I was misdiagnosed for 33 years. I was told I had asthma.
In September 2015 in Sri Lanka, I was trekking and I became short of breath and my friend said that my face was a blueish color. I was concerned so I went to the doctor to find out why. I will never forget that day, the doctor diagnosed me with a hole in my heart and severe Pulmonary Hypertension (PH), and told me that I had two years to live.
I moved to the US to get a second opinion from the world leading PH department at John Hopkins. The conclusion was that I needed both a heart and lung transplant. The average life expectancy after a lung and heart transplant is 5 years, because they need to weaken the immune system to do the procedure. The health risks are even higher for me because I have the Tuberculosis vaccine in my body. As a result, the doctors are trying to buy as much time as possible before I undergo a transplant. Fortunately, I am beating their expectations in the state of my health, and it’s already been over 3 years, when my life expectancy was 2. I am currently shooting for the stars and hoping 3D printed lungs can be available before I have get a transplant so I don’t have to weaken my immune system.
Upon arriving to the US, the doctors also told me that I would never be able to fly ever again and that meant I could not go home to Sri Lanka.
Despite this, I did not want my condition to define my life. I wanted to live it to the fullest, so I enrolled in a Masters of Communication, Culture and Technology at Georgetown University. I wanted to restart my life, study, and live like a everyday person. Importantly, I also wanted to create awareness of this silent disease I had.
I had one major challenge to living a normal life. Due to severe PH, my oxygen levels drop down to dangerous levels without me noticing.
One day while working at Georgetown in mid 2017, my colleague suddenly started screaming that my face was blue!
My oxygen levels had dropped without me noticing.
In a matter of minutes, my heart stopped…
Before my brain ran out of oxygen I was able to repeatedly hit my chest with my fist (performing self-CPR) which fortunately restarted my heartbeat. Because of that, I am here today.
This has actually happened to me on four separate occasions. I have had to revive my own heart on my own before I passed out from no oxygen supply to the brain.
After the incident at Georgetown in 2017, my doctors, family and community were questioning whether it was safe for me to live alone, work, and study at university. This was heartbreaking for me. I had just started my new life in the US, was finally living on my own, and I did not want to lose my independence.
I thought to myself constantly — if there was a way to know my oxygen levels at all times — I could know when they were falling, and when I needed to take action. Before it was too late.
I needed a wearable that could monitor my oxygen levels, alert me if they fall too low and allow me to get help on time.
Being a maker, software engineer and general tech person, I knew about all of the devices in the market. Unfortunately, there was nothing available that could help me. They either didn’t check my oxygen like Fitbit, or if they did measure oxygen, but were not wearable like my finger cuff (pulse-oximeter).
I knew I needed 3 essential functions:
1. Measure my oxygen levels.
2. Be wearable — so that it could be constantly monitoring and alert me if my oxygen fell too low.
3. Activate my emergency plan (and call 911) if something ever went wrong.
This is why I needed to create Oxiwear — a wearable on my ear that can could monitor my oxygen levels and allow me to get help on time.
I proposed the device to the PH specialists at John Hopkins, and they encouraged me to make it. They knew just how valuable something like that could be not just to me, but the entire PH community. And today, they are helping me to develop this device.
Currently, I am on the mission to do this. Not just for my own life, but for others in the PH community.
Since, starting OxiWear I have created a working prototype of the device. I have also now won pitch competitions and received grants which are helping me to fund the initial development costs of a more optimized version of the device. I am aiming to make the device smaller, and stylish. I don’t want it to look like a medical device, but like something I would want to wear. My goal is to make this available to use as soon as I can, so I can reduce my (and the PH community) insecurity through continuous oxygen monitoring.
I hope that you can join and follow my mission. Feel free to sign up for updates in my newsletter at OxiWear.com/news.