One positive of Dave’s most recent admission was that he was treated by the senior physio. Words cannot convey the value that she has for me, for us, and I daresay, every adult with CF at RPA.
Dave and I are very valuable to her too. Since we are married and have accepted a certain level of cross infection risk she is able to use us as simultaneous guinea pigs to demonstrate chest clearance techniques. We have very different chest clearance needs and responses so she can make comparisons and give her colleagues or students exposure to different clinical scenarios.
Her tutorials usually follow this pattern:
“This is David showing incredible cough control. This is Janette trying to control her cough. And failing miserably.
This is David performing perfect autogenic drainage. This is Janette attempting autogenic drainage, which as you can see, is a work in progress.
Let’s listen to David’s lungs. Can you hear all of the crackles and wheezes? Can you hear those quiet bits where you should actually be able to hear breath sounds? Isn’t it interesting? Let’s spend a really long time taking turns listening to Dave’s lungs. Janette can merely observe because there is nothing interesting to listen to in her lungs. At all.
Lets look at Dave’s X-Ray and compare it to his last one in minute detail. We’d better look at Janette’s X-Ray too. It’s not normal but not too abnormal so let’s go back to Dave’s because his is really quite interesting with lots of pathology to talk through!
We can perfect our chest percussion technique with David. Janette, on the other hand, hates percussion so let’s try and work out how to handle a patient with strong ideas about what she will and won’t tolerate, who doesn’t have too much mucus to clear, and has very reactive airways. Can anyone come up with a plan to get the mucus out of her – without using black magic?
Let’s play with some toys! This is a PEP. First off they are going to show you classic PEP technique. Now they are going to show you how they PEP at home. Which is to say, how they absolutely corrupt the technique that I have so painstakingly taught them.”
And on it goes. The attendees come away with a very strong sense that CF is not a one-size-fits-all scenario, Dave is an absolute pleasure to treat, and I can be a bit, well, feisty.
Dave and I have been known to devote a Sunday morning here and there to hanging out with forty physios. We drag oursleves in carrying coffee cups and wiping the sleep from our eyes. It is too early for coherent conversation so Dave and I set up our treatment toys and mucus collection apparatus at our guinea pig station. Before long the senior physio launches into her talk with gusto, the caffeine kicking her passion up an extra gear. Dave and I have heard this talk a few times now but we always learn something new and give each other significant looks each time she makes a point which backs up one or the other of our vastly differing views about chest clearance.
At intervals she asks us to show our captive audience how to use a particular piece of equipment or perform a particular method. Importantly the participants then get a chance to play around with the toys so they know exactly what they are inflicting upon us. Even more importantly, in my view at least, our audience gains an appreciation about what chest clearance looks like in a real person’s life. Patients cannot and will not follow a textbook to the letter and it is naive to expect them to do so. Let me use two examples.
One new grad had a chat to me about how I use my flutter. “In Uni they taught us that you have to sit upright to use the flutter and you can’t watch TV because you won’t concentrate enough.” I think I may have just been able to restrain myself from snorting in laughter. Let me tell you that if I had to sit at a table with no entertainment then I would not flutter. Ever. Better I lie down, steadily work my way through all the TV series on Netflix and actually do my treatment than follow the above mandate and die bang on the mark of the average life expectancy.
The senior physio makes a point that according to the literature exercise alone is not an effective mode of chest clearance. Apparently it can become quite effective if one stops at intervals to clear mucus and/or does a chest clearance activity post-exercise. I was duly asked if I do chest clearance post-exercise. “That would be a no. Between a morning chest clearance and nebbing session, commuting for two hours per day, full-time work, dog walking, dinner cooking, dish washing, doing some of Dave’s physio, more nebbing, showering and sleeping – I don’t have time!” It’s a helpful reminder that the ideal health management strategies are great in theory but hard to implement in practice when you are, you know, living an actual life.
In between these tutorials Dave volunteers to help teach the students visiting the respiratory unit at RPA. He receives an extra and extended physio session and they receive targeted feedback on their technique. Word has travelled far and wide that Dave is a) available and b) a source of knowledge, encouragement and gentle correction. They leave his tutelage vastly improved and almost as good as me.
During his latest admission, one of the physio students – let’s call her Super Keen Bean – made quite an impression. Her lipstick matched her stethoscope. That is Commitment (with a capital C). She was also the first student to volunteer for the deluxe night shift experience. That is Crazy (also with a capital C). When Super Keen Bean entered Dave’s cubicle for the first time she squealed in excitement, I kid you not. She had specifically asked for the priviledge of treating him and was a tad star stuck.
What can I say? His celebrity status at RPA is unshakeable.