I was 22 years old when I suffered a sudden cardiac arrest during an intramural basketball game. I collapsed mid-court and I am blessed, lucky, fortunate (whatever you want to call it) that CPR and an AED were used and got my heart started again. I was diagnosed with Hypertrophic Cardiomyopathy and had an ICD placed under my left clavicle. I was young, fit, ate well, and worked out daily – I was confused and frustrated to learn that I had a heart condition.
While my family and friends were tremendous supporters, I wanted somebody I could relate to, who would understand my frustration, who would provide support and camaraderie. I also wanted to give back, raise awareness and be there for others going through similar health scares.
Connected by Hearts provides education, resources and opportunities to engage with peers going through similar heart “stuff.”
It is nice to be able to ask open and honest questions to those who have gone through or are going through similar situations. Are you scared when you workout? Where should I have my ICD placed? Are your parents breathing down your neck all the time to make sure you’re safe? These questions are just a few of the ones I have had over the years.
I hope that Connected By Hearts will allow new kids to learn, connect, support, and laugh together as they live beyond their heart condition.
—Tori
Tori-
Great story! I went into cardiac arrest when I was 17 years old! I was a basketball player myself and was lucky that a man gave me CPR and sustained me until an AED came in an ambulance. I also have HCM! I would love to answer your questions and please let me know if this helps.
1) At first when I was diagnosed, I was scared. I was scared of going into sudden cardiac arrest and I was scared that my ICD would shock for no reason and I would get hurt. Now over time, I have learned what my body can handle and what I feel is too much. I know if I feel funny and when to stop. I am not scared to workout. I jog, run, have done yoga, and lift light weights. When I work out, I feel great about myself!
2) As for your ICD, my suggestion would be the Sub-Qtaneous ICD which goes on your left side. I used to have the one on the left side of my chest, but I got the Sub Q ICD and I LOVE it!
3) My mom is definitely very cautious of me and is constnatnly making sure I am doing what I need to do. Although it may get frustrating at times, I have come to understand that I am her son and she is trying to keep me safe.
If you have any other questions, I would love to help you. I have had HCM for 10 years and have learned to live a very normal life with the condition. You can message me on here or email me at mike@inaheartbeat.org.
Thanks!