Downward Slide

Hi,

I’ll make this as brief as possible. A year ago I presented with 3rd degree block, was diagnosed with sick sinus and given a Pacemaker. Exactly 6 months later I received an ICD. Exactly a year to the day I was first diagnosed, I was shocked while working out. I’m sliding down a slippery slope to a state of unhealthy and I’m terrified. I just turned 50 and have been exceptionally healthy my entire life. There has been no diagnosis in a year, just two devices and increasing damage to my heart. Any suggestions as to next steps? I’ve had every test imaginable with no answers. 

6 Comments

second opinion

by Tracey_E - 2019-04-09 14:05:17

Have you had a second opinion? I mean fresh eyes, not someone in the same practice who is likely to nod and agree with whatever their coworker said. It might be worth a trip to a place like Mayo or Cleveland. 

Thanks!

by NowBionic - 2019-04-09 20:10:12

Thank you Tracey_E! That’s been my gut feeling. Even if the info remains the same, at least I can be confident I’m being heard and seen. This is all so frustrating. 

Agree on 2nd opinion

by CyborgMike - 2019-04-10 13:31:38

I agree with the need to get a second opinion. You need to be your own advocate. There are only a handful of cardiac centers in the US that are good with complicated cases. Mayo, Cleveland are the biggest and best. You could also go to Scripps in SoCal.

The ICD/pacemaker collects a lot of good information and has a lot of adjustment settings. My first question would be "why did I get shocked?" -- was it an appropriate shock? If it was appropriate (thank god!) then what was the underlying issue? If it was innapropriate then can the device be adjusted upwards?

Since you were working out, I would assume it was due to a sustained fast rate that the device thought was sustained fib. I am about your age and very active (now back to running 3 miles a day) and I have my ICD set very conservatively, so it doesn't accidentally fire. But... everyone's situation is different. Get educated, advocate for your own settings, and then get back to working out safely. 

Thanks CyborgMike

by NowBionic - 2019-04-10 22:28:37

The shock was appropriate, I was in VFib for the first time. I’ve seen my EP and Dr. next step is UCSF to see a specialist EP. Fingers crossed for some answers or direction 

The lucky ones

by CyborgMike - 2019-04-10 23:18:41

Consider yourself lucky for the appropriate shock. We are all on borrowed time thanks to these marvels of tech. 

I've heard very good things about UCSF. Hopefully, you are seeing one of their heart failure docs for a thorough evaluation.

i don't know anything about your condition, but there are parallels with my situation. I am also 50. I have a functionally and structurally normal heart, but SSS (severe bradycardia) and VTs with extertion. My diagnosis was CPVT. The pacemaker fixes the bradycardia and the rate response of the pacemaker seems to keep most of the VTs away at higher bpm. I take Nadolol (a beta blocker) to dampen the rhythm and keep from going into Vfib with exertion. The ICD is the fail safe. So, there are dozens of conditions that could cause SSS and VT/Vfib, but the docs at UCSF should be able to help diagnose and get the right combinations of treatment to keep the Vfib away. 

Good luck! 

 

Wow CyborgMike!

by NowBionic - 2019-04-11 00:54:11

Very similar!! SSS was my initial diagnosis with Brady, third degree block and anything in between. I didn’t have the faster rhythms originally. I am thankful for the shock as I needed it. Guess I just wished I wouldn’t. Thanks for the encouragement. I’m also on a beta blocker (makes me feel like I’m moving through water) that was just increased. They turned off my rate response when I still had a PM because of battery drain, which was when I had the Tachycardia event that led to the ICD ( coincidence?).  I’m also HIS paced which adds a little complexity to my readings. I’ve done a ton of research into all aspects. My EP is leaning toward sarcoidosis (due to some scarring) even though my tests aren’t conclusive, thus the trip to UCSF. 

So thankful for this forum. Normalizes some of this absolutely strange world I’ve entered. Thanks again for sharing. 

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