I finally feel like I'm strong physically again. I had a rough last few months. In mid-February, I was put on a new medication called Bronchitol, which is not even FDA approved here in the states yet. For a month, I really felt like I was invincible. Exercising became easier, I was tired less and I just felt this overall boost of energy. I think I started to really believe that I could go nonstop and began to fill up my days with activities and commitments and I think in the process I just ran myself ragged. To make a long story short, I caught a bacteria that I have had before called pseudomonas. My doctor then put me on an antibiotic called Tobi to fight this and I started seeing an immediate decline in my health, so much so that when I went to my cf clinic on April 26th, my pulmonary function tests showed that my lungs were functioning at 37% of a normal person of my age, height and weight. This was a big shock to me. The realities of having cystic fibrosis started setting in and I was not in a good place.
My doctor agreed to have me try a couple of oral antibiotics first as putting me on IV antibiotics hasn't seemed to boost my PFT's in the past. He believed I may have been having a reaction to the tobi and so I immediately stopped that. My breathing tests were a little bit better 2 weeks later and I have slowly been feeling stronger each day since then.
Fast forward to today. I will be starting Kalydeco tomorrow! I am thrilled about this. It has been a long process but I am so thankful that God has led me to a doctor who really cares about me as a person and not just a patient. Kalydeco is a new drug that was just approved by the FDA to treat a rare form of cystic fibrosis. Although it was approved for only 4% of cases, it may help a larger percentage of patients. Patients who have been able to take this new drug are seeing dramatic improvements in health. I am so thankful that my doctor is willing to allow me to try this drug. I will be going on this for a 30 day trial period and if it is working, I will continue to take it. It works at the genetic level and not just treating the symptoms and it is just a pill! I am very excited for tomorrow:)
