A few days after my return from the hospital, my defibrillator once again started beeping. As instructed, I called the Pacemaker/Defibrillator clinic at the hospital and uploaded the data from my device.
They called back fairly quickly and told me to come directly to their office, so I did. They sat me down and activated the wireless connection to my defibrillator and started monitoring the situation. I’ve had this done many times before, but this time multiple people were coming in and discussing what was going on. After a while, the person from Medtronic let me know that the device was now regularly reporting erratic voltages on one of the coils, the same one that has spiked once the prior week. This was an indication that things were getting worse with that coil.
After much discussion, they decided to disable that coil. The device is capable of being fully-functional without it, so it wouldn’t put me at risk, but the doctors wanted to keep me for observation again while they continued to collect more data and discussed things in more detail with Medtronic’s support.
That night, in my hospital room, my electrocardiologist stopped by to give my wife and I an overview of what was going on and the options ahead of me. It was recommended that I have the bad lead removed and replaced. There is an option to leave it, but that carries other risks.
For those that don’t know, the lead is a wire that goes from the device and into my heart. I believe the phrase used seven years ago was “snaked through your artery and screwed into the inside of your heart.” It’s been seven year, so my body has built around that intrusive object, making it rather firmly implanted. I was told that seven years was right at the cusp of when things get more complicated to remove. There are risks that include heart attack during the procedure, the need for open heart surgery (1 in 50), and scarring on the heart, which is higher in my case because at 53, I’m still considered young. This is one of the few cases where my age actually works against me.
It’s going to be like the process and recovery of having the defibrillator implanted in the first place, but with a much longer and more dangerous twist. Given my situation, my doctor is recommending I get a surgeon who has considerable experience with this process. It’s not often this happens, so that isn’t always possible. The hospital I go to is one of the top-rated cardiac hospitals in NJ and someone there was one of three (the others: one in PA and one in NY) that he recommended to me. Unfortunately, the closest isn’t available until sometime in January.
I don’t know if any of these three are covered by my insurance. That’s tomorrow’s assignment. I also don’t know if the other surgeons are available. My device, however, is stable running on one coil. I need it done, but not immediately. I can take the time to do this right and will. I’m thinking it will happen in early January.
I was discharged from the hospital this evening and still trying to process all the frightening little details. I won’t lie, it’s been very stressful and I am worried. This is pretty heavy stuff.
I’m appreciative of the time and effort put in by my doctors and Medtronic so that I can do the necessary prep work (medical and personal) before this happens. I’m also happy to be able to spend the holidays with family instead of in the hospital, which is what would have happened if we couldn’t stabilize the device.
By the way, the latest tech has 18 years of experience. He considered this rare. Not the only he’s seen, but the number was tiny, particularly in comparison to the number of devices he’s seen.
Complete list of posts in this series
Defibrillator Saga 1
Defibrillator Saga 2
Defibrillator Saga 3
Defibrillator Saga Conclusion
Cory
I have had my dual chamber device since 2013. I just turned 48; so, I feel like I might be in the same category as yourself. Yesterday was the second time my device alarm for lead impedance went off . . . Like a French Ambulance . . . Every four hours. The last time was this last December and they just had me wait until I was covid free to come in and have it shut off. That was it. Today, they scheduled me to come in, shut the alarm of and one of the coils. Thank you so much for having this up for people like us to see. I didn’t see my Electrophysiologist today; but, have an appt in two weeks for him to explain what is going on and “if, what or when” anything needs to be done. They are saying not worry, but after so many visits to him and cardiologists, since 2013, I could tell something is up . . . if I don’t need to worry about anything, he usually gets one of his staff to call and let us know . . . not move my June appt up three months.
Thanks again!
Neil Clarke
Glad it was of some help. There’s so little information about any of this online, I felt somewhat obligated to get it out there. Been very surprised by the volume of traffic it’s received and it’s been nice knowing that it has helped a few people through what can be a really disturbing and stressful process.
Yeah, their responsiveness always makes it clear when something is seriously wrong. Giving you two weeks suggests that they consider you safe for now, which is how they treated me after disabling some of my devices functionality. If I was more reliant on the defibrillator, they probably would have insisted on replacing it right away.
I wish you the best of luck with whatever course of action they have to take. Ultimately, they had to take everything out of me and replace it. Complicated stuff (particularly given how long it had been there), but I’m glad to have had it done. There’s comfort in having that safety net back in place, even if I’ve never needed it.
DMC
My husband had one of those devices. A short time after he had the device implanted he had gone to see his cardiologist and a few days later he began noticing his energy and breathing were diminished and he couldn’t figure out why this came on so quick. So the doctor contacted him to come in because it had turned it down (what ever that means), so he went in they turned it up then he began feeling better. Fast forward a year or so, after an appointment he again start feeling the same only this time no letter or call from the doctor. He died March 12, 2021.