.·:*¨¨*:·..·:*¨¨*:·.INTRODUCTION THREAD.·:*¨¨*:·..·:*¨¨*:·.

Posts from Jan. 1, 2018 to the present. Plus important announcements. (ICD warning sounds)

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KissedByLucille
Posts: 6
Joined: October 22nd, 2017, 3:21 am
Location: Nashville, TN

Re: .·:*¨¨*:·..·:*¨¨*:·.INTRODUCTION THREAD.·:*¨¨*:·..·:*¨¨*:·.

Post by KissedByLucille » October 23rd, 2017, 10:22 pm

Hello, again! John here: a 46 year old stay at home dad. Non-ischemic cardiomyopathy coupled with poor eating & exercise habits led to heart failure in 2014, a little over a decade after initial discovery of cardiomyopathy.  This necessitated an implantable cardioverter defibrillator with cardiac-resynchronization therapy.  Discovery of short episodes of AFib during NIPS testing.  New EP monitoring episodes of AFib since 2015.

On August 18, 2017 I received my first shocks after my defibrillator was "fooled" into thinking my heart was in a dangerous rhthym. Unaware that I was experiencing an episode of AFib while exerting myself in the front yard, a "perfect storm," as my EP put it, struck and struck hard!  My lower ventricles attempted to keep pace with the artia, which my Medtronic Viva Quad XT CRT-D read as a dangerous rhythm (if anyone out there can describe to me in even greater detail what the doctor mentioned above, I'd be thrilled to hear another version of the events/explanation...I think multiple perspectives often offer a patient a chance to understand the mechanics of their problem/condition on a deeper level).

This was my first experience with 'therapy', and, to be honest, it took me several seconds to recognize it as such. I thought something had struck my head, as there were Municipal Employees working nearby with a small crane to remove the yard waste I was scrambling to gather for them.  As I walked backed to a chair in my yard, the ICD fired again. At this point, I shouted out to the workers for help, directing them to call 911. After a third strike, anxiety, then panic, began to take hold.  I had no idea what was happening.  I experienced no symptoms prior to the first shock, simply the expected winded sensation one might feel after vigorous activity (Incidentally, I had worked this intensely before without incident). In fact, I had actually slowed my work pace down considerbly prior to the first 35 Joule burst. 

My wife had just pulled out of the drive 20 minutes prior, to collect the kids from school. I was attempting to text her, telling her not to come home, when the device fired again and knocked the phone from my hand. When I reached for the phone a few feet away, it was down and wouldn't turn on again...ever again. It had been having problems, but something happened to it during the event. Fortunately, my neighbor, Kelly, stepped up at this point. I gave him my wife's number, the message that she make a detour, and he did the rest. Meanwhile, the Municipal Worker, remained nearby delivering info to the 911 agent. I remember him saying that the frequency of shocks delivered was increasing and that I was turning very pale.

Try as I might, I simply could not slow my heart rate. I felt utterly helpless. Again, not knowing what was happening or why, and not having read any literature on the mechanics of 'therapy' and how to respond to it in the moment, what the heart is capable of sustaining, or, what role nearby muscles play in the experience and sensation of pain, I thought, "This is it. I am going to die today...right here, right now!"

My defibrillator fired another 20+ times in nearly as many minutes including 2 or 3 times from the moment the paramedics arrived. Two Valsalva movements, some Versett, air conditioning and finally getting underway calmed me, and dropped the heart rate below the shocking threshold. Fortunately my EP was on duty and rushed down to the ER where he identified AFib as the source of the problem. The machine was turned off for a few minutes reset from a 188bpm threshold to 200bpm while they loaded me up with Amiodarone. An atrial ablation followed on October 2, 2017.

I attended my first ICD support group on September 9, 2017 at Vanderbilt Medical Center here in Nashville, TN, USA.  The group refers to themselves as The Vanderbilt Shockers -- what a name, eh?  The doctor addressing the group that day gave an excellent presentation on the History of Defibrillation. After hearing my story, what he termed a "nightmare scenario," he suggested, with a gentle pat on back, that I take all the Xanax my EP was courteous enough to prescribe.

That's me story mateys.  And while it's often a straightforward case of poor machinery -- whether electrical or plumbing -- I say, be on the look out for whales and mind your inner Ahab, for both be beasts layered with anger, impatience, envy, dreaded vengeance...and good intentions! In other words, "Take 'er easy, Dudes!"

P.S.
Let me say, too: I am sobered and humbled as I read more and more of the stories here. While I do have it bad and need to come out of denial (still smoking, drinking the occasional drink, and eating like there's no tomorrow) I've thrown a few too many pity parties for myself. Sites like this are providing a great deal of perspective on my experience with the ICD and health in general, and will, in time, turn the energy expended on self-pity and denial into something more useful.
Medtronic Viva Quad CRT-D, December 2014

No man is entirely useless, he can always serve as a bad example!

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ginala2002
Posts: 4
Joined: December 23rd, 2017, 6:53 pm

Re: .·:*¨¨*:·..·:*¨¨*:·.INTRODUCTION THREAD.·:*¨¨*:·..·:*¨¨*:·.

Post by ginala2002 » December 29th, 2017, 7:48 pm

Hi,
My name is Gina. On 12/14/17 I went to my GP with what I thought might be a inner ear infection. I had been experiencing lightheartedness and feeling easily winded. Before I had time to even think, they had called an ambulance to take me to the hospital because I was experiencing ventricular tachycardia. They admitted me, did some testing (echocardiogram, stress test, blood, etc). They started me on Magnesium and a beta blocker and sent me home the next evening. The next day I ended up back in the ER with same symptoms. They again admitted me for ventricular tachycardia. I went through more testing and apparently along with VT, I have non ischemic cardiomyopathy. They start me on meds. The meds lower my heat rate so they decide to implant a pacemaker/defib. Once that's in, they are able to control the VT with meds and the pacemaker manages my heat rate. They don't know why this happened, possible virus, but from what I can tell that's the default answer. I was released from the hospital on 12/22/17. I've been feeling OK, tired. Find my emotions are a bit up and down. I had the first Dr Appt to check my implant and apparently no VT; the pacemaker is correcting 85% of the time.
I am 61 and have 2 daughters (31 & 2 yrs old), and a grandson. I am married, and my wife is 19 years younger. This feels like it came out of nowhere and I am still reeling, worried, hopeful and tired. Glad to have found this forum. Reading people's stories makes me feel less alone and more hopeful.
-Gina

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