LAUREN SPENCER: 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.
LAUREN SPENCER: 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.
LAUREN SPENCER: 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 am trying to push out all the air bubbles so that they don’t get into the cassette.
LAUREN SPENCER: So I am just connecting my tubing right now. So basically I am just switching pumps to my
new medication and then I turn this pump on so that it's running.
LAUREN SPENCER: So this is just trying to get the fluid to fill up the tube so that there is no air in it.
TRACEY SPENCER: There is something particular about Lauren although she is 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 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.
LAUREN SPENCER: This pump is on. So this is good to go too, and then I just have to clean everything up.
TRACEY SPENCER: This is a picture of Lauren’s heart cath that she had, which says what her pressures are,
and this is also like a picture of Lauren’s centerline 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.
Oh Lauren, pearls in a diaper - that was Lauren.
LAUREN SPENCER: 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.
TRACEY SPENCER: 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.
LAUREN SPENCER: 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.
TRACEY SPENCER: 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.
TRACEY SPENCER: I was told that life expectancy, I was actually shocked by this because I guess it’s hard to
hear, was 1-5 years. Without treatment, I was told, 1-2 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 has been sick since
she was a little girl even though we didn’t have her diagnosed and I think that that’s played quite a big toll on
her body not being oxygenated the way that it needs 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 are going to find a cure
and that it won’t be like that.
LAUREN SPENCER: And then typically you have to put the tube in a circle. It’s kind of, like stress loops that if it
gets pulled on, it doesn’t just kind of, like, rip out.
LAUREN SPENCER: 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 pursue. So!
LAUREN SPENCER: I guess I am not scared because I feel like there is going to be a time where I am going to
need to be scared and now is not that time. Like, I feel like I am going to know way beforehand before anything
happens. Of course, that is 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.
LAUREN SPENCER: I am going to nursing school and I am 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; flicked on the light, looked in the
mirror, saw that there was like, blood all over my shirt. And 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 I wanted my dog.
LAUREN SPENCER: Decided to get my service dog because I am going to a dorm, I am 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 is because of that whole bleeding situation. There’s usually like, a long waiting list,
it is usually like 3-5 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.
LAUREN SPENCER: This is $15,000; I use about 4 of these a month. And then I have other oral drugs.
This one is $10,000 a bottle. I am not sure how many I use a month. I think 1 or 2. I am very fortunate to have
California Child Care Services that covers the medical costs right now. However, when I turn 21, that’s kind of
all up in the air. A lot of people get grants for their medications because insurance won’t cover them.
TRACEY SPENCER: It’s so much money because it’s a very rare disease. So the drug companies are not going
to make a whole lot of money on it because they have a very small control group of people that they sell it to.
They can get away with selling it for that much and they do. In order to cure my daughter, you are going to have to
find a cure for the genetic mutation, which takes research and funding.
TRACEY SPENCER: There is a cure out there. I believe that she can walk 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, and 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 has embraced it.
LAUREN SPENCER: A lot of people push things into the future like, ‘Oh, I will get to it eventually like, I will learn to
do this eventually.’ But for me, it’s like if I want to learn to do something like, 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 like, 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 would have awesome lives.
Not being afraid of what people think of us would be great.