One of the intriguing blogs I’ve been reading recently is that of Dr. Wes. His post today about Long QT Syndrome being the ultimate paradox just struck a chord in me. I tried to comment on his blogsite, but got all tangled up in permissions, passwords and signatures (I’ll have to figure out how to do that someday), so I thought I’d just leave my thoughts here. Check out his blog today.
Well said, Dr. Wes, well said.
As a cardiovascular NP and the mom of a beautiful daughter diagnosed with Type I Long QT Syndrome at age 17, the goal is – in this journey of ours, Mom, Dad and daughter – to live a normal life with LQTS. Yes, she is treated with the requisite beta blockers and has an ICD. Would we not want to know? And face the risk of sudden cardiac death from this weird disorder where often the first symptom is death? No, emphatically no. The trick … the goal … is to live life to the fullest. I think she’s doing just that.
She’s graduating with a BSN in December, and has a job lined up in the CCU of our large teaching hospital (my alma-mater unit, I’m so proud!). Oh! And she just competed in her 6th triathalon.
Life is good.
Wow, what a lovely mention and wonderful story. I wish you and your daughter all the best.