My Handbag Keeps Me Alive | Living Differently

My Handbag Keeps Me Alive | Living Differently

August 29, 2019 100 By Bertrand Dibbert


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