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Shavini Fernando - phaware® interview 371

Jun 14, 2022

Shavini Fernando discusses her severe pulmonary hypertension diagnosis due to Eisenmenger's Syndrome. After facing multiple cardiac arrests and strokes due to the low oxygen levels in her body, she developed OxiWear, the first ever wearable for continuous blood oxygen monitoring device that alerts patients who are prone to hypoxia to live life independent without having to worry about their oxygen levels. Use Coupon Code "PHA2022" to receive 20% off if you purchase a OxiWear device by 6/30/22.

Shavini Fernando:
I'm Shavini Fernando. I'm originally from Sri Lanka, but now living in Arlington, Virginia. I got diagnosed in 2015. I had a hole in the heart from birth, but I never got diagnosed. When I was about two and a half, my pediatrician has told my mom that he can hear murmur. Because of that, doctors said, "Oh, there's nothing to worry about." My mom was like, "They should have at least told me keep following up." When a cardiologist says, "There's nothing to worry about. Don't take it hard with your baby." You don't worry. You think everything's fine.

I literally had breathing issues since I was small, but I was diagnosed as asthma. Every other week, I used to nebulize, because I always ended up unable to breathe in the night. But I was athlete. I was a swimmer. So I kept doing everything I liked with the inhaler. I have literally tried all the inhalers in the market, I think, because they just kept changing the inhaler as things were worsening. Doctors never wanted to do a second diagnosis. They were just following up on the previous person's diagnosis.

In 2005, I finished school, and then I went to study abroad. Because the temperature with the winter, it was all different, I started having more breathing issues. Then you think, "Oh, you were an athlete. You couldn't work out. So your cardio function has got weaker." I got a membership to the pool and started swimming again. Even when I went to the doctor there, they gave me another inhaler. Once I coughed out blood, when I was there. Then they thought it was pneumonia, so they put me on antibiotics. After that, the cough was gone. No one was checking again.

Things were going on like this. It was getting worse and worse. Then I started getting palpitations. When I got palpitations, literally they said I ate a lot of junk food and this is acid reflux. I literally had multiple episodes where I would get arrhythmias. They must have been like tachycardias. I thought those were asthma attacks. When you can't reach the inhaler up, you do everything so that you can breathe again.

After that, I started going blue. So when I started going blue, I went to a cardiologist and said, "Look, there has to be something wrong with my heart. That's why I'm going blue," because you normally go blue when your heart can't pump enough oxygen to your body. My family doctor referred me to a cardiologist and he was like, "How come no one heard a third beat until now? I can literally hear a third beat. Let's go and take an echo." Then he was like, "You need to get some serious invasive tests done because this is really bad, according to the echo."

He sent me to another hospital. He said the hospital that he's in, doesn't have the required equipment. So he referred to another hospital. Then they did a right heart catheterization. When they performed the right heart catheterization, actually I went into cardiac arrest. They had to revive me. My body has come up with its own system so it goes a bit haywire when you try to disturb it. After doing that, they said you have severe pulmonary hypertension. [My pressures were] 128 at that time. The doctor who performed my catheterization said, "There're no treatments available here in Sri Lanka, so you literally have about good two years with this pressure. Just enjoy life and we’ll give you some medicine."

I got on a flight two weeks after. My sister was living in DC. I made an appointment at Johns Hopkins. They said, "You come here, let's get a second opinion." We spoke to one of my brother-in-law's friends in Canada. He's a cardiologist. He said because you had an episode, make sure you fly with oxygen. So I came here for a second opinion. Then they said what you have is Eisenmenger’s Syndrome. The definite therapy is both lungs and heart transplant. They said, let's see, we'll put you on medicine and see because at that time they said, you will need at least in about two years with my condition, because my PH was bad. It was shunting completely, because it got disturbed during the procedure. Even when I brushed my teeth, I was turning blue because it was shunting. I couldn't do anything.

They literally put me on continuous oxygen and they said you can't go back home. I came on a three month notice from work. I had to call home to my workplace and tell them I can't come back and give my resignation over email. I stayed with my sister and they put me on continuous oxygen and they prescribed Sildenafil and Opsumit. They said, "Let's see, how do you do with this." Also, because I flew, the person who was doing my bubble test didn't know I was shunting. She wanted to do a bubble test. The bubbles ended up in my brain. I had an embolism. I went into a stroke. So I was in the ICU for three weeks.

After that, I was living with my sister. My mom has to stay with me for six months. She was from Sri Lanka, because I couldn't do anything. She had to wash my hair. She had to help me bathe. I couldn't even bend and lift anything. I was just turning blue. But, after six months, I realized, "Okay, now I'm starting to feel a bit better" because my policy was I was athlete before and I had breathing issues and I did all that. It just now it has a name. So why would I let that name define everything? Let's get back on track with it. I started like taking small steps and training myself. With my oxygen, I started walking.

First, I started [walking around] the apartment. Then after that, I started going outside. I went shopping and halfway, my battery was dying in the oxygen concentrator, because it was on high flow continuous. I went into a Pottery Barn and I was like, "I need to charge my engine. Can I borrow one of your plugs?" They were like, "Not just a plug, borrow a bed. You can sleep there and wait till your oxygen charges."

