A Patient’s Perspective by Campbell Bryan
About me and CF
I lived a normal life in Richmond, VA and was very active as a child. Around 1996 (age 13) I started to develop a persistent cough and constant infections where I was prescribed antibiotics by my pediatrician. We realized it was CF by age 17 after having a new allergist dig deeper and order a sweat test.
Since being diagnosed, I have been a runner and have been dedicated to ensuring my lungs are healthy and clear. I went to the University of Georgia and moved to Atlanta after graduation to begin my career. I have lived in New Orleans, Washington D.C. and am now back home in Richmond working full time as a software Product Manager.
Around 30 years old my mucus production and lung function took a turn and became harder to maintain. This was approximately 5 years ago (I am 35 years old), and I was using an air bladder vest. I couldn’t seem to get the mucus up and out – each month I felt more breathless and was starting to need IVs more often to keep my lung function up. This turn was legitimately the scariest thing I had been through in my life.
For 30 years I was able to live a normal life as long as I did the checklist of lung homework. Imagine not being able to catch your breath and you can never catch it; day after day it’s still not caught. The anxiety is a survival instinct and almost freezes your life. I started realizing that if my lung function continued to go down, among the many things that would change, ultimately my career wouldn’t be sustainable, and my life would be shortened. I knew I had to figure out how to get the mucus moving.
I started doing my air bladder vest while running or walking on an incline on the treadmill. The heavy breathing of the exercise produced more mucus when coughing than the bladder vest alone, however, still not enough to maintain my lung function.
I was introduced to the AffloVest, which was not the same experience as the bladder vest, thus my initial assumptions were that it wasn’t as effective. I quickly realized the biggest advantage of the AffloVest: I can inhale while doing the vest! After 3 months of using the AffloVest and increasing my inhaled hypertonic saline from 1 vial to 2 vials, mucus started pouring out. I am easily able to keep my lungs clear and maintain my lung function of what it was in college. There are specific techniques I do to achieve this maintenance:
- I start doing my AffloVest while inhaling albuterol and standing up (I’ve setup Percussion, Vibration, then Drainage all on high for 12 min each). I use pillows to make a stand up desk on my bed so I may work on my laptop and keep my back straighter than if I were sitting (slouching makes for less productive coughs).
- I then switch to my first hypertonic saline vial, which begins my productive coughing (productive meaning mucus coming up and out). For my 2nd hypertonic saline, I will lie down on my stomach, which usually increases production. For my pulmozyme (mucus thinner inhaled), I will stand up and loosen the straps so I can expand my lungs while breathing that in. Ultimately, I will do 12×3 twice, so a total of 72 minutes using the AffloVest and inhaling. Occasionally I will do 3 hypertonic saline vials. I always loosen the straps when my body knows it needs deeper breaths to move the mucus.
- I choose to have an XS so I can keep it super tight or loosen it as needed during my treatment sessions.
Why do I think the AffloVest is the best of what I’ve tried (The Vest®, The Monarch®, Electro® Flo 5000)? With the AffloVest, my entire lung surface is getting a solid shake. There are 8 motors, and the way the fabric holds the motors, it allows for contact with all areas of my lobes and not one lobe is ignored. The ability to shake more lobes at once = more effective! The AffloVest is comfortable enough where I can lie down on my stomach and get the most mucus up mid-session. The AffloVest has 3 straps that I can adjust easily to get the right size lung expansion/cough to get mucus up, meaning, if I have a big cough or realize I am trying to breath more deeply and my lungs can’t expand because the AffloVest is too tight, then I will loosen the chest straps quickly and get a great cough, *while* still having my lobes motorized, just less tight.