Ninety-five percent FEV1! It was a number I hadn’t seen since high school yet somehow I blew it on Monday, April 6, at my virtual doctor’s appointment from the bathroom in my basement, and texted my doctor the results. I was absolutely ecstatic! I was grateful.
And suddenly, I became nostalgic. It got me thinking about where my comeback had begun. It got me thinking about Lindy.
About a dozen years ago in 2008, I was sitting on an examination table at the Emory University hospital just after receiving news that although I had been on IVs for a few weeks, my lung function was still plummeting. I was down about 25 percent and my FEV1 was now in the sixties. I was used to having numbers in the low to mid-eighties. Another doctor once told me that as we get older, our lung naturally function declines. I hated hearing that, but even worse I started accepting it.
It was then I was introduced to a new doctor because mine was out of the country. Her name was Dr. Lindy Wolfenden and she was a CF specialist.
She saw tears falling from my cheeks. At the time, I had a two-year old daughter and a wife who was giving birth to our second child in about six months. Dr. Wolfenden had two young children, so I think she understood the pressure of being a parent.
I explained to her that this wasn’t supposed to be happening. Not now. I was dealing with both clinical depression and extreme anxiety, two things a therapist would later diagnose me with. I was having extreme allergies to a few of the IV meds that I was on. I’d had my PICC line pulled once only to have it re-inserted a few days later because my lung function was still declining. My kidney function had diminished quite a bit from the meds, too. I started wondering if I could ever get my pulmonary function numbers up again.
Dr. Wolfenden had a comforting smile but wasn’t afraid to tell me how it is. “Should I be scared? Should I freak out?” I asked her. Her answer, “Nah, I’ll tell you when to freak out.” She detected how scared I was though, and said something I would repeat to others throughout the years when they had difficult appointments. “These tests don’t tell everything. It’s how you feel that matters most.” Those words quickly comforted me. She never let me leave an appointment without good news.
I thought about what she said regarding the tests not telling everything. I thought about it all day and all night and then slowly began working out again. I couldn’t use my right arm because the PICC line was in it but I began to run. I started doing sit-ups and one-armed jumping jacks. I got back to playing tennis, though now doing it left-handed. In the next few weeks, my lung function increased back into the high seventies and therefore I could finally have the IV removed again.
It was that time in 2008 when I realized being a CF warrior didn’t mean I was simply born with CF. It was instead showing determination and heart when everything was working against me. In the next dozen years, I went from running a mile or two a week and working out three to four days a week, to now running 25 to 30 miles a week and working out every single day. My PFTs went from the low seventies to the mid-eighties over the last couple of years, and three months ago I hit 90 on my PFTs thanks to the assistance of Trikafta, a new CF breakthrough drug.
Now here I am, just minutes after seeing a 95 for the first time since I was a teenager and the one person I want to call is Dr. Wolfenden. The same year she began seeing me, the Emory School of Medicine established an adult cystic fibrosis program to complement its pediatric work. Dr. Wolfenden was its founding director. Her husband said, “She got into medicine for the people.”
Dr. Wolfenden and I forged more than a doctor-patient relationship. She would check on me and I would ask how she was doing, too. The latter became more important because in May 2009, Dr. Wolfenden was diagnosed with breast cancer.
Suddenly, she was the patient and I was the one trying to say the right words. She and I talked more frequently as she continued giving me good advice. One of the things she reiterated was, “Always have faith in your doctor.”
Dr. Wolfenden fought cancer like the warrior she taught me to be, but eventually passed away in July 2010 at the young age of 40. Her husband and their two boys threw out the first pitch to our annual Wish for Wendy Softball Challenge that same year, and we established the Dr. Lindy Wolfenden Fundraising Table, an educational booth about cystic fibrosis. The event has raised more than $4.5 million to benefit the Cystic Fibrosis Foundation.
I wish now I’d had a chance to show her my current PFTs. I wish I’d been able to tell her during the rough times that tests don’t mean anything. It’s how you feel that matters.
I’ll continue to thank Dr. Wolfenden by not letting a number on a sheet of paper define me and by giving it everything I have even when the odds are stacked against me—something she proved herself in the final months of her life.
Dr. Wolfenden revealed the essence of being a warrior.
I’m proud to follow in her footsteps.
Live your dreams and love your life.
Andy