Creative Expressions: Creative Writing
Alfie (pictured right) sits hiding by the window. She wishes that she
could be out there, with her oxygen in her nose, without being
ridiculed by the others. She is already different enough; she’s a
dog, while most of the people out there are humans. She had reason
to be teased before, but now that she’s more different, she feels
isolated. There is nobody like her.
A girl comes into the room, about 9 or 10 years old. She sees
Alfie with the oxygen in her nose, and Alfie sees the expression on
her face turn into an expression of confusion, and also bewilderment.
If her expression could speak words, Alfie was sure it would say,
“Wow, you’re a freak.” Despite the hurt that she feels, Alfie just
looks up at the girl and smiles. The girl needs to read from the dog’s
expression, “Yeah, even though I look like a freak, I don’t care,”
though Alfie does care very much.
This story sums up how I feel, especially when I have my oxygen in my nose around other people.
(Alfie is my character who also has PH.) I also feel left out because I can’t participate in most of the
activities that others can. I feel as if most people would think I was a freak. I don’t share my emotions
easily so nobody knows how I feel.
I was diagnosed with PH on January 22, 2010. At the time I didn’t see how serious it was. I just
sat there, curled up in a bit of a ball, and thought, “Ok, I’ll get through it.” Although I know now it’s
more serious than I originally thought, I still will get through it, even if I do have this illness for the
rest of my life.
I’ve been having symptoms of my PH, or at least my heart defect, for most of my life. My mom
remembers me running down the hall and back, and I would be winded, just from doing that. Everyone
would say it was asthma or that I wasn’t getting enough exercise, and we believed this for 15 years.
Then, one day in December 2009, I was with my old friend, and his mom was worried about me
because I had gotten winded, my skin turned pale and my lips and fingernails had turned blue. I was
convinced it was just asthma again, but I was wrong.
On January 21, 2010, my parents took me to the pediatrician for a checkup. My mom brought
up the blue fingernails, and the doctor checked my oxygen saturation levels. He saw it was 79, and
he thought that his machine was broken. He got a new machine and took it again. It was the same
result. He then got some oxygen and I put it in my nose for a few minutes. He took it again, and there
was no change. He then told me to go to a cardiologist as soon as possible.
I got a cardiology appointment the next day. They did an EKG and an
echocardiogram. The cardiologist then came in and gave me my diagnoses: ventricular
septal defect, which had led to pulmonary hypertension.
We were all so shocked.
I got scheduled for a right heart catheterization for February 2, 2010. After I got
out of the hospital, they put me on oxygen therapy and sildenafil (RevatioTM). A month
later, I was put on bosentan (TracleerTM). I’ve been helped a lot by these. In August, I
went to see a PH specialist. He switched me to ambrisentan (LetarisTM), which I started
taking in October, and he also put me on treprostinil (TyvasoTM), which I started taking in
It seems my life has changed significantly since my diagnosis. Like Alfie, I have to
get used to others staring at me with my oxygen in my nose or at me in a wheelchair. I had
to get used to the medicine schedules. I have to live everyday with the fact that I’m not like
everyone else and that I have a rare disease. Everybody worries about me more now because
they know that something serious could happen any moment. I don’t really like these changes,
but I’ll have to live with them. I’ll get used to whatever I haven’t gotten used to yet. I’ll accept it.
My message to all is that even though you’re sick, that doesn’t mean you can’t do
anything. It doesn’t mean that you have to isolate yourself. It doesn’t mean that you are a
freak. It doesn’t mean you have to give up. When I feel alone, I think of those others who have
chronic illnesses, and I feel better knowing that they know how I feel and that gives me hope.
Never give up hope.