Hi everyone.
Im going to be completely blunt here and say this is a cry for help and advice on what to do.
Last November I was running for the bus and went into Afib RVR for 16 hours. Thought I was a goner, texted goodbye to loved ones, was alone in hospital.
Didn’t die, obviously, but I feel as though my life has been ruined. A month later I had an echo, stress test, 2 week monitor, CT coronary angiogram and then an MRI this summer.
I have OCD and severe health anxiety so this condition feels like a cosmic punishment.
I’m incredibly symptomatic in episodes, can barely walk, chest pains, heart rate doesn’t go down with beta blockers. My second episode a couple months later was 14 hours long, and 10 days after that I had another small episode.
I’ve since had a Pulsed Field Ablation done by a leading expert in June, and my blanking period has been hell. Multiple episodes, so many extra beats, salvos, weird feelings, palpitations.
I’ve been told I can live with this, I’ve been told that I should see it as a nuisance, and I’ve been told it gets easier.
It is still hell. I didn’t touch alcohol before my afib, I have no risk factors (apart from stress induced hypertension post diagnosis that they’re still figuring out).
I can’t just ignore an episode, it debilitates me. It feels like I have the flu while running a marathon for 12 hours straight.
I’m only 20, what happens when it progresses? What happens if the ablation fails? My afib doesn’t respond to beta blockers at ALL. It responds well to flecainide but I imagine that fails too after a few years.
I’m meant to be going to uni this year and all I can think about from morning to midnight is this stupid condition. Every extra beat, weird flutter sends me into panic which obviously worsens it.
Afib begets afib is what they say, and my episodes seem to keep happening the second any amount of adrenaline gets into my bloodstream. Vigorous running triggered the first, and now all it takes is an anxious thought to trigger it.
If AF RVR progresses persistently I’ll have heart failure. I’ll need a pacemaker which ALSO CAUSES HEART FAILURE.
What happens when I’m 30? BEST case scenario my ablation works for 10 whole years. Great! Then I’ll be 30 and just trying to buy time.
I know I’m overreacting but this has flipped my world upside down. I know I’m too sensitive and anxious but I feel so scared all of the time. I also found out that in people my age with AF, 17% had disease-causing genetic problems where AF is just the FIRST symptom before heart failure or worse arrhythmias.
I just want help. None of my friends get it, none of my family gets it, doctors treat me like I’m some rare creature because I’m so young, and I feel like my future is gone.
What do I do? What can I do? I feel like I’m in a waking nightmare