By Shavini Fernando
For as long as I can I remember, I was always wheezing. I loved playing sports, but I couldn’t run beyond 100 meters. Swimming beyond three lengths of the pool caused me to gasp for breath.
In 2006, after completing my undergraduate degree, my real problems started. Shortness of breath made it hard to climb stairs and walk uphill. I couldn’t swim even two lengths anymore. My life became more limited.
An x-ray and MRI showed scarring of lungs, and I was diagnosed with pneumonia. But I believe it was the starting point of my pulmonary arterial hypertension (PAH).
I was back in Sri Lanka in 2009 when my breathing got worse. In 2010, due to an elevator malfunction, I had to run to the third floor where I was teaching. As I started class, I suddenly couldn’t breathe, everything went blurry, and I couldn’t feel my pulse.
My students started to scream, “Ma’am are you alright? You are going blue.” I gulped a bottle of water but still couldn’t breathe so I started to hit my chest until I could catch my breath.
At the emergency room, I explained what happened. The doctors attributed the episode to palpitations from gastritis and prescribed antacids.
Similar episodes didn’t stop me from living my life. I finished my MBA, traveled to multiple countries and did everything I loved.
In 2015, while I was trekking with a friend, I had another episode. My friend, an experienced pilot, recognized my low oxygen and said I should visit a cardiologist.
I consulted a cardiologist, who identified an atrial septal defect and was surprised that it hadn’t been diagnosed, During a right heart catheterization, I had a cardiac arrest and had to be revived.
When I woke up in the ICU, I was told that I had severe PAH due to Eisenmenger’s syndrome, a blood circulation abnormality caused by my heart defect. No treatments were available, and the doctor said I had two years to live and enjoy my life. But I wasn’t ready to accept that prognosis.
I flew to the United States for a second opinion from John Hopkins University Medical Center in Baltimore. I ended up in the ICU for four weeks because of a stroke, and I was diagnosed with severe PH, a hardly working left heart and a severely enlarged right heart.
The doctors said that I might need a transplant but they would decide after checking my progress on vasodilators and 24/7 continuous oxygen.
Within three months, I started to feel a difference. I changed from continuous oxygen to a pulse concentrator and started more physical activities to increase my lung capacity.
During a six-minute walk test in the ICU, I could walk only 500 feet. But three months later, I could walk 1,300 feet. My results kept improving. Six years later, I go rock climbing with my friends without oxygen, and I probably won’t need a transplant for five to 10 years.
With everything improving, I moved to a studio apartment in 2017 and started my master’s degree at Georgetown. To help create awareness for PAH, I made a documentary for the Pulmonary Hypertension Association (PHA) and participated in pulmonary hypertension (PH) fundraisers and events.
But during my summer internship, history repeated. I couldn’t breathe, and my heart stopped. The incident raised the question of whether I could safely live alone and study at Georgetown, which has hills and many steps. I didn’t want to go back to zero. I had just started my life again.
Becoming an entrepreneur
I started to think about ways to live independently and came up with an idea for a wearable device. I discussed my OxiWear idea with my physician at Johns Hopkins University Hospital. After realizing the number of people I could help, I developed the device as an independent study.
OxiWear, worn over the ear, continuously monitors my oxygen saturation and warns me when my oxygen levels fall below the safe threshold. It also sends alerts with my location to my emergency contacts to ensure I receive immediate help.
The device began to receive attention, earning technology and entrepreneurship awards and grants. The awards allowed me to form a company, patent the device and attract more investors.
My company is conducting tests to ensure accurate readings for people with dark skin or who have skin conditions. Skin pigmentation is among the factors that can affect the accuracy of pulse oximeter readings.
We plan to release OxiWear as a fitness device while we work toward FDA approval as a medical device.
As a PAH patient who’s had multiple life-threatening events, I believe OxiWear can warn patients of dangerously low oxygen levels before they end up in an emergency room. Ultimately, I think it also can reduce medical bills and prevent deaths from silent hypoxia.
Software developer Shavini Fernando invented a wearable device to continuously monitor oxygen saturation to help herself and other people with PH. Her story originally appeared the June 2021 issue of Pathlight, PHA’s quarterly member magazine. Join PHA to receive Pathlight, discounted conference registration and more.