These past few weeks have been insanely hectic and stressful for me. I've been in and out of the hospital twice; both times spending exactly five days being admitted. They've been trying different drugs with me trying to figure out what works, what doesn't, and all that jazz. Basically I've been stuck in bed either sleeping, doing some kind of art, or working on the very large stack of school work I'm trying to keep up with. Before I start the main purpose of this article I wanted to say a few things about my current health situation. All my friends and family have been very concerned about my health lately, I've been getting constant texts asking how I'm doing. To be honest, I don't blame them at all. Being told I needed to be re-admitted was the most devastating thing Ive heard in a while. I was furious at the world; but not for long. I needed to get over it, get the meds done, and knock out this infection.
My pulmonary function test (I also call it a PFT for short) had showed on September 28 that my lungs weren't improved enough to end antibiotics. So that night I went home, took the longest shower EVER, packed my bag and off to the pediatrics floor we went. The reason for being re-admitted is because they were going to put me on this great IV medication called Vancomycin. Vanco is awesome. It works fast and treats all kinds of infections. However a common side effect is when you're given this medicine you get Red Man's Syndrome. It's a reaction that happens to a lot of people who go on this drug. Basically the name says it all. I got insanely itchy, worse than anything I've ever felt. I started overheating and turned a lovely shade of bright, lipstick red. Really attractive; I know. This wasn't the first time I reacted badly to it, so we decided to stop the dose of Vanco to instead try a new antibiotic called Ceftaroline Fosamil. It's a fairly new and very rarely-used medication, due to its price and strength. None of the nurses had ever even heard of it before. After just a day and half of this med along with a stronger form of Prednisone through my PICC, my lung function had increased by quite a bit. from 2.02 all the way to 2.30. I was also able to do a pft without coughing during the test. I know that doesnt seem like a huge accomplishment but being able to do a PFT without coughing for the first time in years was an amazing feeling. I had forgotten what healthy lungs felt like. This has all been happening in the blink of an eye, it was like one moment I was getting better, and the next I'm back in the hospital. It's crazy how things work that way, right? However Im very grateful for the wonderful nurses I have, and that I'm finally getting better. I have since gotten my PICC line pulled out and I'm finally back to normal day to day life.
Onto a different topic, Im writing this week to explain what the daily life, and activities are life for someone with cystic fibrosis. I have to do nebulizer breathing treatments, physical therapy, and take loads of pills all day. This is how a typical day would go for me:
Wake up somewhere between 5:00 to 5:30 a.m. I must start my therapy by max 6:15 or else Ill be running late. (I somehow always manage to be late anyways.) My physical vest therapy and nebulizer treatments run for about 30 minutes, give or take a few. This is all depending on how well I'm breathing them and what meds I'm on. Then Ill take about seven morning pills, eat breakfast, and my mom and I are in the car, driving to school by 7:00 a.m. I'm in school all day until and the bell rings at 2:19. In December, I would have drama rehearsal at 3 until 5 on Mondays and Wednesdays, and every week day I go to the mountain for ski practice until 7 or 8. On the weekends I'm at Gore mountain by 7 a.m. and instruct until 3, both Saturday and Sunday. Some week nights I might also have youth group at church, a singing lesson, or chambers singers rehearsal. Depending on what activity I have that day, I won't get home from anywhere between 6 to 9. Once I'm finally home Ill take more pills, eat dinner, shower, do another 30 minutes of my vest and then my all homework. Some nights I'm not even able to get into bed until 11:30.
That's just a normal day for me. However keep in mind I'm also non-stop coughing during classes, taking multiple large pills with every meal; three with every snack, and even more for other health issues every morning and night. I could take anywhere from 40 to 60 pills a day. But to me it seems like nothing. The amount of medicine I take daily doesn't seem like much either, but I will say traveling with all my treatments and machines is such a hassle. I absolutely hate taking my vest and machine places. Its so heavy and bulky. But if I'm going somewhere for more than two or three days I must have my vest and all my proper treatments. Even though taking my meds places is super annoying I don't know what I would ever do without them. CF isn't too much of a struggle for me to manage since I've grown up doing all of this, however its not easy or always fun. Until next week, thank you for reading and please continue sharing my articles!
