In the past decade or so, I've learned that when people in the CF community find out I'm an opera singer, or that I don't use a vest as an airway clearance technique (ACT), they often assume that I must have a “mild” form of CF.
On paper, my CF should be just as deadly or disabling as others' -- I have the most common CF mutation (F508del) and I'm in my third decade with Pseudomonas aeruginosa colonized in my lungs. So, in all honesty, when someone tells me that I must just be “lucky to have a mild case,” my initial response is to get a little bit angry . . . it seems like they're discounting all the work I do to stay healthy, and it feels really dismissive of the effort that I put in.
More recently, however, I've come to understand that when someone assumes that my CF is “mild” by nature based on what they see from the outside, it's not that they're being dismissive of me. It's just that they don't actually know that airway clearance CAN happen effectively without a vest, because they haven't experienced it.
It's not that I don't need airway clearance -- I definitely, absolutely do -- it's just that I use methods that rely much more on my own internal awareness and breath control, and less on external devices.
As a professional singer I've cultivated strong breath control, and as a registered yoga teacher I've been trained in many yoga pranayama breathing methods (pranayama). So, for me, it's only natural to use breath-based airway clearance methods -- particularly autogenic drainage, which is lesser known in the U.S. but very common overseas.
As I've been teaching yoga to people with CF all over the world for the past few years through CF Yogi and Beam, I've learned that many people in the U.S. don't even know that there are other valid airway clearance options and alternatives to a vest. Last fall I led a panel on airway clearance options at BreatheCon with Pamela Scarborough at Beam, a CF physiotherapist and yoga teacher from the U.K. who has used yoga in her clinical practice. The response was so overwhelmingly positive that CF Yogi recently collaborated with Beam on a class, Yoga for Airway Clearance, for people with CF.
For me, ACTs are most effective when they bring me into in the moment, fully present in what I'm doing and feeling in my lungs. Huff coughs, autogenic drainage, pranayama, oscillating positive expiratory pressure (PEP), and even singing have been my magic mix. I bring my awareness to what I'm feeling, and tailor my ACTs to respond to those sensations in the moment.
I've practiced my ACTs enough that now I can target my breathing and my movement to clearing specific areas of my lungs based on what I feel and hear when I breathe. The sensation of feeling what's happening inside is very important to making my ACTs effective, which is why I prefer not to use a vest. The drone of a vest makes me mentally tune out, and the vibration masks any subtle signals that I may be getting from my lungs.
When I need some external assistance, I like oscillating PEP better because the oscillation helps to shake things loose, but the sound isn't nearly as grating. And as a bonus, my breath-based airway clearance habits mean that I can travel anywhere without lugging around heavy equipment. My inhaler and oscillating PEP device are everything I need.
To be clear, it's not that external devices are bad -- I know that many people use them and love them -- they've just never really been all that helpful for me, personally. To me they make airway clearance feel more passive, and I just don't get the focused and active engagement from using them that really makes for productive clearance.
But, the past few months have thrown me for a loop. After a couple of months on Trikafta™, I found that the techniques that I'd always done for airway clearance were no longer working like they used to. For a while I couldn't tell whether it was because there was nothing to cough out anymore, or what. But when I started feeling noisy crackles in my lungs about six weeks in, I knew that indicated something was there that needed to get out.
I tried every airway clearance technique I knew. I tried a bunch of different settings on my vest, did autogenic drainage, huff coughs, PEP, exercise, singing, yoga, playing my tin whistle ... you name it, I tried it. The fluid dynamics in my lungs just felt DIFFERENT, and I couldn't tell how to get the junk out.
My home spirometer began to show a drop back to where my numbers were pre-Trikafta, so I started a two-week course of antibiotics, and was frustrated when -- after a week -- I felt no change.
But then, I had a brain wave. I realized there were some pranayama breathing methods that I knew about but had never really practiced before, because they'd always felt out of reach. My brief attempts hadn't gone well when I first tried them years ago, so I had mentally written them off as not available to me.
So with my new less-sticky Trikafta lungs, I thought I'd give them another shot. I started experimenting with yoga pranayamas and techniques like breath of fire, uddiyana bandha, and a deep relaxation breath. And they WORKED!
I began integrating these Eastern breath practices (yoga pranayama) with Western physiotherapy breathing techniques (autogenic drainage and FET), and physical yoga postures (asana) into my personal yoga practice.
It was everything I ever loved about yoga combined with everything I knew about how to clear my lungs using my own breath
My CF clinic has always been super supportive of my choice to use autogenic drainage and encouraged my new explorations of yoga breathing methods alongside it. With my CF care team, we've always focused on care options that enabled me to keep singing professionally, traveling the world, and supporting what is important to me. (In fact, my CF team has even referred other patients from my clinic to my classes at CF Yogi!)
Through these experiments, I found that I did have stuff down there, and I COULD get it out. As I grew more confident, I learned to re-interpret the sensations in my lungs and respond with beneficial breath and movement.
It has become a routine I actually look forward to every morning to start my day.
I am hooked. As long as I've got this chronic lung infection in my body, I know that it will take daily, active management. But finally, I have something I can do that doesn't feel like I have to tune out my awareness to just get through it. I can actively participate in my own daily health.
In this life of chronic, invisible illness where there is so much beyond our control, this is one small way where I can see what is within my control and respond accordingly.