Dec 5, 2016
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 Caring Voice Coalition. These brothers also share how important it is to engage for a cure.
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 4 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 2 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 2 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.
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