I have interstitial lung disease — What?

Debbie Lozare in Ang Pinoy Stories

Jan 23, 2020 • 3 min Read

After battling a severe case of pneumonia two years ago, my lungs were left with massive damage. 

A new situation had set in: I had become a sufferer of interstitial lung disease (ILD).  It is a rare form of lung disorder that makes the tiny air sacs in the lungs unable to transport oxygen to the rest of the body.

Until I could not properly process oxygen, I did not realize how vital it is for life.  I knew that compressed air in scuba diving is necessary when one is 60 feet underwater; you need air to survive.  But now, even on land, I would need extra oxygen 24/7 to be able to keep my energy up.

At home, I get medical oxygen from heavy cylindrical tanks.  And when I leave the house, I take along a portable oxygen concentrator with me.   The Philips Respironics SimplyGo Mini is my lifeline, allowing me to run errands, have meetings with clients, and have nights out with loved ones.  It has made me become an elegant person with disability (PWD).

I am connected to the oxygen maker through a nasal cannula that goes into my nostrils.  In medical dramas on TV and in real-life hospital scenes, the nasal cannula is the first sign that someone is getting life-giving oxygen. 

In my case, it has become a curiosity, a conversation piece, and a symbol of both strength and weakness. Strength, because I carry on as normally as I could despite my ILD, and weakness, because surely the walking wounded should not be straying too far from her sickbed the way I am doing.

It’s fun to be out and about with a nasal cannula dangling around my face, come to think of it. The comments of Uber drivers are what make it so.  One day, I ordered an Uber and sent a text message to the driver that he would have to pick me up from the third floor of the office building instead of meeting me at the driveway all the way down to the ground floor. 

His reply, “Honestly, third floor?”

At another time, I had a prolonged discussion why it was important to pick me up at the entrance. I said I was a PWD.  “Ma’am, would I need to carry you to the car? Because I had a passenger that I had to do that for!”  Of course, PWDs are immobilized and it took some more convincing that this PWD can walk, if only for a few steps, to get on the car.

Another Uber driver, in his desire to show uncommon concern, asked, “Ma’am, is that dextrose going up your nose?”

One other Uber driver chided me, “You must have been a heavy smoker for so long,” when I have never had a cigarette in my life.  A few actually prayed audibly for me, and some wished me well as I came down from the car.

In all of this, I would find the humor, answer with gratitude and have the grace to accept their good wishes.  The best so far has been a middle-aged Uber driver, who after opening the car door for me and assisting me out of the vehicle, handed me over to the security staff of my office, with the kindest of words, “Please take care of her.”

Such simple words but meaningful to a person with ILD.