Toxic Shock Syndrome - My story
A former Cook Children's patient details her battle with TSS
Lindsey Clark was admitted to Cook Children's 20 years ago, after suffering Toxic Shock Syndrome. Lindsey has agreed to share her story with us.
I was 11 years old during the summer of 1996. That summer was full of swimming with friends, my first flight for a weekend at Six Flags, and one bad bout of strep throat. I had heard very little about Toxic Shock Syndrome and didn’t know that it was about to change my life.
It started with body aches that we thought was a result of riding one too many rollercoasters. I deteriorated quickly. After two trips to our local ER, I was admitted. That Wednesday, my physician had the grace to admit he didn’t know what was wrong and arranged for me to be airlifted by Teddy Bear Transport to Cook Children’s. I remember the intensity of my family and the staff as they tried to stabilize me to be airlifted. I remember three angels in blue jump suits, Cindy, Darren, and Gerald. I don’t remember much of the flight but will never forget being wheeled off the plane and seeing the pilots with hats over their hearts. As incoherent as I had been – it was at that moment I realized that I was really sick and might die.
I don’t remember much of what happened to me after I arrived at Cooks. I was taken to the ICU in a medically induced coma on a ventilator for the next 5 days. My family was told to prepare for the worst and it was during that time that I had what most people would call a near death experience. It’s almost impossible to describe the feeling of waking up and realizing you’ve literally missed days of your life. At some point, I had been given an arterial line and had a board on my wrist to keep it steady. I was still in a lot of pain and very confused. I was diagnosed with TSS caused by a strep infection.
I was able to move out of the ICU the following day with a long recovery ahead of me. I was released from the hospital on September 15th – exactly two weeks after my symptoms began. Although I was excited to be home, I was far from back to normal. I was still in immense pain. Every lymph node in my body was swollen and one eventually had to be drained. I lost my hair, my skin, and my nails. My muscles deteriorated; I had to participate in physical therapy. I was not able to return to school for two months because my immune system had been wiped out.
Even though it’s been nearly 20 years, it is still difficult for me to talk about what happened. As terrible as the experience was, I am incredibly blessed. Non-menstrual TSS still has a high mortality rate. I have no doubt in my mind that had I not been transferred to Cook I would not have survived. I look at my scars and I am forever grateful for the compassion and knowledge of the many people that took care of me. They saved my life.