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Hello Help Desk!
I see that there is a topic/discussoin area for Teens wiht Long QT ....... Can there be a section for survivors/patients of Long QT who are OVER THE AGE OF 40 (faaaaar form being teenagers)
I know we have a set of issues that just do not fit elsewhere. ~ Thank you!
~ Peace & Blessings,
Wendy Long QT (Type 2) survivor
Mom to 6 year old with Fetal Alcohol Syndrome
Foster mom to a 6 year old with drug exposures
Long QT syndrome Lisinipril Menopause Atenolol Fetal alcohol syndrome Metoprolol
I've been diagnosed with Long QT sicne I was 14 ~ I am not scared and thinking that I made it this far so I am "over it" ~ far from it (LOL)
Just not a lot of 40= patients ....and now that I am 40 I am doing the hormone thing again (I thought that was all behind me as a teenager) ~ I am triggered by emotions ...... so peri-menopause is kicking my butt some days ` what else is coming up?
I had no "history" of arrythmia or any family history that I was aware of. After my SCA when the family started talking, then we discovered that there have been several people throughout the family line that died early of CA, with NO previous history. I did have some problems with fainting when I was a teenager and they (docs) just told me I was not eating right, blah blah blah, I think they did do one ekg, and told me no more sports. hmm.
Anyway, after my arrest in January 04, I was in the hospital for nearly two weeks, and they implanted an ICD. I also take 100 mg's of Atenolol a day, and Lisinipril. Also potassium daily.
I had my first SCA in Nov. 2006 due to LQTS2 at 46 and received an ICD. It was so odd to me - Never had ANY symptoms or a family history prior to that. After having a second round and 8 shocks at 47, was put on a heavy dose of metoprolol. It took a year to adjust to the meds and feel human, but life feels like it's starting to return to normal. Finally. It's a nice feeling really. Now I can worry about mundane things like traffic, weather, etc! But I'm still left with the question....How do I go for 46 years with nothing - and then, whammo!
My husband's family has a very similar condition. He lost his mom and brother in 1976. The family's genetic condition was diagnosed a few years ago after his sister had an SCA. She had this family history and had a few "spells" growing up where she would pass out after some emotional excitement. Her SCA happened in her 30's...and she, like me, was saved by an AED.
I guess my question is really the wrong one. How is it that we were so lucky. I lived with this genetic conditions for many, many years....and yet my heart waited until the conditions were just right to act up. I was surrounded by 20 or so coworkers in a Federal building with an AED and a nurse, 7 blocks from a major hospital with an exceptional reputation for cardiac care. Had things happened earlier (when AEDs weren't so prevalent) or elsewhere, things could have turned out completely different. I really do feel blessed.
Enjoy this beautiful day - it is a gift!
I'm in...SCA and diagnosed at 42! Do you have an ICD or are you managed with meds?
Woohoo! I'm up for that one, being the ripe old age of 50. Soon to be 51. :-) Anyone else's kid's think they are ancient, sick and pitiful? hehehe, not really, I just tell them they think that when they are always after me, "Be careful Momma, Don't you think you might should ask the doc about that Momma?" ughhh. Good to know they love me though and are not trying to get rid of me.
I was 45 when I had my first SCA, so I still qualify. ::grin:: Seriously though, I would be most interested in discussing some of the problems we are facing as well.
Thanks!
Long gone are the days when it was thought if you made it to the age of 40 you were safe from cardiac events from Long QT Syndrome!
Check out this linkhttp://circ.ahajournals.org/cgi/content/full/117/17/2192
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