20 posts tagged with Single Ventricle.

A Lesson on CHD and Acceptance

by Marissa Mendoza on Tuesday, Jun 12, 2018

I had been studying for my last college exam when a friend from the Adult Congenital Heart Association asked if I would become involved with a “Congenital Heart Disease (CHD) Assembly” in Northern New Jersey. The assembly was for third to fifth graders, and their school was doing a week-long CHD awareness/fundraising event prior to the assembly. Just over 22 years ago, I was born with six complex congenital heart defects, and I underwent three open heart surgeries before I was two. I was within weeks of finishing my nursing degree when I was asked about the assembly, so I was eager to get involved with an event so close to my heart not only personally, but also professionally.

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It All Started With A Stretch

by Ellen Greenberg on Friday, Feb 26, 2016

For the last two years, I have been dealing with chronic migraines—the worst kind. My cardiologist is not sure why I am living with this type of chronic pain. I know that many of us CHDers live with chronic pain. My neurologist is bewildered as to what to do for me—due to my multiple congenital heart defects—and common migraine medications have been difficult to administer.

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My Very First Congenital Heart Walk

by Ellen Greenberg on Wednesday, Oct 28, 2015

This month I had the pleasure of participating in my first Congenital Heart Walk benefiting the Adult Congenital Heart Association and The Children’s Heart Foundation. To say that I was motivated and excited would be an understatement, because my goal is always to raise awareness.

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The Power of Knowledge

by Ellen Greenberg on Monday, Jul 20, 2015

I think that as CHD patients we may have more medical knowledge than the average person. It is said that knowledge is power. But as CHD patients, is this power helpful or hurtful? The more we know, the scarier our own personal situations can be. This knowledge can also be a helpful tool. I like to feel the positive—that it is power.

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An Open Letter to My Pediatric Cardiac Team

by Ellen Greenberg on Tuesday, Mar 24, 2015

Dear Pediatric Cardiac Team,

I’d like to tell you that April will mark a huge milestone in the course of my life, as it will be 30 years since that tiny first grader—me!—Ellen Jenny Greenberg, had her first of many surgeries. Yes, you read correctly—30 years since my classic Fontan procedure. I still remember explaining my surgery to my class, and one boy saying, “So you’ll be dead during it,” and my quick response was “No, the machine will be breathing and beating my heart for me.”

It would be a treat to somehow see all of you and give you a great big hug and kiss for providing me with this precious gift of life.

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My Normal

by James Bachenheimer on Tuesday, Jan 27, 2015

CHD is the best thing to ever happen to me.

Growing up in the 1980s and 90s with a congenital heart defect was not easy and it sure did not feel "normal." After all, my generation had to rely on playing outside, which was something my little defective heart could not tolerate well. In typical Jimmy fashion I would play till I passed out or ended up in the hospital with my doctor always saying, “Jim, you know your limits.” Of course I knew my limits, but even at an early age I would push myself until I fell over—I just wanted to be normal.

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The Fearless Factor

by Ellen Greenberg on Tuesday, Dec 09, 2014

As I sat down to write about limitations I caught an episode of Fear Factor. I have never watched this show in its entirety; however, I found myself both engrossed and grossed out by it. This past year I began to realize all of my limitations and how to work within them.

I am always the girl with the can-do attitude. I often strive for things that seem impossible to many. For instance, I recently received a master’s degree. I auditioned for America’s Got Talent last year, because it was in Manhattan—close enough to where I live and I owed it to myself, for the sheer experience of the thrill, nothing more.

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The Fear of Someone Missing Me

by James Bachenheimer on Monday, May 05, 2014

Being born with a single ventricle, my life was filled with challenges before I even knew how to hold my head up. By the time I was five years old I had already undergone four open heart operations, so I never really knew what it was like to be a healthy, active boy. I was Jimmy, the kid with the bad heart, the kid who you couldn't tackle while playing football, the kid who wore heart monitors to school—my health would always be what defined my life.

I reached adulthood and already had another operation under my belt (I was 11), the only one I truly remember before my 20s. I honestly never thought I would live to 30 but here I was about to turn 29. I was feeling pretty decent. On my 29th birthday I walked into a bar and sat down and chatted with a pretty blonde bartender.

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