You can't leave your heart at home, but I possibly could.
My pump is like a part of my body. It helps me live.
So, it's with me everywhere I go. It's kind of like my friend.
I guess I should give it a name, or something.
I have a disease called pulmonary arterial hypertension,
and I have a pump that pumps an experimental drug
called Remodulin into my body,
and that is what is necessary for me to stay alive.
There is not a cure, they can only make us feel better.
They can never cure us,
and some people even become immune to the drug as time goes on.
So, this drug doesn't work forever, and it doesn't work for everyone.
I'm trying to push out all the air bubbles,
so that they don't get into the cassette.
So, I'm just connecting my tubing right now.
So, basically I'm just switching pumps to my new medication
and then I turn this pump on so that it's running.
So, this is just trying to get the fluid to fill up the tube
so that there's no air in it.
There's something particular about Lauren,
although she's shy and quiet,
she will say how she feels about things but you have to pay attention
because she will only say it once.
And if you don't hear her the first time,
you consider that opportunity gone.
I try to listen to her very carefully now,
because what she has to say has a profound impact on me
and everybody around her.
There we go - this pump is on, so this is good to go, too.
And then I just have to clean everything up, basically.
This is a picture of Lauren's heart CAP that she had,
which says what her pressures are.
This is also a picture of Lauren's central line,
where it goes into her chest and straight into her heart.
Right here.
This is Lauren when she was just a little baby.
She was always running around with her pearls on.
SHE LAUGHS Huh, Lauren?
Pearls and a diaper.
That was Lauren.
When I was little, I really didn't know there was much wrong
with my dad because he was very resilient,
he never seemed sick to anyone.
Joe was diagnosed with pulmonary hypertension when he was 18.
He never really let it get in the way of what he did.
He found a way to adapt.
"Could this be genetic?"
And they said, "No, it's idiopathic."
It happens, just...
It was his luck.
So, no, it never even crossed my mind
until I started having symptoms and wondering what it was.
Luckily, I had a great doctor that said, "Let's go check it out,"
and decided that she in fact needed a right-sided heart catheterization,
and she was diagnosed.
I was told that life expectancy - I was actually shocked by this,
cos I guess it's hard to hear - was one to five years.
Without treatment, I was told one to two,
but she does have treatment.
But I do think that that's a very individual thing for each patient.
However, Lauren has been sick a really long time.
She's been sick since she was a little girl,
even though we didn't have her diagnosed.
I think that has played quite a big toll on her body,
not being oxygenated the way that it needed to.
So, I mean, I don't know what that's going to do for Lauren's
life expectancy.
I would hope to think that within her lifetime,
that we're going to find a cure.
SHE SOBS
And that... It won't be like that.
And then, typically you have to...
..put the tube in a circle - it's kind of like a stress loop,
so that if it gets pulled on, it doesn't just kind of, like, rip.
I keep it in my purse all day long,
sometimes I take it off when I go to sleep, it depends how annoyed I am.
But, yeah, I usually roll up the tubing in my purse
and just keep it there.
People really don't notice if it's in my purse, so.
I guess I'm not scared because I feel like there's going to be
a time when I'm going to need to be scared and now is not that time.
Like, I feel like I'm going to know way beforehand,
before anything happens -
of course, that's naive and we never know what's going to happen to us -
but I feel like now is not the time to be scared, for some reason.
I can't control what happens to me, only how I respond to it,
and so that's the best thing that I can do for myself is be positive.
I'm going to nursing school and I'm interested in becoming
a Remodulin nurse for other patients.
One thing that happened was, I was asleep and I woke up
and it untwisted itself,
and like, I hit a part of my tube and it just dropped off.
And so I knew it had become detached.
I flicked on the light, looked in the mirror,
saw that there was blood all over my shirt.
From there, I got on FaceTime with my doctors, they told me what to do.
That's actually happened to me twice.
There is fear that if this happens again, that it could be worse.
Fatal.
Which is why I wanted my dog.
I decided to get my service dog because I'm going to a dorm,
I'm going to be alone with all my medical equipment, and so
I thought, as a safety precaution, I wanted a dog to wake me up,
so that's why I got Ruby,
it's because of that whole bleeding situation.
There's usually, like, a long waiting list,
it's usually like three to five years, and then it costs you
like $35,000. I have a trainer that trains me to train my dog.
So, that was the quickest way for me to get a service dog.
There is a cure out there, I believe that she can work through it
and stand for that.
So, I think that she has that warrior spirit inside of her,
just like her father did.
I believe that she will be at the forefront of research,
clinical trials and therapies.
I think she works really, really hard on accepting things.
I mean, it's not perfect, you know,
we all have our really bad days and our really down days about it.
But I think on a whole, it's a strange thing to say,
but I think she's embraced it.
A lot of people push things into the future, like,
"Oh, I'll get to it eventually, I'll learn to do this eventually."
But for me, it's like, if I want to learn to do something,
now is the time to do it, and I do it now.
I think that's a great thing because even if I live a long time,
then I would have done all these amazing things, right?
Because I didn't do it without inhibitions.
And I think everyone should live that way,
not just people who may have a shorter lifespan.
Because then we'd have awesome lives,
not being afraid of what people think of us would be great.
SHE LAUGHS