I’ve gone through life afraid of numbers. Not just math—I’m really terrible at that though. Numbers like “37”: the life expectancy of someone with CF, a number that was even lower when I was growing up. Numbers like “4”: the amount of antibiotics needed to treat a single bacteria, and the large number of side effects that comes with each drug. Numbers like “1,” “2,” “3,”: the growing number of sick people in my workplace, inevitably going to give me their germs. Numbers like “50”: the percentage of lung function I swore to not drop below before getting a cure for my disease. Numbers like “18”: the percentage my lung function dropped to this past summer. Numbers like “8”: the liters of oxygen per minute I needed just a couple weeks ago.
The number that petrified me was “26” these past weeks. 26% of lung function left. My entire life, I’ve been watching that percentage dwindle down, then plummet. I did these things called PFTs (pulmonary function tests), where I blow into a machine that tests various measures of breathing to estimate how much lung function remains. I used to do the test every three months, but more often as I grew sicker in recent years. The past couple years, it’s been every week or two.
Every glance at the number on the screen following the test adds crippling worry, making it even harder to breathe. Some tests have been impossible to complete because my anxiety is so extreme that I can’t take in a deep breath and blow it out—a very simple human action. Breathing.
“Don’t worry about it, it’s just a number.” How many times have I heard that? Why do the test if it doesn’t matter? How do I not worry when I’m being told a particular number is one step closer to dying? There is so much to the number, so much. It’s a timer on the screen, counting down to an expiration date.
The average lung function is 80-120%. I was at 26%.
So imagine how it felt today when, just a couple weeks after receiving new lungs, I sat behind that PFT machine and blew 49%.
Wow. And the great news is that, unless some huge obstacle gets in my way, it will only keep rising for the next several months. Soon, I could be at 120%.
The test hurt big time. It felt like my stitches were getting ripped out of my chest and I had to nap a couple hours afterwards because of the exertion. But I feel so at peace. For once, I can look forward to the number rising rather than falling.
And I can feel at peace because one of my buddies, Zach, is in the OR right now getting new lungs. He’s in Connecticut, but we can make this journey together. And then my friend, Sabrina, who has been fighting rejection in her newly transplanted lungs, is finally escaping the ICU after more than a month. She’s in Ohio, but we can make this journey together. And my friend, Kathleen, who got a new heart and lungs half a year ago after battling pulmonary hypertension, is inspiring me with her blog about the various milestones she’s been hitting since transplantation. She’s in San Francisco too, and we can make this journey together. (Check out her wonderful blog at rosecoloredmask.wordpress.com).
The four of us don’t need to watch our PFTs drop anymore. We don’t need to be bound by numbers if we don’t want to be. We can focus on “one more year gained” rather than “one more year until…” We all have what it takes to carve out our dreams and take control of our lives. Transplant patients have many deadly obstacles, yes. But we are armed with the experiences of our past diseases and are ready to make the most of the extra time we are given. I think all four of us are excited more than anything else.
Once again, I want to encourage you to be an organ donor, and release someone from the fear of numbers. Visit organdonor.gov for more information and to dispel any myths that might make you hesitate. Or just talk to me about it all. Don’t take your health for granted, please. Nor your organs. You could save a life.