Resilience is something Ernie Johnson is well-versed in. A Beaver County resident and lover of Pittsburgh sports, Ernie’s journey with UPMC spans across his lifetime.
When Ernie was three years old, his parents noticed that he was experiencing motor difficulties.
“He would have trouble getting up onto furniture and walking up stairs. Ernie was a slow walker too. He didn’t start walking until he was about two years old,” says Ernie’s mother Susan.
Ernie’s parents scheduled an appointment with his primary care provider who said he simply had flat feet. Susan knew there was more to Ernie’s symptoms and reached out to a physical medicine and rehabilitation specialist.
After undergoing a biopsy and bloodwork at UPMC Children’s Hospital of Pittsburgh, Ernie was diagnosed with Duchenne Muscular Dystrophy (DMD) at age four. DMD is a condition that causes skeletal and heart muscle weakness. Common symptoms of DMD include difficulty walking, frequent falls, breathing difficulties, and progressive muscle weakness and atrophy.
Ernie’s parents were committed to empowering Ernie and his brother Adam, who was later diagnosed with DMD as well, to persevere through the difficulties of their condition.
“From age four, Ernie learned how to leverage and pull himself up using furniture. He’s always been a strong and determined person despite the obstacles of DMD,” says Susan.
Following his diagnosis, Ernie’s condition was managed by UPMC physicians across specialties, including pulmonology, cardiology, and neurology.
“Around the age of 13, I noticed that Ernie was snoring loudly at night and was overly tired during the day,” says Susan. “I knew something was off, so I scheduled an appointment for him at UPMC.”
In middle school, Ernie began seeing UPMC pulmonologist Patrick Strollo, MD. Ernie participated in a sleep study at UPMC Children’s, leading to his diagnosis of sleep apnea.
“After seeing Dr. Strollo, I started using a BiPAP machine to help me breathe better at night and struggled with it. I would take it off in the middle of the night for the first few months,” says Ernie.
After an adjustment period, Ernie was able to sleep through the night wearing the BiPAP machine and felt better rested and energized during the day.
“Once Ernie started using the BiPAP machine regularly, I noticed he had less headaches and was no longer falling asleep during the day,” says Susan.
Ernie also began using a cough assist machine at age 13. This mechanical device helps patients with muscular weakness to produce a normal cough. The device also helps to prevent pneumonia and improve lung function.
Now at 40 years old, Ernie continues to use the BiPAP machine each night and uses the cough assist device twice a day to maintain clear airways and proper breathing.
“After 25+ years of care, Dr. Strollo has become a big part of my journey,” says Ernie.
Last year, Ernie was hospitalized at UPMC Presbyterian for an abscess. He was admitted to the advanced lung disease service floor to be routinely monitored by Dr. Strollo and his team.
“UPMC Presbyterian provided specialized care for my condition that I couldn’t get anywhere else. My care team made everything accessible. The nurses gave me a soft call button to make it easier for me to contact them. They were very conscientious,” says Ernie.
In addition to pulmonary care, Ernie sees a UPMC cardiologist, Gavin Hickey, MD, to monitor his heart function.
In 2011, Dr. Hickey recommended Ernie get a defibrillator and pacemaker to regulate his heartbeat. Since the implantation of these devices, Ernie has maintained strong cardiac function.
“The comprehensive care at UPMC has been a huge help with Ernie’s condition. If he has an emergency, we know that UPMC has the expertise and experience,” says Susan.
Ernie takes life in stride, approaching each day with a great attitude. He positively impacts others in his community through his strong faith and active involvement at church.
“One day, I was talking to a member of my church who was struggling with sleep apnea. I told him about my experience with sleep apnea and let him know how much using the BiPAP machine has improved my life,” says Ernie. “You just have to stick with it.”
Ernie enjoys spending time with his family and talking Pittsburgh sports with his brother Adam. He follows up with Dr. Strollo twice a year to monitor his pulmonary function.
