ZAPPER/Update May 31st/2000

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ZapUpdate

June 1st 2000

Moving a web site has about as many pitfalls as packing up the family to relocate in a new house! Only one thing is holding up the move at this point: Figuring out how NOT to lose all the (priceless) previous bullentin board (BBS) postings. We may have to start a new BBS... and take all the old postings and create a separate BBS archive. Stay tuned. The Zap•Life.org activation may happen at any time.

We have another treat this issue: Another first person account, this one from a Virginia teenager named Amy Snead. Like so many of our readers she battles a problem called Long QT syndrome, a disease that has left Amy's family with a huge sense of loss.

As you might expect, the Snead family has faced a lot of medical bills - which has really eaten into the college money they had stashed away for their daughter. As you read Amy's story, consider giving this courageous family help if you are able to afford it. Now.... Here's Amy's story:

Keeping a Positive Attitude

When Faced with Adversity

The implantation of my pacemaker/defibrillator was a traumatic experience at the time. I think nothing of it now. Yes there was a time of grueling tests and nights of worrying, but all in all I am glad it happened. I am a happy eighteen year old living a normal life. I just have a guardian angel that lives four inches below my left shoulder.

The whole process of receiving an AICD started with the unexpected death of my cousin. He died while doing chin-ups in gym class. He was only thirteen and had never had any cardiac complications before. It is now assumed that he had Long QT syndrome, and with this syndrome the first symptom is usually death. The family was devastated and mourned at the puzzlement of a young mans death. Because his death was unexplained then, no one knew how to protect themselves form the same fate.

The death of another first cousin a few years later received more attention. She died at the age of fifteen after running up the stairs and slamming the door to her bedroom. She had been having problems with dizziness, fatigue, and passing out. She was on a beta-blocker at the time of her death. We now know that she had Long QT syndrome and because of her I am finishing up high school and looking forward to college.

My mother immediately became alarmed because I was suffering from the same symptoms. The family physician said I was dehydrated, so I drank water. My symptoms stayed and so did my mothers worry. Finally it was suggested that I see a cardiologist. I was under the care of a funny cardiologist who dreaded my questions concerning my participation in sports. He was the same cardiologist who had treated my cousin. I saw the look in his eyes when he talked of her, I hope I never have to look at someone the way he did me.

I went through a series of tests, EGK's, a tilt-table; I ran on treadmills and even had dye injected into my heart. I remember driving to Duke University for genetic testing. I really didn't have to do anything during that test, but everyone in my family participated in the test.

At the time of the test I was on a beta-blocker and a pill for neurocardiogenicsyncope. My cardiologists decided the the best decision for me would be a ICD. I was game and so was my family. I received my bionic part at the end of October 1996. I remember very little. I joked with the doctors and nurses beforehand asking if I could court down from one hundred like they do on TV. I tried, but I didn't make it very far, maybe to 89. I spent the night in ICU because I needed a heart monitor. I felt the same, a little nauseated, but all in all the same Amy.

Then at one point I felt a funny feeling in my chest. I kept asking my mother what it was, but she didn't know. Then my doctor said it was my pacemaker working. It felt so funny, kind of like a burp and butterflies mixed together. it took a while to get accustomed to that, but I did.

When I went home I remember passing out Halloween candy with only one arm because I wasn't allowed to raise my left arm. I was also denied the privilege of running or doing anything that might disturb my ICD. I became a huge couch potato. I could tell you what show came on when and what channel.

I went back to school and showed off my scar, charging a dollar to students I didn't like. Four years later I'm a senior ready for college. I still go in every three months for an EKG and a battery check. My ICD is a part of me, I have no problem explaining to people why I have a small scar and bump on my chest. I tell them I have a pacemaker/defibrillator.

If they want to know more, I tell them that somewhere between my head and my heart my wires get crossed. That usually satisfies most people, but others are very curious about Long QT Syndrome, I guess that's why I'm writing this.

I am glad to say I've been accepted to Newport University and will be a goalkeeper for the field hockey team. I am limited from track and swimming, but I have learned to listen to my body and control my activities when symptoms arise.

I want to say thank you to my cousins for giving me a chance at life, without them I could never had lived successfully. Thanks to my family for trying not to be scared in front of me and thanks to Dr. Betrand Ross for trying again.

Thank you Amy Snead for sharing your story with us.

People interested in helping Amy getting to college can get in touch her mother: Shelia at she_la54@...

If you are new to the ZAPPER, the archives are full of good stuff. Among those our last four feature articles. The first item below is an invitation for you to help one of our readers (and ICD recipient) fight another kind of health threat. All are inspirational:

Pedaling for Good Health

Josh's Battle

's Miracles

Diary of an AdventuringRoo

That's all for now. Stay well!

Duffey,

Zapper Publisher