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Tools and Technology | My Cayston Community™
I was born in 1985, before many cystic fibrosis medications, treatments, and advancements were discovered. In fact, I was born even before the CF gene was found! I was diagnosed with CF at birth and cultured Pa years later. While growing up, there were still so many questions about CF and Pa, and I felt that my future was unsure. But, as my disease progresses, thankfully, so do medical advancements.
Today, there are many options for treatment and care. For example, there are many types of machines for airway clearance: hand percussors, PEP and OPEP devices, and the vest. There are now even portable vest options, which are still relatively new, but becoming more common as CF patients with Pa become adults that need to juggle meds, work, and family. Being able to fit my treatments into daily life has been so important in improving my breathing symptoms such as coughing, wheezing and mucus production.
Being able to fit my treatments into daily life has been so important in improving my breathing symptoms such as coughing, wheezing and mucus production.
I’m also thankful for technology that helps with medical care. Online hospital portals keep patients and doctors connected with the touch of a button. I use my center’s “MyChart” system to schedule my appointments, reach out to my doctors, and check on my labs and tests results. It’s nice to have an online option that is so easy to access because I like to be involved in my care and stay educated about my own health. At-home spirometry is also a great way for patients to be involved in their care and to monitor their lung function from home. I use the app associated with my at-home spirometer to connect my data to my CF Clinic. Besides testing lung function, the spirometer also has breathing exercises and games on it.
The spirometer was especially helpful during the COVID-19 pandemic. I could stay home and test my lung function before I had my telehealth visits with my CF care team so they could stay updated about how my lung function was doing. I also use my spirometer to monitor my FEV1 when I’m feeling sick. It will come in handy for pre-and post-hospitalizations too. Although I am happy to say that I haven’t been hospitalized in over a year now (*knock on wood*).
There are many programs that can help with coverage for some of these devices, so you should reach out to your CF care team or the CFF Compass program if you need assistance. Many apps and other devices that you can also use to help manage your health are free. I have found and used many different apps to track my exercise and daily steps, food, sleep, and more.
Integrating technology into my life helps simplify many aspects of my day, but I have found it particularly useful in managing my CF and Pa. I’m glad that I live in a time when technological advancements can stay ahead of the progression of my CF and Pa, and I can’t wait to see what the future holds!