Jodi Fillmore was in the best shape of her life more than four years ago when she entered a bodybuilding competition.
When the event was over, she had beaten all of her competitors except one, and had designs on a professional bodybuilding career. There, she could compete full-time and earn prize money.
But soon after that brief moment of glory in September 2011, she noticed that she was becoming sick more often. Accordingly, she was not able to work out as hard as before.
“It was the fittest I'd ever been, and I was looking forward to future competitions and possibly receiving my pro card eventually to add to my resume,” she says. “Unfortunately, I started battling with repeated upper respiratory infections, resulting in a shift of priorities. Until now, that was one of the most challenging and self-disciplined accomplishments I can recall. I have other goals too, but I mention this one in particular because I still want to compete one more time, only this time take first place.
I'm definitely not giving up, I'm going to keep striving forward!”
After years of suffering from breathing problems that her doctors had attributed to asthma, Fillmore, 49, of Sarasota, was diagnosed as an MZ Alpha-1 carrier early last year. Soon after that, she began weekly augmentation infusions.
She attended the Alpha-1 Foundation’s Education Day in Orlando last November, and began thinking about a possible fitness program to help Alphas stay as healthy as possible.
“Life is about having goals and dreams, hope, faith and belief,” Fillmore says. “That's what keeps people going. I know how blessed and fortunate I am, especially after attending the Orlando Alpha-1 educational conference. I guess I just want to inspire others not to give up on their hopes and dreams.”
John Walsh, co-founder and CEO of the Alpha-1 Foundation, is receptive to Fillmore’s idea.
“AlphaNet did an outcome study named Step Forward to evaluate engaging the Alpha-1 community in increasing their exercise and mobility,” Walsh says, referring to the not-for-profit health management company that is associated with the Foundation. “It would be great if we could take Ms. Fillmore up on her offer to create a fitness program for Alpha-1.”
In her job as a personal trainer, Fillmore’s forte is “corrective exercise.” She works with many elderly clients, and some young adults – on post-rehabilitation for knee, shoulder and hip replacements.
At one time, her own personal, weekly fitness regimen could shame even the most hardened gym enthusiast.
Before she started getting sick, she was working out for two and a half hours a day, six days a week, exercising a different part of her body each day, including weight lifting, squats and lunges, and some cardio. Now, she works out for “just” an hour a day, five or six days a week. She also takes weekends off from her workouts a lot more often.
“By the end of the week, I’m literally exhausted,” she says. “I sleep a lot more than I used to.”
Throughout much of her life, she suffered from asthmatic bronchitis, and was diagnosed with asthma.
Although she never smoked, her breathing problems got worse around four years ago, while she was living in a rented home in Venice, Florida. She noticed that she was getting sick more frequently.
For years, she says, she could smell something musty throughout the house, but the landlord – who had bought the property out of foreclosure and refurbished it -- told her there was no problem.
“I started getting sick and I was sicker all the time,” she says.
She eventually learned that there was a leak in the roof, and the resulting moisture had led to the formation of mold throughout the house. The mold contributed to her breathing issues, she says.
The landlord, however, never disclosed that there was a problem. “I think he obviously cut some corners” on the renovations. A friend told her, “Jodi, I think this house is making you sick.”
She moved out of the house in 2013, eventually settling in Sarasota.
During this time period, while still suffering from frequent upper respiratory sinus infections and bronchitis, she lost her health insurance along with other benefits as her former employer merged with another fitness company.
Doctors said she was suffering from allergic bronchopulmonary allergy, or ABPA, a long-term allergic reaction to mold. But they would not do anything more for her because she did not have health insurance.
“I basically got dismissed. That was pretty frustrating.”
After the Affordable Care Act went into effect, Fillmore obtained a primary care physician who sent her to an allergist. Then, she was sent to an immunologist. The immunologist sent her to a pulmonologist.
“Basically I got shuffled from one doctor to another. I had to be very proactive. I had to push all these doctors, because everything was just coming back as just asthma. I know my body so well. I wasn’t going to take no from these doctors and just deal with it.”
Her pulmonologist finally administered a free test for Alpha-1.
“He said I’m going to go ahead and test you for this, but I really don’t think it is. But I’m going to go ahead and test it anyway.”
He did not share the results with her immediately, but sent her back to her immunologist, who sent her back to the pulmonologist again.
In November 2014, she finally got some answers from the pulmonologist.
“He says, ‘Oh by the way, your test came back for Alpha-1.” The level of Alpha-1 protein in her blood was low, he told her. A nurse would later inform her that she was an MZ carrier.
Without a prognosis, and with her bodybuilding career now seemingly out of reach, she worried about her job as a fitness trainer.
“It was like hearing a death sentence for me because I don’t know what I would do if I couldn’t work. It’s not like going to work. Literally, it is my passion. I identify myself through my work. My clients really keep me going. I love what I do. My biggest fear is that I’d have to go on oxygen.”
Between January and November of last year, she says, she lost 30 percent of her lung function.
Franck Rahaghi, MD, at Cleveland Clinic told her in August 2015 that her alpha-1 antitrypsin protein levels were low enough that she should start on augmentation therapy. She currently gets weekly infusions.
Working strictly on commission from her clients at Crunch Fitness, she pays for her own health insurance out of her earnings.
“If I’m not working with a paying client, I’m not getting anything. When I’ve been sick, it’s hurt my financials immensely,” she says.
Because she is a top performer at the fitness center, her employers have allowed her to retain a higher percentage on her commissions. This makes up for the days when she is sick, and cannot train anyone.
“They have been very helpful as far as that’s concerned.” She adds, “None of this would have been possible without all of my clients’ trust in my abilities. I am very thankful for the clientele I have.”
In November, she attended the Education Conference in Orlando, where she was inspired by “many wonderful people” who changed her outlook on Alpha-1. She would like to focus a fitness program for Alphas on cardiovascular workouts to improve breathing issues.
“I’m a firm believer in God, and I have extremely strong faith,” she says. “I believe we all have a purpose. I’m in the perfect situation to spread the word about this disease. I think what God wants me to do is to educate people and inspire people. That’s what I want to do is to inspire people.”