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A Life of Lessons
By Rebecca Swartley
This article is written in Memory of Carol Aserinsky and Michelle
Zamudio. May they always
be remembered for their kind hearts and lively spirits!
My battle against Pulmonary Hypertension
began fourteen years ago—October 1989—when I was just
seven years old. My mom had first noticed that something was wrong
with me
when I started to crawl. I would pant and become unusually short-of-breath.
As I began to walk and then run, it became more apparent that something
was not right with me. She kept taking me to the pediatrician and
he kept telling my mom she was paranoid. One of the doctors told
my mom it was asthma and prescribed all kinds of asthma medications.
None of them worked and my symptoms continued. Finally, she got
a pediatrician who listened to her and made me do jumping jacks.
I became short-of-breath and when he listened to my heart he knew
something wasn't right. He sent me to St. Christopher's Hospital
in Philadelphia to see a cardiologist. The Cardiologist put a pulse
ox on me and when it read in the upper 70's, he had a pretty good
idea of what might be causing the problem. After an EKG, echocardiogram,
chest x-rays and a right heart catheterization
it was determined I had Pulmonary Hypertension due to a (VSD) Ventricular
Septal Defect (which is a hole in the wall between the two ventricles
in the heart). The doctors told my parents that since I had already
developed PH, they could not repair my VSD. The VSD was now helping
to keep my PH from progressing. I was only seven years old and
I was diagnosed with an illness that would forever change the course
of my life.
The doctor who made the original diagnosis was not a PH specialist.
He told my parents that he was not the right doctor for me, but
he would help us find the best possible care. For a time, the new
doctor—a PH specialist—would send me out of the room
when she talked with my parents. Therefore I never fully understood
my illness.
All I knew was that my heart and lungs were sick and that I had
to see a doctor every six months for routine testing. In addition,
I had to take a handful of pills every night: Procardia, Digoxin
and Coumadin, and I had to sleep with oxygen.
My parents may not have understood all the details either, but
they had one piece of critical information. I was not expected
to live beyond the age of sixteen.
At some point I informed the doctor that I no longer wanted to
be sent out of the room and requested that she tell me what she
had to say. After that I came to understand the seriousness of
my situation. As I gained more and more knowledge about my illness,
I began to hate it. In middle school I hated my illness so much
because it kept me from doing things I had always wanted to do.
Competitive sports and dance classes were just too much physical
activity for me and I could not participate in them. The school
wanted to put me into an adapted gym classes but I refused. Even
though I knew it would be a struggle to keep up with my classmates,
I was determined to take regular gym class because I did not want
to be treated any differently than the other students. I also fought
to keep my illness a secret. I did not want the other kids knowing
about my illness and treating me differently because of it. When
kids who had heard about my illness asked me about it, I would
deny my illness. I think in a way I hid my illness and denied it
to convince myself I wasn't sick. I realized later on that denying
my illness was foolish and not necessary because people did not
seem to be bothered by the fact that I had an illness.
In high school, I continued to keep my illness to myself as much
as possible, but if people asked me about it, I would tell them
that, yes I was sick, but that did not make me any different
then anyone else. I continued to participate in regular gym class
and just sat out when it became too much for me. Once my breathing
returned to normal, I would rejoin the class. This made my illness
very obvious to my classmates as time went on. I discovered
that I no longer cared if people knew. All that mattered was that
my friends knew about my illness, accepted it and treated me like
every other teenager. I no longer was disappointed that I could
not play sports or take dance classes. I focused my energies on
what I could do. Singing was the biggest part of my life because
it was one thing I could do that I loved.
I lived a fairly normal life through my teens. I sang in the school
choir, babysat, taught Sunday school and the bible lessons at the
Children's Choir of my church, joined clubs at the high school,
worked with mentally disabled children and hung out with my friends.
So, when Flolan was mentioned by my doctor in 1998, I cringed.
I did not understand why I needed Flolan if I was still able to
do everyday normal things and lead an active life. Between school
and all my after school activities, I was constantly on the go.
Flolan? What would that do to my normal, active life???
During one visit, the cardiologist mentioned Flolan to my parents
while I was out of the room. The doctor wanted my parents to discuss
it with me privately at home and come to the next appointment with
a decision. When my parents got home and discussed it further,
they realized they did not fully understand Flolan so therefore
my parents never mentioned it to me. They wanted the doctor to
explain it to me so that I completely understood what Flolan was.
At the next appointment when my doctor asked what my decision about
Flolan was, I was completely shocked and I was angry that my parents
had known but never mentioned it to me.
After much shock, anger, resentment and everything else that comes
with your doctor springing this on you, I made my decision. I realized
that I was sixteen and enjoying the life I was living, and I did
not want Flolan. I knew that I was not emotionally, mentally, or
physically ready for Flolan. I was still so active and felt that
I was not severe enough to need Flolan. My parents fully supported
me on my decision because they have always let me make decisions
about my treatment. I told my doctor that I did not want to go
on Flolan and that did not sit well with her. She called me stupid
and told me I was making a mistake. After that incident, I told
my parents that I no longer wanted to see that cardiologist. I
had never liked her but we went to her because she was very knowledgeable
in the PH field. My parents agreed with me and we switched PH
doctors.
To this day I have yet to go on Flolan. I know many people who
have gone on Flolan and it has helped their lives immensely, but
Flolan at that time was just not the right choice for me.
Senior Year I went to the prom and had an awesome time. I danced
the night away, sitting out when it got to be too much for me.
I went to the prom with a close friend who knew about my illness
and had always been very understanding about my limitations as
we grew up. He understood that at times I would need to sit down
to rest and he would always sit out with me. My two best friends
and their dates also went to the prom and they also were very understanding
when it came to my illness.
