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RIMy ARVD/C story:
Tachycardia began happening daily back in the summer of 2023.
Heart Monitor worn for 14 days until NOV 1st 2023
Nov 1st call from cardiologist to go to the hospital
Nov 2nd direct admit to Chandler Regional Hospital
Nov 3rd, echo, EKGs, 2 CT scans done
Nov 6th, MRI complete for official diagnosis of ARVD/C
Nov 7th, ICD (defibrillator) implant surgery
Dec 20th genetic test results came back positive for PKP2 gene mutation causing this cardiomyopathy.
My daughter also tested positive for the same gene mutation and she is scheduled to see a pediatric EP next month after a long battle in court with her dad about getting her the medical monitoring she needs.
Since my diagnosis, I can’t run anymore. But since my implant surgery and starting meds I can lift without feeling winded, I can clean and put groceries away again, I can vacuum and sweep… I can do all of these daily things that were triggering episodes prior to being diagnosed. 🙌🏻
I have zero anxiety now whereas before I was struggling with what I thought was bad anxiety. Turns out it was just my heart racing and my body trying to tell me something wasn’t right. That’s completely gone now! 🫶🏻
I have not been shocked yet, the parameter is set to 190 bpm, so if my heart rate goes above that, it’ll happen. It hasn’t yet, and I’m hoping it never does 🤞. Pretty amazing considering it was happening daily for months prior to surgery and medication.
My life is certainly different now. I’m aware of every little thing my heart does and doesn’t do that it should. I carry my meds with me around everywhere and set alarms to take them as I have to take them diligently and on time.
But this doesn’t define me. It won’t define me.
Thank you for sharing your stories with me. Thank you for reaching out. You’re not alone. Keep pushing for health and happiness- I can’t tell you how many times doctors didn’t take me seriously and just told me I had anxiety when it was much more.
Know you always have a friend in your corner rooting for you. ☺️
@riseup_rochelle
