About twenty years ago my older sister had an episode that almost took her life. Through this, she discovered she had a genetic disorder they called Long QT. At the time it was very foreign to doctors as well as us. Nobody had ever heard of this. Matter of fact, the doctors did not even know what to do. As she was treated they ended up putting a pacemaker in her. Since then she has done well and not had any problems.
She told her siblings to go and get checked. I decided to go and get checked about five years ago. The doctor did an EKG and confirmed that I had Long QT. There was no concern or medication given at this time. In the fall of 2000, I felt strongly that I needed to be checked again through a cardiologist. If was confirmed and further testing was required due to the episodes I had experienced earlier in my life. Which started with the feeling of lightheadedness, weak, tingling in my fingers, resulting in lying down, aware of my surroundings but unable to move for a short period of time. The test done was a stress test on my heart. After reaching 200 beats per minute the doctor shut it off and determined that I would need an ICD. In October of 2000 I had an ICD put in.
During the time I was in the hospital, my wife had our four children checked. We found that our three older children all had Long QT. This was a very devastating time for my wife whose health was affected by this as well. My children: Tia age 14, Colton age 12, Tyler age 9, are all being treated with beta-blockers. This has been successful, other than it has affected their lifestyles, mainly giving up competitive sports and feel somewhat different from other kids. They have adapted well and have moved on. We are so lucky that we didn’t find out about Long QT in a devastating way as so many families do.
After being out of work for six weeks I went back and tried to resume a normal lifestyle. Unfortunately this affected me emotionally. There was a sense of inadequately and fear of the unknown. I experienced my first shock from my ICD in the summer of 2001. Then again in the fall upon waking up in the morning still lying in bed. Another time in the morning while getting kids off to school. Again on December 2001 while shopping at a store late at night, they were stocking shelves and dropping pallets quite often. By the end of our shopping trip my ICD went off three times in a row. The doctor advised me there was no need to come in unless it continued.
In April of 2002 my ICD went off 12 to 15 times. This resulted in emergency hospitalization to determine why it was going off. It was determined that between the trial medication I had been taking for only five days and a bad lead on the ICD was the result of the multiple shock therapies. This resulted in being opened back up to check and replace both leads. Again recovery and being out of work resulted once more. After this experience the fear was so great that I was scared to be left alone, was afraid to be very far from a hospital or out in public. Afraid that the ICD might go off and draw attention to me. This time was much more devastating to me. I consulted with Dr. Vincent and his staff many times hoping for reassurance that all would be well even though my cardiologist assured me, this was not enough. I was told it would take time.
Through this period I experienced many changes in my life. I became withdrawn, depressed and caring only for myself and this was a time I wish I could relive. Many people were there to help me, but I didn’t want their help. They stood by me through it nonetheless.
Today, November 2003, it has been 19 months since my lCD went off multiple times. I am now forty years old and the fear of this happening again is still there but not as strong and controlling. I’ve been able to return to work, been able to go out hunting, fishing, playing basketball and have felt somewhat normal doing so. I still have Long QT and always will. But I know that research and technology will continue to make this something we can live with. With the support and love from my wife and family, I have been able to move forward with confidence, encouragement, knowing that I can still be accepted and loved no matter what. I hope that I can help educate and make aware to people more about long QT. Through opportunities by educating teachers, EMS personnel and general public, together we can make a difference.
This story was written in 2003 by Mark. In 2022, Mark’s daughter, Tia, who is mentioned in this story, joined the SADS staff as our Family Support and Communications assistant.