I'm Aware That I'm Rare: Omar and Javier Estevez

Twin brothers, Omar and Javier Estevez describe how they contracted pulmonary hypertension in the aftermath of 9/11. After their diagnosis they found hope and help from The Caring Voice Coalition. These brothers also share how important it is to engage for a cure. 

Transcript:

My name is Javier Estevez and I’m from Staten Island, New York.

Hi. My name is Omar Estevez and I’m from Staten Island, New York City.

Javier:

I’m a retired New York City police officer. I was involved, heavily involved in the World Trade Center rescue, search operations. During that time with all the toxins that were coming down, I was inhaling them, OSHA did not give us the masks for possible about a week, two weeks. I was there about four months after that time, after … I already had systems until 2003 when, after chasing my daughters, they were young, I just fell down, I stopped breathing. I didn’t know what it was. I went to get tested. Several doctors, they said it was the flu. It was a virus. It was different things, and then after seeing one particular pulmonologist from the police department, he said that I had a something different, he didn’t now what it was basically. I had to go to a specialist. That specialist told me that I had pulmonary hypertension. First, I was diagnosed with sarcoidosis, 2003. 2011, I got a diagnosed with pulmonary hypertension. In that process I was told I would need a pair of brand new lungs because they’re failing right now.

Omar:

Similar story except I worked for the United States Federal Courthouse where Bernie Madoff, the guy with the mortgage bonds that’s where I worked at. At the time, all I used to see is white dust coming during the 9/11 attacks. As I was actually going home one day, I noticed that I was having a hard time breathing. I also didn’t have the masks and then when I seen the fire department, I asked them “Hey, why you guys have these gas masks?” They said “All the toxins in the air.” So they wind up telling me to use a napkin to breathe.

I started finding out with other people that something was wrong in the air. Eventually, I told my brother, I don’t know why I’m having problems breathing. I went to see a specialist also, but this specialist took a long time for him to actually diagnose it. They all said that it was asthma and all they kept on giving me were these inhalers, powder inhalers and then one day, now my heart begins to hurt. Anyway, long story short, first it’s 2005, Sarcoid. 2014, which was only two years ago, then they say pulmonary hypertension. I did a right heart catheterization and that’s what it wind up to be, pulmonary hypertension.

Javier:

Never saw it coming. Didn’t even understand it one bit and not much of explanation either from the pulmonologist.

Omar:

Bet you would think that being that we live in New York City, possibly the capital of the world we have a great deal of information, and I’m sure that they do have it. At the time, the doctors we went to, to them seemed like … There was no even pamphlets. Nothing. All they kept on saying, asthma, asthma. Flu symptoms. Virus. Turned out to be a whole lot more than what they were saying.

Javier:

2007 was basically when I was feeling the worst. I was off by 4 or 5 years off my 20 year retirement and I told the doctor, I have to keep on going. I have a family. I have two young children and I want to make sure I finish my 20-year career in order to get the best pension possible. He says “I’m sorry. You can’t work ever again.” I push myself, I make sure I finish my 20 years and I did. In 2011 I completely finished and I was done, signed my papers and off I left. Very happy person. I’m still very, very happy and I can’t believe I’m still here.

Omar:

Unfortunately for me, I still continue to struggle. I’m still working. I have a family to feed. A house to pay. It’s been very depressing, if you will. I really don’t talk too much about it because us men, we’re always told to be the breadwinners. We are originally from Honduras. We worked when we were since 7 years old. We came here to the States, we also worked. Like most kids when they go off on school vacation, they say they’re going to the Boys Scouts this and that. My brother and I worked. In the fall, we rake leaves. In the winter, we shovel snow. We save that money and we travel out of the country so the kids could stay in the Boy Scouts, we were to France, Germany, so we enjoy that. Unfortunately, now the doctor tells me, “You know, Omar, not everybody gets to finish the race and you may be one of those people.” Says, “You have to really consider about going on with disability” and it may be this year or possibly next year, I have no other choice.

Javier:

Through the internet and through all these media, the world has become much smaller and you’re able to reach out to those individuals that are going through the same conditions and ailments and illnesses and all those symptoms that you’re going through, they go through it, not on a daily basis but they’re going through it.

Omar:

Men have our own issues and we like to be in control of things. When somebody … You do this all your life. You get dressed. You brush your teeth. When that stops and somebody has to do it for you, it’s very tough on yourself. There’s issues that we don’t like to talk about and that’s basically intimacy and our issues with the medicines that they give us and whatnot. Sometimes, your day could be a very charging one, ten minutes later, it could be you’re on the floor.

Javier:

I became aware of Caring Voice Coalition. Great group of people. They assist people with different type of illnesses. They’ll also assist with financially with the cost of medication which is very important. They reach out to you support wise, have questions for disability, for medical questions, there’s doctor on board. I was involved through them through a friend of mine, I became active with them. Right now I’m active with them. I want to get more people involved with Caring Voice Coalition. Great, great organization that’s willing to help out patients like myself and others. I became involved with them because I wanted to help others the same way that they reached out to me. I want to just pay it forward the same way that they done for me. I want to do the right thing and do pay forward for others.

Omar:

I feel that when you don’t speak up or you’re blind, you’re not going to make an issue out of it. You’re basically just shutting up and you don’t want no one to hear you, but the louder you speak, people will hear you. If our politicians would see people like me crying and shouting at their offices, something is going to happen. If I just stay home and watch TV and just relax and don’t do anything, then the next generation is not going to benefit from me. So okay fine, I’m willing to be the guinea pig, but you know what? That person from behind me is not going to suffer what I went through. It’s like our dads used to say “I came to this country to do something, not for me, but for you, so you could have that opportunity to leap ahead and become something that I wasn’t able to be.”

I’m Javier Estevez and I’m aware that I’m rare.

My name is Omar Estevez and I’m aware that I am rare.

Listen to “I’m Aware That I’m Rare: the phaware™ podcast” at www.phaware.global/podcast. Learn more about pulmonary hypertension at www.phaware.global. #phaware