I've made the decision to participate in my EP's research study, so I'll be having a cardiac biopsy within the next several months.
The test will involve taking a number of small samples of right ventricular tissue from my heart and sending them on to a specialist in Ottawa (I keep picturing little bits of my heart being stuck in the post). While the biopsy is mostly for research purposes, it could tell me a number of things, including whether I'm able to pass on Brugada syndrome to any children I may have. Dr. Sneakers is also hoping that, since I can't have an MRI with my defibrillator, he'll be able to use the procedure as an opportunity to look for scarring related to my HCM.
We will, hopefully, kill a small flock of birds with one stone.
Here's what I've learned from my piles of paperwork: similar to my EP study, an incision will be made in my groin or neck (I'd vastly prefer my groin - since I'm going to be awake, I'd rather people were fussing around down there than right in my face. I think it's going to be neck, though). A catheter will be guided into my heart. It will have a scissors-like handle at one end and a little snipper at the other. I'll be awake and able to see fluoroscopic images of my heart on screens above my head - by far the coolest part of my EP study.
I'm excited both to learn more about my condition and to have the chance to participate in research. I've benefited so much from research in my lifetime - I've gone from a little kid eating crushed up aspirin every day and sitting out gym class to an active adult whose disease activity is, comparatively, very well controlled. I've got a box in my chest that could save my life one day. I've got drugs that keep my heart rate and blood pressure nice and even. Pretty lucky.
So that's that. Not technically a whole lot of fun, but we'll learn from it, and I'm looking forward to that. And I'd never pass up on opportunity to munch on some hospital food.

2 comments:
Good luck Helen. In a way, it all sounds kind of exciting! :) I hope you will share your results with us.
I hope it goes well, Helen. You are a brave + generous soul!! :) L
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