Unfortunately, I've heard these medications (more so, Kalydeco) referred to as a cure more times than I would like. They are NOT! They help fix the mutated gene, but do not completely correct/reverse it.
If Kalydeco was a cure:
- My lungs wouldn't be filled with bacteria-infested mucus
- I wouldn't still need to do 30 minutes of Vest twice a day (or more when sick)
- I wouldn't need at least 4 nebulizer treatments everyday
- I wouldn't need to swallow at least 15 digestive enzymes a day
- I wouldn't need several different vitamins and other various pills per day
- I wouldn't need to visit my CF clinic 3 hours away every three-four months
- I wouldn't have had an awful Spring with numerous episodes of hemoptysis
- I wouldn't need annual chest x-rays and blood work
- I wouldn't need a high-fat, high-calorie (watch the carbs & sugars though because you're borderline CF Related Diabetes) diet
|Dr. Dowell with Anna |
from my clinic appt
- Typically, CF patients exhibit a slow, steady decline in lung function over a few years time. My doctor kindly reminded me today that my lung function has been very stable over the last two years. Even when it declined during the beginning of pregnancy, it shot right back up at the end and has been stable since then.
- I have not had to increase my enzyme dosage which is also common for CF patients, which means my pancreatic function is stable.
- I've slowly and steadily been gaining weight over the last two years. This is one of the positives I have noticed over the last two years and have been very pleased with.
- I had a very easy, healthy pregnancy which may not have been the case without Kalydeco.