Some of you may already know me but most of you may not. I’m Shavini Fernando, the founder of OxiWear, an ear wearable device for continuous pulse ox monitoring and emergency alerting. But more than all that, I’m one out of those many millions of pulmonary hypertension patients.
As an entrepreneur, to date the biggest problem that I had was explaining to people what is pulmonary hypertension, that there are almost 50 million people in USA — and many millions around the world — who have this condition, and why continuous oxygen monitoring is important to them. People with lung diseases like pulmonary hypertension are prone for hypoxia.
I started developing a device based on my own life experience after facing 4 cardiac arrests and three strokes due to hypoxia and yet I still can’t convince people that this problem is huge. Why? Because it is a silent disease. Although I carry a portable oxygen concentrator with me everywhere due to the numerous episodes, not everyone wears oxygen. You might meet your uber driver suddenly showing you the oxygen concentrator they have under their car seat for an emergency which they don’t use all the time. But they likely won’t show it to you or anyone else unless you are someone like me who’s walking around with a visible oxygen concentrator.
But these days all I hear about is how COVID-19 patients end up with right heart failure due to a dangerous and potentially fatal condition known as acute respiratory distress syndrome (ARDS). Which is similar to what happens to the pulmonary hypertension patients. People with pulmonary hypertension die due to right heart failure.
So as a patient who is living with this let me explain how the lungs and the heart function in layman terms. The heart and the lungs always work side by side. The right heart receives all the deoxygenated blood from our body and sends it to the lungs where the lungs oxygenate them and send it to the left heart which then pumps it back to the body.
So, in our heart the left heart does most of the pumping thus it is made with more muscle to support the function. The right heart is not built for pumping blood into the lungs against much resistance, usually it is easy and the right heart is not particularly muscular because of this.
In a healthy lung we have air sacs — the ones that help oxygen pass through into our red blood cells. Oxygen within these air sacs (alveolus) travels into small blood vessels (capillaries) and into our red blood cells. To allow this, the walls of alveoli have to be very, very thin.
So, for any reason if these walls get thicker and there is damage to the vessels due to lung disease, this makes it harder for oxygen to get into the blood and increases the resistance to blood flow and increases the workload on the right heart, which is something it is not built to handle. So it starts to fail.
For patients with pulmonary hypertension what happens is they get pulmonary hypertension from either Idiopathically (IPAH) or as secondary disease due 30+ different other diseases such as COPD, Cystic fibrosis, Pulmonary Fibrosis, Sickle cell, scleroderma, HIV, Mitral valve disease, congenital heart defects etc. that causes their lung walls to thicken due to many reasons. The damage slows the blood flow through the lungs, and blood pressure in the lung arteries rises. As the right heart must then work harder to pump blood through the lungs, this extra effort eventually causes the heart muscle to become weak and fail.
The coronavirus also does something similar. The coronavirus damages both the wall and lining cells of the alveolus as well as the capillaries. The damage leads to thick and dysfunctional alveolar walls and damaged or destroyed capillaries. This leads to reduced oxygen delivery and increased workload on the right heart.
As someone who has faced 4 cardiac arrests and 3 hypoxic stokes, believe me when I say: It is not fun. Getting hypoxic and facing cardiac arrests is the worst feeling ever. If you want to know how it feels when you are starting to get pulmonary embolisms and how shortness of breath feels like, try breathing through a straw. That’s exactly how it feels when your heart can’t pump enough oxygen to the body. If you want to know how getting a cardiac arrest feels like, it’s like when someone chokes you or when you are drowning. YOU JUST CAN’T BREATHE. And it is no fun.
For the last 21 days I have locked myself in my apartment and get everything delivered. I wear gloves and a mask just to go out of my apartment to put the trash to the shoot. And when I come in, I put my clothes in the wash and clean all my exposed skin with soap. My kitchen sink is having a leak these days even for that I have kept a cup to collect water and keeps draining it but have not allowed anyone inside my apartment. You may think I’ve gone nuts. No, it’s because I know how serious this is and because I have been through this multiple times. I survived all that because I was able to crank up my oxygen in time and revive the heart before it’s too late. And because I have an enlarged right heart that has adjusted overtime to support my lung function. I do not want to end up in another ICU for multiple weeks.
If you have been through what all of us have, you would not take a step out of that apartment. If you are lucky enough to recover yes some of the damage is transient — but it is a BIG if. And you don’t know to what level your lungs are damaged even if you survive. Because unlike other organs, once the lungs have adjusted it is permanent, there’s no going back. If anyone wants to know what COVID-19 is from a PH patient’s eyes, it’s a fast track ticket to decompensation. But unlike for us who have got it overtime, getting it fast means your lungs cannot adjust, your heart can’t take that stress, and you end up in respiratory and right heart failure.
So by going out, not taking this seriously, and hanging out in crowds, you are risking your life and the lives of your loved ones at home who might end up getting the virus that you transported home from that crowd.
So as someone with a pulmonary disease, I want to share my wisdom:
- Stay at home as much as possible to save yourself and to save your loved ones who can be at high risk.
- How you know your lungs are adjusting is when your body oxygen levels start to fall abnormally. So, keep monitoring your SPO2 levels using a pulse oximeter. A finger cuff or a mobile application allows you to do that.
- If your oxygen level falls below 93% you need to call your doctor for advice or go to the nearest ER.
- If you are getting coughing symptoms and want to take cough syrups avoid taking cough syrups that contain pseudoephedrine and phenylephrine which could make things worse.
On a final note, I hope that we can all get through this as quickly and safely as we can. I hope after this whole pandemic is solved, investors and people would believe me when I say “pulmonary hypertension is a huge problem, there’s almost 50 million people in USA and many millions around the world with PH and continuous oxygen monitoring and getting help in time can save these people who die from hypoxia” without having to justify why not everyone wears a oxygen concentrator like me.
Please take this seriously. Stay at home and stay sane!
Grab your OxiWear device now on : igg.oxiwear.fitness