Hi All, So last time I wrote a note, I was in the hospital, getting started on the Sotalol. Good news on that front- the muscle jerks I was having have almost completely stopped! And I've also been able to stop worrying about the 38 other serious side effects that the Amiodarone causes. That's a big relief.
I have come across a snag, and we're not sure if it's from the Sotalol, or just my electrical problems acting up. I've been having these "episodes" where my heart does some weird beat, then my heart rate goes up to about 100, the wind is knocked out of me, I feel a strong squeezing my throat, and I get super lightheaded and feel like I may black out, but I never do.
To figure out what's going on, my doc gave me a King of Hearts. That's the heart monitor that looks like a pager that I had about a year ago. Perhaps you'll remember it because when I press the record button it makes a "hoooonnnnnkkkkk" sound for about 30 seconds. Why yes, as a matter of fact, it is embarrassing. Oh well, it works.
I met with my electrophysiologist yesterday to review the results. And she was completely confused. It seemed like every reading conflicted with another. She consulted with my cardiologist, and she couldn't make heads or tails of it either. They definitely saw odd rhythms, but luckily, none of them are life threatening (love to hear that!). The gist is that my heart's electrical system seems to be acting more erratically though. She mentioned "progressing electrical disease". I didn't ask more about that. I'm not really ready to process something like that yet.
She also ordered a PET scan to check for sarcoidosis. Evidentally, sarcoidosis is a very rare disease that can cause dilated cardiomyopathy (what I have, that the docs have always thought was caused by the flu). Diagnosis can take a long time because doctors rule out about everything under the sun before they go down this route (I guess because it's rare and it's hard to find). Sarcoid (that's what all the cool kids call it) is an inflamation in your body that can cause all sorts of problems, however cardiac sarciod is one of the rarer manifestations. They don't know the cause, but it does usually show up in people 20-40 years old. Anyway, I'll let you know what the test says when I get it (I'm not sure when that will be yet).
Oh, I don't know if I've told you- I've been volunteering for Lifecenter Northwest for awhile now. They are our local organ donation organization and I love them. : ) This Monday, I'm going to a taping at our local news station (New Day Northwest on King 5 for you Seattle peeps) for a segment on a mother whose son was killed protecting a stranger as she was being beaten in the street. She's sharing her story to raise awareness for organ donation. So I'm going to be in the audience with some other volunteers to show support for this brave woman. I'm excited to do that, although I've got to figure out a TV appropriate outfit. If you see a curly haired girl in the audience, wearing stage makeup and a power suit, it's probably me.
Ok, that's all for now I guess!
Much Love, Jana