Avatar universal

Wpw, atrial fibrillation, ablation

I have wpw syndrome which is almost certainly not genetic (likely a congenital defect). I have had symptoms of palpitations, racing heart, chest discomfort, and anxiety, for several years. I had EKGs which the Delta wave pattern did not show up for many years(though one doctor brushed off something odd she saw) and felt further brushed off as a young healthy woman who was just anxious. Finally my new GP listened to me, annoyed, and the Delta Wave appeared on the EKG. I was sent to the cardiologist and they did an echo (structurally normal) and holster monitor, which showed a few PVCs but nothing major (happened to be a good day for me). I complained more that the symptoms were bothering me. I was irresponsible at that time and accidentally forgot about the EP study, so never go that done. Did have a low dose of metoprolol PRN if needed, but never took it for fear of my BP dropping. Since then I just dealt with it, made further lifestyle changes, reduced caffeine etc (with exceptions), and otherwise forgot about it. Oh and btw, was interested in getting ablation, but at that time my cardiologist was not worried and convinced me it wasn’t necessary!

THEN, I became pregnant. Didn’t even think twice about my wpw. Didn’t think about how when you’re pregnant, your cardiac output increases dramatically and how much further strain it is on the heart (and how this becomes the time for many to have there first arrhythmia episode).
I was rendered high risk by an obgyn that referred me to a high risk OB practice...

In the meantime I was working as a psych nurse and very stressed by the unsafe working conditions (people getting beat up and me being vulnerable, switched units, but staff cruel -no lie- Iregret not quitting at that time, but was relying on insurance, and pressure to keep working)

Then at 28 weeks, calm and sleepy, (VERY VERY little caffeine exposure that evening less than a cup of green tea) I was in bed with my husband, turned to put my phone on the nightstand and then out of nowhere I felt something. My heart just suddenly started racing and would not go away with valsalva menuevers. Decided it was time to go to the ER within a few minutes, was admitted rather quickly and they tried modified valsalva, metoprolol IV push and that did not work, by BP was plummeting and my heart rate all over the place. I had atrial fibrillation/SVT with a ventricular response and a HR above 200. They decided it was best to send me to a higher tier hospital via helicopter. There I was sent to maternity ward C-section ready, and they discussed the best approach. They tried one more medication which also did not work (thankfully short acting) and then it was time.
The previous team discussed the possibility with me initially, but this was the reality now. Gave me propofal and then shocked my heart back into rhythm. I woke up, thankful that I was still pregnant.

(I will not go into complications with baby, which may or may not have been related to my heart problems)

Now I have a healthy and handsome little baby, and I am scheduled for a cardiac ablation procedure at the end of this month. What the Cardiologist/EP thinks is that the A. Fib is caused by my wpw, so the ablation should cure it, if in fact it is the cause, and the pathway eliminated (or blocked).

Anyone have some insight? Any similar stories or comments?
Why do you think that even my initial cardiologist was not worrying about it? Because it is so rare, and I was not presenting with complications at that time?
I suppose there were a few problems I can think of, which is a. Me not pushing the issue with previous doctors b. Some doctors brushed it off or maybe didn’t know enough, c. At some points I brushed it off myself, d. The importance of getting an ablation and being given that option to patients.
Overall though, the communication breakdown and lack of listening skills of SOME doctors.

Btw I am 30, symptoms since early teens and on flecainide and metoprolol since the episode during my pregnancy.

Now I’m not trying to blame anyone, it’s just hindsight here. However, I do think that aside from me not pushing the issue and aggressively complaining, and my own mistake of not getting the EP study years ago, what do you think could have prevented this atrial fib episode? Is there lack of education regarding communication, bias towards young seemingly healthy individuals, and/or lack of education about wpw syndrome? Any advice from here on out?
1 Responses
Avatar universal
Actually I would like to correct one point, my initial cardiologist scheduled me for a stress test NOT an  EP study (which would have made sense)
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