mean I had to miss two weeks of school, but that part I didn't mind. Just as when I was in the hospital, I would pace myself and do a little homework each day. Teachers often wouldn’t give me the full amount of work that I would have had to do if I had attended school. A nurse would come to my house and at first I would get simple peripheral IV's, but later on I would get a mid-line catheter placed in my arm. Because I didn’t feel well, it was a real chore to do therapy and eat an adequate amount of food. My mother often did my morning IV antibiotic, as I usually had to do IVs three times a day. It disrupted my sleep immensely to have to do the morning dose myself. When I was sick, I had no energy to do much of anything.
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