Cardiology Patient Stories

Shortly after he was born in early 2008, Trevor King was diagnosed with Long QT Syndrome, a condition that could cause sudden cardiac death. He may be the youngest patient ever to get a pacemaker-defibrillator, a device that sends an electric shock to the heart when it detects a potentially life-threatening heart rhythm. But in the months following his birth and diagnosis, Trevor's mother Rhonda began participating in an online community for patients with Long QT and their families, and she began to question whether he had been correctly diagnosed. Here's the first part of her story of deciding to seek a second opinion for Trevor: http://www.youtube.com/watch?v=AFYiaMuZY4g Below is Part II of Trevor's story, as Mrs. King describes what happened when she and her husband arrived in Rochester, Minn. to see Dr. Michael Ackerman:

Update 1/26/09: ABC's World News Tonight ran a story on Jan. 24 featuring Tanya. You can view and read it here. KSTP-TV (Minneapolis) and its sister ...

  Imagine a hospital room in the cardiac unit, with a patient, her family, doctors and nurses, all discussing the patient’s status and treatment options. So who are the experts in the room? Are they the doctors and nurses who have studied, practiced and devoted their lives to understanding and treating cardiac diseases? Are they the family members who can read the patient’s face and body language and know what the patient is too scared to ask herself? Is it the patient, who, after all, is the only one who really knows what her body feels like?

Mayo Clinic heart patients and family members returned to Mayo in Oct. 2008 to share stories of their care through a program called "Stories of ...