As odd as it may sound, I truly believe that I have been (relatively) fortunate with my ALS symptoms so far. Sure, walking and talking have become a whole lot more challenging and tenuous for me, and activities such as eating, shaving, showering, getting dressed, and stair climbing have become de facto group activities but at least my breathing hasn’t been compromised. Or so I thought.
Every three months or so, I take a trip up to the ALS Clinic at UCSF for a half day visit with nearly a dozen different clinicians and caregivers who specialize in varying aspects of the symptom management of the disease. One of those specialists, a respiratory therapist, administers a test that measures one’s FVC (Forced Vital Capacity) or lung strength. The test, in which I empty the air from my lungs (after a deep inhale) into a mouthpiece attached to a machine, yielded a somewhat less than desirable result: a 68%. Compared to the 90% I blew the last time I took the test, the 68% marked a precipitous decline (although I suspect Fehmeen was not-so-secretly disappointed that I went from an A- to a D+).
All in attendance, from me and my entourage to the various clinicians, were quite non-plussed about the numbers. In fact, we were so confused by the results that we decided to take the test again. And again. And again. And with each time I took the test, my numbers became more dismal than the one before. In fact, the only thing more dismaying than the numbers themselves was the accelerated future the results portended: a nearer now than ever future of Bi-Pap breathing devices and surgically implanted PEG feeding tubes.
Considering that I haven’t experienced any shortness of breath episodes nor have I noticed any appreciable difference in my ability to breathe, I decided to take the FVC values under advisement. Why should I allow a name, or in this case, a number, dictate how I’m supposed to feel on a day by day or minute by minute basis? Besides, I had a secret weapon hidden away in my arsenal: I was going to have the test readministered, along with several additional ones, at the pulmonary labs at my local Kaiser Permanente offices.
Yesterday’s appointment marked the fourth occasion in the past year-plus that I had occupied the wooden swivel chair inside the rectangular glass booth built for one. As Kim, the technician, led me through the battery of tests, she shared with me the results as quickly as the computer would allow her. My score on the FVC test was a 78%, a 4% improvement over the 74% I blew on my first test there over a year ago.
Now, I share with you this information not to show up the fine folks at UCSF in any conceivable way, shape, or form. In fact, quite the contrary is true. This Friday, I will be meeting with a doctor to discuss my Bi-Pap options. I am also giving more than cursory contemplation to the idea of a PEG; both ideas and measures that will most likely figure into my future.
The main reason I bring up my two competing FVC results is because I felt overwhelmingly compelled to share my “good” news. It has been my personal experience in living with ALS these past twenty months that 99.99% of the news I have received in regards to the disease and it’s effect on me has been categorized as bad news so you’ll have to excuse me as I take a quick celebratory victory lap (in my wheelchair, of course). I won’t go as far as ordering the bumper sticker that reads, “I have ALS and my FVC is 78%”, because 78% is only a C+. Maybe when I get back into the A range…