I started getting back to doing stuff. Then when I went for the three month walking test, I was first walking only 500 feet. At my three months, I was walking 998 feet. The doctor was like, "We have no idea what you were doing, but keep with it." When I went for the six month test, I literally walked 1,500 feet. Now I walk 1,998 feet. I kept doing all that.

The other thing was, I was here with visitor's visa. I had to start figuring out my visa now. I had no option, so I ended up studying at Georgetown. I already had two Master's, so I did a third Master's. Georgetown is literally the most hilliest campus. That's why it's called the University on the hills. It's all hills. But I was fine. I was walking around. I used to carry two extra batteries in my backpack. Initially, I was going completely with the oxygen but then I was able to change that again as I needed. I was able to last the whole day, with just one battery. Because the batteries are heavy, I didn't want to carry any extra weight.

While I was in school one day, I had a similar episode, like before I got diagnosed. I ended up getting a SVT, a Supraventricular tachycardia. My heart rate went really high and then I knew my heart just stopped. It's like a sixth sense. I knew, because I had had done it before. I knew what to do. My friends were like, "You're just blue, blue, entirely blue." I was like, "Okay, don't panic. Don't make me panic. Just call 9-1-1." I just wear oxygen, crank it up to four liters. I keep getting oxygen, so my body didn’t run out of oxygen.

Every time, it's the same. I get strokes. I got hypoxic strokes. I get cardiac arrests. But by the time 9-1-1 comes, I'm all normal. They're like, "Who's the patient?" I'm like, "Me." About three months before this happened, I actually started living on my own. I moved to a new apartment. My parents arranged an apartment for me so that I can stay close to the university. Then when this whole thing happened, the doctors at Johns Hopkins's were like, "You should think twice about living alone. Maybe you should move back with your sister, because you need someone by your side when things like this happen. Also, you should revisit your decision of starting at Georgetown because it's too hilly. You should go find another university that's more on the flat land." I'm like, "I don't see any reason why I should live with my sister." Because when this whole thing happened, I was between about 25 people. They all panicked. No one was able to do anything. I had to do everything on my own. So I was like, "I don't see any difference with this."

After that, I went and bought all these wrist wearables. Then they said, "Your heart rate is not your issue. It's your oxygen levels." I said, "I have a finger cuff." They said, "The thing is, you don't feel your oxygen dropping, so the finger cuff doesn't help you. The finger cuff only gives you warnings if you check it. Unless you physically feel something, you don't check it." I said, "What if there's something that measures continuously?" Then he laughed at me and said. “With all your qualifications, if anyone can do it's you. If you want to do something, do it. But jokes apart in three months, we will revisit this decision and you tell me exactly what your plans are.”

I went back to school and I said, "I have this crazy idea. I need to develop this device that will continuously monitor my oxygen so that I can tell my doctor, I can live on my own." That's how I started OxiWear, just to prove that I can live alone. Then when I took it to him for my three month visit and said, "Oh, I made it." He was like, "You should seriously think about making this, because there's so many people who can use this."

We started working on it in 2019. We did five different designs. We kept testing, testing, testing, and again, changing the design. Now, finally, we finished the whole thing. It keeps continuously monitoring. So on your phone app, you can see your numbers going in. You can set your own threshold, so we allow users to change between 92 to 97. When it comes to that, it starts vibrating on your ear. At the same time, it sends out a text alert on the application. You can put three numbers who you think will run to you first, who's the closest to you. Because you don't have enough time when your oxygen drops. It has to be your neighbor who lives in front or someone who can come fastest to you to help you. It sends a text alert to them with your location and your numbers so they know, should I first run to them or should I call 9-1-1 then run to them based on the numbers.

We are working on getting FDA approval, so we can get it insurance covered for everyone. But, at the same time, it's a blessing in disguise. A lot of sports communities are interested. Because of that, now we can go out as a normal fitness wearable, so that anyone can just purchase it out of pocket until we get the FDA approval as a medical device. Off the shelf, any of the wearables are not FDA regulated. They said as long as we don't market it as a medical device and we are just focusing on the fitness area, people can use it. The only difference we do now here is it's the same thing, but we don't allow users to put numbers below 92, so it's between the safe range. Users can set their own customer alert. We don't send data to their doctors from this app, but if they want, they can download the report and email their doctor on their own.

This version, we are going out like a Fitbit, like a normal wearable. People can just purchase it out of pocket. We got a lot of interest from patients. We even have about 50 who have signed up for beta testing. Because I did this initially for the PH community, we decided to give patients a 20% discount for the PH Global Summit. so they can place their pre-orders with the coupon “PHA2022” to receive a 20% discount till the end of this month. They will have the upper hand and they have a better discount to place their order and get it at the cheaper price than the rest of them.

I'm Shavini Fernando. I have two rare diseases, Eisenmenger’s and pulmonary arterial hypertension, so I'm very rare and I'm aware.

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