In Your Words: Brothers in Arms, Part 2
Twin brothers Javier and Omar Estevez have been living with sarcoidosis for more than a decade. Within the past four years, they’ve also been diagnosed with pulmonary hypertension. They find strength and support in one another, and urge others with chronic illnesses to keep fighting with hope.
Click here to read part 1, Javier’s story.
I worked maybe three or four blocks away from the World Trade Center and several years after the 9/11 attacks I was having a lot of problems with shortness of breath when I was walking home from work. I couldn’t walk without coughing. I went to my family doctor and he sent me to a pulmonologist. About a month later test results confirmed the sarcoidosis.
I work in maintenance at the federal courthouse, primarily doing heating, ventilation, and air conditioning. Every night I would see trucks from the sanitation department cleaning all kinds of residue from the street and I would see all of this white powder come up. One day I asked about it and was told it was debris from the buildings, and it may contain asbestos. They thought that with the facemasks the air was ok to breathe, but it turned out that it wasn’t.
When I went to the pulmonologist they took an x-ray and said that a lot of the sacs inside of my lungs, which are supposed to work like a sponge, have debris and dust all over them; they’re not working to full capacity.
Later on, it started hurting my lungs a great deal, and it even started hurting my heart. The doctor explained that it’s due to a lack of oxygen. A right heart catheterization confirmed the pulmonary hypertension (PH). The doctor told me that this has probably been developing for some time. The PH is all due to the sarcoidosis.
Simple tasks, like climbing a flight of stairs, are daily challenges now. I’m still working, but last year alone I took around 30 sick days. The cold weather in New York hurts my lungs. It’s like squeezing an orange. Sometimes I have no other choice but to stay home from work because when I step outside it feels like the cold air freezes my lungs. I have a lot of problems breathing, even though I have medication.
My wife helps me; she’s been my rock. And of course I take my medication and I pray. I read Scripture to help me get through the day because for me, going through the day, mostly at work more than anything else, is very tough.
I feel that a lot of people don’t understand these illnesses. They see you going about and they think what’s that person walking around with that machine for? But they don’t know how we actually feel inside. People don’t realize how my lungs burn so much in the cold weather, and just to stop outside and hold onto a railing makes it worse.
I would like others with chronic illnesses to know that they’re not alone; that there’s hope. Caring Voice Coalition (CVC), they give you hope. In many ways CVC is the spokesperson for us, they go out there and fight for us. Sometimes when we have a certain problem or condition, you’re afraid to talk about it because you feel like you’re at the point where you feel like nobody’s there to help you. With CVC, I know I’m not the only one with this fight.
My illnesses have taught me that life is short and every day is a challenge, but you have to find a balance, have hope, and have positive friends and family. That will help you greatly. My wife says you have to find something in life that you love doing, like a passion, that will help you get your mind off your illness. I love fishing and traveling, that’s my passion. If I had money I would travel the world.
My twin brother and I are very close. It’s hard to believe we have the same illnesses, but I can relate to him more. We try to help each other and be a support system for each other.
Patients should follow their doctor’s orders and take life one day at a time. The most important thing is to enjoy life.
To cope with my symptoms I often use rest, laughter, and medication. My hope is that down the road, with new technology and more scientific data, and new medicines, all of us with this illness will someday be able to have a longer life.
Caring Voice Coalition
Caring Voice Coalition is dedicated to improving the lives of patients with chronic illnesses. Our organization continues to accomplish its mission by offering outreach services that provide financial, emotional and educational support.
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