I participated in Senior week activities and was thrilled to be
graduating from High School. Graduation day was something the doctors
never thought I would get to see, but I proved them wrong. I almost
missed graduation because I pushed myself too hard. The desire
to be like everyone else was never stronger then on this day. Before
the graduation ceremony, students were asked to walk laps around
the school as they got us into alphabetical order. Because I didn't
want to be singled out, I did the laps with my class. By the time
we were done I was visibly short of breath and we still had to
walk to the football field for the ceremony. On the way to the
field, I told a friend I couldn't breath and a teacher who was
not aware of my illness overheard and pulled me aside. She had
another teacher call an ambulance which arrived in a few minutes.
They attempted to take me to the hospital but I refused to go.
I knew that if I just sat down I would be ok. In the end, I got
to join my class out on the field and received my high school diploma.
My next hurdle was college. My whole life I dreamed of becoming
a nurse and I got the chance to make my dream come true. I was
accepted to college and in August 2000 I moved into the dorms.
My parents and I were all nervous about me living on my own. It
turned out to be a great thing because I have taken charge of my
illness and have learned so much about it in the process. Unfortunately,
my freshman year didn't turn out to be so great. When the nursing
instructors found out about my health issues, they became very
concerned and wanted me out of the Nursing program. I was accused
of withholding information about my health and yet there was no
place on the application to record medical details. There was no
discussion about the matter and I was told to change my major.
I informed them that I would not change my major. Their concern
was that I would not be able to manage the duties of such a physically
demanding job, that I may not be able to run an infant to the nursery
quickly, for example.
These people had just met me and were already speculating at what
I could and could not do. I am the only person who knows what I
can and can not do and I knew that I could do nursing, even if
that required running an infant back to the nursery.
I fought to stay in the program and won. Over the first year I
took notice that the instructors were carefully watching me, waiting
to see if my illness was going to affect my performance. During
my sophomore year the professors laid off and nothing was ever
mentioned about my illness again. I not only stayed in the program,
but I proved them wrong and graduated with an Associate's Degree
in Nursing in May 2003.
One of the many things that kept me going over the years is my
love of singing. I always felt that singing saved me because it
gave me something I could do, that I wanted to do, even though
I had PH. I started singing when I was 3-years-old at my church's
children's choir. Singing had always lifted my spirits.
Over the years I have sang in the middle school and high school
choirs. When I arrived at college, one of the first things I did
was join the choir. The college choir has taken me places I never
thought I would be able to see. I traveled to Canada in May of
2002 with the choir and in May 2003 I got to sing in Carnegie Hall.
I have also gotten to sing back-up for Judy Collins, Race for the
Cure, at an opera awards ceremony, Renaissance Fair, Longwood Gardens,
and many more places. All the events have required hours of practice
to prepare for the event, and required lots of walking once we
got to the event. No matter what, I was determined to accomplish
these things and my choir director worked with me so that I could
participate in them.
Another thing that kept me going over the years were the people
in the Delaware Valley PH Support Group. When I started going to
the support group meetings, I did not want to be there. I did not
want to sit around and talk about my illness or feel sorry for
myself. After a few meetings I realized that this group was a good
thing and would help me out in the long run. We didn't sit around
feeling sorry for ourselves at all: we inspired each other to do
things and to take action on our disease and our life. The bond
that grew with these people over the years was incredible. One
of the members of the group—Carol Aserinsky, an original
founder of PHC—helped me set up a teens listserve and immediately,
I
was in contact with teens my age going through the things I was
going through. I made connections with teens from Australia, California
and many other places. It was wonderful to talk to others who understood
what it was like to be a teenager with a chronic illness.
I do not run the listserve anymore, but I still keep in touch
with several of the teens. Some of my original contacts have lost
their battle with PH and that only makes me more determined to
live my life to the fullest. Carol was one of my biggest supporters
when it came to Nursing School and she also inspired me to learn
as much about my illness as I could. She made me want to take control
of my life, my illness and to make the decisions that were the
best for me, not for someone else. She made me realize that each
PH patient is different and that what may work for one may not
work for someone else. Each of us much choose our own course in
life. She also wanted to see me achieve my goal of becoming a nurse.
When Carol lost her battle, it made me more determined to become
a nurse. I wanted to finish nursing school in memory of Carol but
most importantly for myself.
Recently, one of the teens, Michelle, lost her battle with PH
and her mom told me: "Michelle was inspired to do things because
of your example of going to college and setting your goals to become
a nurse and help others." I never realized that I had impacted
her life in such a way. Never in a million years would I have thought
that me living life normally, never giving up, would have inspired
her to go on to college after graduating from high school. Even
after her health deteriorated, she continued taking college classes
online. The weird thing is, I think she inspired me to keep my
goals and she helped me cope with everything that goes along with
PH. I feel that without her I possibly would have given up on some
of my goals in life that became difficult to achieve. However,
because I always had someone to talk to who understood, I would
feel better about my situation and keep persevering.
I have proved so many people wrong over the years, including myself.
I have shocked myself with what I am able to accomplish with
a little bit of determination. I realized that the more determined
I became, the more I could accomplish even with this illness. People hear the term illness/disease and assume things about
you. I have learned to show them that just because I have a chronic
disease it does not mean that I have given up on life. I realized
that I am not suffering from this illness but living with it.
Over the years I have created a mentality that I still live by
today. I won't let PH get in the way of anything I want to do.
I don't let anyone tell me that I can't do something because
I am sick. If they try to tell me that, I prove them wrong.
I have recently returned to Nursing School to further my education.
I am expected to graduate with a Bachelor's Degree in Nursing-
August 2004.
November 03, 2003
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