Diagnosed recently!

Personal stories of individuals and families affected by Kawasaki disease
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kawasakiVictim
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Joined: Mon Dec 09, 2013 10:35 pm

Diagnosed recently!

Post by kawasakiVictim » Mon Dec 09, 2013 11:39 pm

Hi,
I'm 37 years old reasonably healthy male in Maryland. I survived a heart attack recently and only then the doctors figured out am a Kawasaki patient. Now am little scared since they are only treating me on the medicine (I'm taking 3,4 different types of thinners alongwith aspirin and metroprolol to control blood pressure).
My arteries are balloon shaped as well and even thought i asked my cardiologist a couple times if there is any possibility of an operation/bypass etc. He typically says we'll treat you with medication.
Looking for advice/suggestions what to do. My kids are too young (under 3)

ENC
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Joined: Fri Dec 13, 2013 2:21 pm

Re: Diagnosed recently!

Post by ENC » Fri Dec 13, 2013 2:35 pm

Hi there -- thanks for sharing and so sorry you are going through this. I regrettably have no advice since my child had Kawasaki's recently and is young, but I was wondering how the doctors knew it was Kawasaki's? And what are the size of your aneurysms? How many do you have? And is this the first time you've had heart problems? Sorry for all the questions -- those of us with younger children are very keen on hearing the stories of older survivors. Thanks so much.

uno99
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Joined: Sun Nov 24, 2013 10:36 am

Re: Diagnosed recently!

Post by uno99 » Tue Dec 17, 2013 2:29 pm

Hello,

I'd be interested to know more about you as well. What were your other risk factors (smoking, cholestrerol, proper diet/excersise etc)

cmorey81
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Joined: Mon May 06, 2013 6:51 pm

Re: Diagnosed recently!

Post by cmorey81 » Tue Dec 17, 2013 10:21 pm

Hi,
I was just curious if you had any signs or symptoms prior to your heart attack? I had KD over 30 years ago and recently I've been having pretty bad chest pains. I had blood work, ekgs, chest xrays, and a stress test. Everything came back normal. The chest pains continued though, and much to my doctor's dismay I kept going back lol. A month ago they did an ekg and it came back "slightly abnormal" according to my doctor. When I asked what that meant, he said it was registering that I'd had a heart attack. He was quick to assure me that it couldn't be right and it must be reading wrong. Suddenly this infallible test (when it said I was fine), was faulty? Anyways, long story short they finally referred me to a cardiologist, and I was set up with an echocardiogram. I just had it done and I'm currently waiting to hear the results. I'm just curious if you had any angina before your attack?

Thank you,
Crystal

kawasakiVictim
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Joined: Mon Dec 09, 2013 10:35 pm

Re: Diagnosed recently!

Post by kawasakiVictim » Fri Dec 27, 2013 4:52 am

Hi All,
Sorry for late reply. @cmorey I never had any chest pains, but interestingly since my childhood what i remember i'd shortness of breath issues but my doc assumed somehow its some kind of allergy. It happened at times at crowded places or after speaking a lot over the phone esp when i was walking.
@uno99 I was healthy otherwise, but my cholestrol is on the higher side (genetically) and yes i did eat not so healthy meals, esp since i like red meat a lot. The only thing that escaped me for nearly 3 decades is lots of walk. I weight just around 145 lbs when i had attack and now i put on some lbs since then, around 150 now.
@ENC when i had attack and remember it was only shortness of breath without any pain initially, my wife called 911 and once i got my initial treatment in the local hospital, they found the shape of arteries weird so they sent me to John Hopkins and @jhu they identified it as due to kawasaki. The thing i don't like about them is they are doing a lot of research on me, like treating me as an object :) I've seen 3,4 diff cardioligists so far, though i want to get settled with only one guy. But anyways What else you want to know? feel free to email me with any questions you have.

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