Friday, February 19, 2016

Parody Video

If you haven't seen this parody video of Katy Perry's "Roar", stop what you're doing and follow the link below to watch it. It's seriously so encouraging to fellow CFers like me to see so many awesome people with CF doing amazing things. We will not be ignored!

parody video

Monday, February 15, 2016

Recent IV journey

It's been a month since I last blogged. Much has happened in the last month. My PFTs have been declining over the last few months. In September, my PFTs were at 62%. On January 26th, I went to the doctor to do PFTs. They were at 52%. It was time to attack the bacteria in my lungs with heavy duty IV antibiotics. I went in the hospital on January 27th. Usually, I start IV antibiotics at home. My parents have been doing home IVs since I was 8 months old, and I have learned how to take care of my IVs all growing up. I hate going in the hospital (let's be real, who enjoys being inpatient?!). I never sleep well, and I just like being home much more than being confined to a hospital bed. However, my doctor wanted to put me on an IV antibiotic that I had previously had an allergic-type reaction to, so I needed to be inpatient to ensure I didn't have a reaction. I was inpatient from January 27th-January 29th. Although the hospital was brand new, the rooms were huge, and the cafeteria food was actually good, the nurses and respiratory therapists did not know much about CF, and I felt like I was having to coach them to do what they were supposed to do. I sent one person away because she didn't get gowned, masked, and gloved (all CF patients have signs on their doors to gown, mask, and glove every time you enter the room). Several of the respiratory therapists seemed annoyed whenever I wanted to do my treatments for 30 minutes because they wanted to get to the next room. A nurse didn't understand why I needed to take my enzymes with food. Because I had no problems with the IVs, and I was desperate to get out of the hospital, I got out of the hospital relatively quickly. My mom was able to come stay with me for 2 1/2 weeks to help me manage my IV schedule and allow me to sleep to help my body recover.

The first week I am on IVs is always torture. My body just doesn't tolerate the medicines very well. I throw up multiple times a day from day 2-day 5; then, my nausea starts to back off. By now (almost week 3), I don't even need nausea medicine. It's crazy how different I feel this week versus week 1 on IVs. I'm very grateful that I feel better after a few days and that I don't feel as cruddy the whole time on IVs like I do those first few days.

My week 1 appointment was disappointing. My PFTs were the exact same as they were before I started IVs--52%. The second appointment was a little better; my PFTs were 58%. I would like to get them back up to 62% or higher like they were in September. Last Wednesday, my doctor added a third IV antibiotic to help get some more benefit from the IVs. I will go back this Thursday to evaluate my PFTs again and either finish up IVs or go one more week.