When I was born I had a congenital heart defect called
Transposition of the Great Arteries. I
ended up in Boston because they were the only hospital doing a new surgical
procedure to correct the defects. I
ended up being the first to have the surgery.
I also was one of the last. Only
two of us survived. Luckily, after three
heart surgeries at Boston Children's (and one at Cincinnati Children's that I
had at a few hours old) I have had very few cardiac issues related to the
Transposition since. All because of the
wonderful doctors and nurses in Boston (and at the hospital I was born at and
in Cincinnati) I was able to live. My
parents also gave me life by researching and choosing Boston. I also think God had to have played a huge
part. I can't explain it any other
way. My parents, the doctors, the nurses
and God gave me a chance to live.
Now that I was having new medical issues Boston seemed like
the only logical choice.
In the fall of 2006 my mom and I traveled to Boston and met
with the new head of the cardiology department.
He listened to me. He was the
first doctor to truly listen to me in years.
He let me explain everything -
the passing out, the dizziness, the exhaustion, the crazy heart rate,
the headaches no longer being able to
walk more than a short distance, barely being to hold my head and arms up, the
crazy adrenaline rushes I was having, the constant vomiting, the
overheating. He sat there and listened
to everything I had to say for a few hours.
He told us he knew what was wrong.
The next morning I went upstairs and had a stress test. I failed miserably. My heart rate sky rocked, my blood pressure
bottomed out, and I passed out after a minute or so. She lady running the test said she'd seen
people in heart failure do better than I had just done. Right after that, and lying down for a bit, I
went back to the cardiologist.
He said the test confirmed his suspension. I had Postural Orthostatic Tachycardia
Syndrome or POTS, a form of Dysautonomia.
Dysautonomia literally means the dysfunction of the autonomic nervous
system. I had a diagnosis! After years, I had a diagnosis! It all started to make sense!
I was prescribed some medications, including Midodrine, and
told to come back in a few days.
I'll never forget the first time I took Midodrine. We went out to eat after the appointment to
celebrate. Yes, to celebrate! We had an answer! We were so relieved! We were sitting at the Ye Olde Union Oyster
House when the Midodrine started to work its magic. My mom started to panic because of the look
on my face. She asked me what was
wrong. I replied, "the room stopped
spinning." I just sat there trying
to take it all in all. It was
incredible. It didn't entirely solve my
vertigo and nausea, but I couldn't remember the last time the world was this
still. I'll never forget that. It was
one of the best moments of my life.
The Midodrine, Florinef, and some beta blockers, along with
increased liquids and sodium helped some.
It didn't solve my problems but I was satisfied. I was in a much better place.