118 posts tagged with Pulmonary Atresia.

Scar Wars

by Christy Sillman on Monday, Sep 12, 2011

I love how unsuspecting people are when they play a game of scar wars with me. You know—the game where someone shows off their gnarly bike accident scar and then the whole room starts comparing scars. I usually hold back, start off slow with my skin cancer scar, or my busted knee scar, and then—WHAM—I pull up my shirt a bit and the whole room goes silent. It’s awesome, and I’ve learned to use it to my advantage over the years.

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Music Helps My Heart Beat

by Christy Sillman on Thursday, Aug 25, 2011

One of the most vivid memories of my last open heart surgery in 1998 was driving through San Francisco on our way to UCSF with the music blaring. I felt a pit in my stomach as I contemplated whether that day would be the final day of my life. I felt an urge in my legs to tremble but instead I was forcing them to tap to the beat. The song was “Hit Me with Your Best Shot” by Pat Benatar.

“You’re a real tough cookie with a long history, of breaking little hearts like the one in me” — was I imagining God or my surgeon when I sang along to that lyric, or maybe just fate?

“That’s OK, let’s see how you do it. Put up your dukes, let’s get down to it. Hit me with your best shot. Fire away…”

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The Heart Disease Label

by Christy Sillman on Wednesday, Aug 10, 2011

I remember the first time I sat in an adult cardiology waiting room. It was refreshing to have adult-themed magazines to look at and I enjoyed the peace and quiet of the elevator music. I still stood out from the crowd, but this time instead of being the oldest patient in the room I was now the youngest. I wasn’t quite sure of what to expect when I transitioned into adult cardiology care, but I never anticipated how much I would ultimately need to advocate for myself in a world where the title “heart disease” is synonymous with coronary artery disease, or acquired heart disease.

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Seeing Myself in My Patient’s Eyes

by Christy Sillman on Tuesday, Jul 26, 2011

“Why did you want to become a nurse?” is a question I get often, especially after people learn about my congenital heart disease. I’m not even sure how to answer that. Some days I hesitantly ask myself the same question.

It’s not like I entered nursing school with the final goal to be working in the pediatric ICU; in fact, I feared that unit the most out of all our rotations—well, that and the operating room. They both hit a little too close to home. My goal was to get my RN license and go work in a clinic or another non-hospital related nursing area. But something happened when I started working with patients in the hospital—I related to them in a special way because of my experiences, and they appreciated it.

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Guinea Pigs

by Christy Sillman on Wednesday, Jul 06, 2011

“I apologize in advance that you are sort of my guinea pig,” Terri Schaefer told me before she posted my blog as the first on the ACHA website. It made me laugh. Doesn’t that sort of sum up the ACHDer experience—being the guinea pig?

I can think of all the medications, experiences, procedures, and surgery techniques that were used on me that were considered experimental or “new.” Some of these were breakthroughs in CHD care, such as the use of prostaglandins in the newborn with CHD to keep the ductus open while they awaited surgery. When I was born in 1980, this drug was experimental and my parents “took a chance” when their only other option was to take me home to die.

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Meeting My Own Personal Rock Star

by Christy Sillman on Thursday, May 26, 2011

Patient or nurse, nurse or patient — who am I? This was a question I faced often while I attended the Adult Congenital Heart Association's national conference in Los Angeles about a month ago.

I had intentions to stretch myself between both worlds — to attend both patient and health professional sessions. After all I am both a nurse and an adult with congenital heart disease.

My name badge didn’t specify “who” I was, but next to my name badge, my role was very clear. My “zipper” isn’t that red anymore, but it is visible to those who look for it. I caught myself staring at attendee’s chests, looking, wondering… professional or Zipper Club member?

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The contents of this blog are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.