You ever heard of the game Russian Roulette? A person puts a gun to his head and he doesn't know if a bullet will come out when he pulls the trigger. How about a Major League baseball prospect who uses a radar gun to determine if he is going to get signed by a scout? Or maybe you have a test to take and you realize you didn't study the right material when you see the questions and you know that test counts for 90 percent of your grade.
What do all 3 of these things in common? The results could vary but regardless there is a lot is riding on them.
That segues perfectly into the PFT or should I say the Russian Roulette of cystic fibrosis. The PFT or pulmonary function test is a test that has a patient breathe in and then blow out as hard as he or she can three to four times and the results give you several numbers but one in particular which determines a lot. It's called the FEV1 and this determines how much you breathe out in the first second. This number can determine antibiotics, hospital stays or even being put on the transplant list.
I go to the clinic tomorrow to take my Russian Roulette, I mean PFT. This appointment is sooner than normal since my numbers have been down. Over the past few months, I've experienced some tightness in my lungs so I've combatted it with the only thing I know how...being aggressive with medicine and working out every day like there is no tomorrow.
Over the last few months (other than some of our travel days), I have been putting in 45 minute workouts including lifting weights, ab workouts, 1,800 jump ropes and 600 jumping jacks per day. I'm running between 1 and 4 miles per day and did the Peachtree Road Race in record time in July. I'm working out with a trainer once or twice a week. I'm doing three 45 minute therapies each day and cutting down to two on the weekend. I've added swimming laps to my routine. They're not typical laps though. I swim to the end of the pool (not regulation length) and back without a breath six times (taking breaks in between) and then do a few other laps in between. In comparison, a few years ago, I would be lucky to do half a lap without a breath. I've gained some weight which is good with CF but I'm now trying to eat a little better so that the gain is mostly muscle and not Rice Krispie Treats...I mean fat. Ha Ha! I am also doing research by asking questions to doctors and finding out what kind of machinery works for patients (my nebulizer machine blew while I was in Europe - thank goodness I brought a portable backup device) and have bought a new cleaning device as well as a new nebulizer machine. What hasn't changed is taking 40 to 50 pills per day and being anxious about tomorrow's PFT.
Two months ago after a bad test at the doctor, I went home and the next day did about 15 PFT's. The average person should do 3 max! Needless to say on the last one, I blew so hard that blood came out of my throat and onto my portable device. I was freaked out, exhausted and deflated. And for the last few months I've been gun-shy about doing a PFT for the fear of low results and obviously blood spewing out.
CF requires giving it everything and some days it's about giving it more. While this doesn't always make a difference in the numbers, it makes a difference in how one feels mentally. I still deal with anxiety and depression and I know it's not easy on my family. I go months closing myself off but I'm working on that. It helps to have the strongest person I know in my corner, my wife. Without her, I seriously do not know where I would be.
There are a lot of bright spots right now. Vertex Pharmaceuticals is working on a triple drug combination that will finally include my genotype. It will probably be available in 2019 but maybe even as soon as 2018. The swimming has allowed me to have time with my kids and become an Olympic Champion at finding dive toys. I realize even more how amazing my wife is and how fortunate I am to have her. Finally, life, while difficult at times, is still precious.
Live your dreams and love your life!
Andy
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