Our Story: Living with and Managing Sickle Cell Disease (Nicholas H.)


Uploaded by NHLBI on 02.09.2011

Transcript:
This video is a presentation of the National Heart, Lung, and Blood Institute.
Our Story: Living with Sickle Cell Disease Bridget H.: What game am I winning at?
Nicholas H.: Operation. Bridget: When I tell someone my son has sickle
cell, the first thing they say is -- what nationality, what are you? I believe some
people think that sickle cell is only an African American disease. I would like people to be
aware that sickle cell is a blood disorder that can happen to all different races.
Jay: Two thousand! Bridget: When Nicholas was diagnosed with
sickle cell at birth, I didn't believe them. Nicholas' father has sickle cell trait and
I have Thalassemia minor. No one ever explained to be careful if I have children.
Nicholas: As a kid growing up, you don't really know what's going on. Oh, I guess I have sickle
cell. Bridget: In the early years, Nicholas' hands
and feet used to swell-- hand and foot syndrome-- He was an infant. We would take him to the
ER. At age five he had his gallbladder removed
and his spleen removed. He's had blood transfusions and a blood exchange.
With sickle cell -- in order to go to the ER -- it has to be a pain crisis or a fever.
And that would happen often. Back in the day when Nicholas was -- from
birth till around 6 -- they knew him by his first name -- the employees at the hospital--
because we were there all the time. Nicholas: The pain -- it feels like somebody
squeezing you, thumping-- ba-boom, ba-boom. Bridget: Sometimes it's so severe that the
medications don't help. And he is yelling at me, "Right now! Take me right now." And
we'll go to the hospital. Nicholas: It's like a lifestyle. So you kind
of get used to it. I'll go in, they'll ask what's wrong and then I'll get admitted and
that's it, I'll stay for however long I need to until it goes away.
Bridget: Since Nicholas has started taking hydroxyurea, he's been able to be more active.
Nicholas: Hydroxyurea changed my life. I can stay home for months at a time now. I'd be
in the hospital all the time when I was a kid. So now I'm being able to stay at home
and have like a regular schedule with sports and you know school and friends.
Bridget: Pretty much everything is under control because of hydroxyurea and penicillin.
Doctor: How are you guys doing? Nicholas: I think it's very important to have
a good relationship with your doctor 'cause if it's just like a hi-bye type of thing you'll
only be getting medicine you know and that's it. But if it's a good relationship I think
you'll understand more about it. You know and they'll be there for you instead of just
like a straight business relationship. Doctor: Every year until you are an adult
we'll want to review your TCD, which is a transcranial doppler study.
Bridget: The hospital that we go to in Chicago has its own sickle cell unit. The doctors
at the hospital taught me everything I know about sickle cell. They explained everything
very well. When Nicholas was younger, only the hematologists
understood the disease. The pediatricians didn't.
But now that Nicholas is older, we found a pediatrician near our home who knows what
to do, what kind of sickle cell questions to ask. What kind of advice to give us. And
it's very important to have a hematologist and a pediatrician working together.
It's like tag team. We've got double support. In 2010 Nicholas participated in a study um
regarding lung function. Nicholas: Participating in the studies -- I
think it helps them, helps the doctors figure out more about the disease and you know come
out with more medicine and just help everybody who has it.
Bridget: I feel people should participate in the study if they feel the same way we
do. We want them to know as much as they can about sickle cell.
I wish they would come up with an instant cure, of course. You know I wish there was
something that could be given and it would be gone. But you know he's strong. He deals
with it. Nicholas: I have to pull through it you know.
It's something that's there. You really can't do anything about it. So you just gotta get
through it. Stay tough. Bridget: I wish he didn't have it.
Nicholas: I think about that all the time. If I didn't have sickle cell. Like if I'm
in the hospital bed in the middle of a crisis, I'll think about it and be like I wouldn't
be here right now. Everything would be fine. Bridget: He's respectful and he's fun and
he's very popular amongst his friends. And he's a good brother and a good son.
Nicholas: Managing my sickle cell without my family would've been hard 'cause they're
always there for me. So I can't really imagine what it would be like you know without having
their support. They mean a lot. I love 'em. Bridget: I just want him to be successful
and live a normal life. I want him to get married and have children. I hope sickle cell
doesn't hinder him from having a normal life like everybody else.
Nicholas: I don't think sickle cell will stop me because it hasn't yet. I won't let it.