When your life is already jam-packed with nebulizing medications, why would you add one more?
Before you can walk a mile in a person with CF's shoes, you have to put on a nebulizer.
At first, it was easy to get my son to do his cystic fibrosis treatments. But as he got older, he started to hide his medications, rather than take them. I finally learned how to get him to see the importance of taking his medications.
The imagination can run wild thinking of all the possible scenarios that could happen after trying the new triple-combination modulator, Trikafta™. Managing expectations -- while allowing yourself to hope -- is how I choose to approach my wait for the new drug.
Having already been underwhelmed by Orkambi® and Symdeko®, I was skeptical about whether the triple-combination therapy would live up to the hype. However, after a month of being on Trikafta®, I feel improvements in my lung function, weight, and overall energy.
I am both excited and scared that my son will be old enough to try Trikafta when he turns 12 later this year. In some ways, I can hardly wait to see how he will benefit. But I also know that he might experience side effects, and I don't want him to have any setbacks.
As a CF pharmacist, I've received many questions about complementary and alternative medications and supplements over the years. Although I am admittedly not the first person to “jump at the idea,” I always make sure to stay informed about available products and listen to my patients without judgement so that we can partner together to develop the best treatment plans for them.
When the news of the Trikafta™ approval came out, I was simultaneously excited for people with CF that would benefit and disappointed that another new medicine is passing me by. But, hearing about the next wave of research into a cure for ALL people with CF has me looking forward to the future.
We depend on antibiotics to help us control and get rid of dangerous infections. But, in addition to the near-miraculous power to heal, many antibiotics come with serious side effects, too.
I began taking prescribed medication to control my cystic fibrosis-related pain. Soon, the medication tried to control me.