INTRO

My name is Andi. I live with a heart condition called AVNRT (AV Node Re-entrant Tachycardia). We are not sure how long I've truly had this, but my family believes I was born with it even though I was barely diagnosed in 2011.


So I will start with a quick intro, I've never written a blog so I apologize ahead of time if it sounds weird, I think it's weird to talk about myself HAHA!

I had a few fainting episodes growing up which seemed random, but now in retrospect, I had the same exact feeling and warning signs/symptoms as my most recent syncope episode which led to a series of events leading to a diagnosis. I know now that they were all caused by tachycardia and not dehydration like previously believed.

I had a cardiac cryoablation on November 19th, 2011 at Lucille Packard Children's Hospital, a branch of Stanford Univ. Hospital that considered the AVNRT "cured" (a cessation of declined quality of life). I was 19.

Now I am age 22, going on 23.

I am one of the few 2% that regressed after the ablation, and now have had to resume cardiac care.

I'm here to share my story.

I started a bucket list in 2008 and one of the items needing to be checked off of my list is to create my own blog. So here goes nothing!

Thursday, February 20, 2014

Gotta Love Experiments!

As most people with chronic disorders/diseases already know, medications are trial and error, repeat, repeat, repeat, repeat, repeat, OOO WE FOUND SOMETHING THAT WORKS! And then your kidney function or liver function declines and fails or something like that....then you've gotta start the hunt for a new medication regimen again.

Well, looks like I may have found the med that works for me (so far, knocking on wood)
So now the next step of the experiment is too see what you can and can't tolerate. Foods, workouts, etc.

So tuesday I put my skates back on for roller derby and attempted the sprints! I needed twice the amount of recovery time than planned for, but nothing cardiac rehab and diet can't fix.

I also tried the evil.....
                                           ......caffeine

And low and behold, it made me sick! my heart started going crazy almost immediately.
Ok, so caffeine is STILL a no-go. But that's ok, at least I know now instead of figuring it out at work.

I also gave a "long day" a test as well. This included one load of laundry, a mile jog with my pup, doing a mini photo shoot for one of my roller derby teammates, cleaning the room and living room, and going to the store to buy a survival kit for the flu (boyfriend came home from work throwing up and with a fever)

With the medication regimen I'm on now,  I can say I have about 8 spoons left, where normally by now I'd only have a couple left. (If you don't know what I'm talking about, go back to my "Measuring Spoons" entry)

So now I can get dinner made, feed the dog, get my other half set up in bed so he can rest, and finish drying some clothes so I have a set of scrubs for tomorrow. Looks like I will do OK for a long enough period of time that we can instead plan a heart surgery around my schedule and my boss can work on getting me set up in an office ready to go so I can work immediately thereafter and not have to worry about anyone but myself for once (this is an almost IMPOSSIBLE thing for nurses to do)

So hopefully this pans out as I plan!
Gotta get started on looking for more experiments :)
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