Unsure What To Do With Faulty ICD - Needs Replacing And Been Given Options
Hi folks,
I know it's always said don't take health advice off Reddit but I'm curious about other people's personal situations and history to help me decide on what to do.
At 38 years old, I had a sudden cardiac arrest. Thankfully it happened in a public shop next to a hospital and I was revived by nurses who just happened to be in the right place at the right time, thankfully with a working defib unit.
I spent a week in a hospital and had all the tests under the sun done on me and they found nothing wrong with my heart or anything that would explain what happened to me. They fitted a Boston Scientific ICD into me.
18 months later and I've not had issues with the device until a month ago when I got a call after my weekly press of the button on my bedside cabinet, asking me to go hospital. They told me they had heard a noise on the device and were concerned there might be a faulty lead. They changed it to a different vector (I was trying to keep up with the verbal lingo) and a week later I'm back in the hospital as it's got worse with more noises. They change it back to the original lead but warn me that they have long term concerns over the device.
Yesterday I woke suddenly at 4am with a false shock. The first time I've had one. I wasn't exactly sure that's what it was. It made me sit up in bed suddenly. But it wasn't too much of movement and I mustn't have made a noise myself as it never woke up my wife who was asleep next to me. I wake her up and tell her what happened and we come to the conclusion it was probably a bad dream or indigestion even. I press the button on my bedside cabinet.
I get a phone call the next day (today) with the hospital confirming I've had a false shock. I go into the hospital and they tell me they believe the device is likely to lead to further false shocks and isn't suitable anymore. They tell me I have two options;
- Have surgery to replace the device with a new one that also adds in a third lead from the right hand side
- Have the more invasive ICD fitted which is worse surgery and they say could lead to serious complications the longer you live with it. Such as infections, leak issues etc. They tell me they don't usually give that one to people my age unless their bodies reject 1.
They are saying my body shouldn't reject 1 as I've passed all the tests for having it fitted. And yet, my body has essentially rejected this one as the lead has become faulty or out of place presumably.
One theory as to why this has happened is that I've lost 4 stone in the 18 months since I had surgery. Perhaps this has changed the muscle around the device and it's come out of place?
Anyway, all this is frustrating and a psychological nightmare for me. I said to them - What if I didn't get anything fitted back in and lived my life?
They told me that was an option but not one they would recommend. I asked for some time to think about it. They agreed to turning my device off and allowing me to go home (though there specific advice was to be admitted whilst mulling it over but they didn't protest too much when I said I'd rather go home).
I really don't know what to do. I thought when I had my ICD fitted I had bought myself 8 years before the battery ran out before I needed to go in. But it's not even been 2 years and I've got an issue.
I don't know if I can mentally put myself through another surgery to get a replacement fitted. To go through with the anxiety of the whole thing, to have them turn my heart off again to make sure this new device is working properly, to have to live with the existential crisis of having this device hang over me with the possibility of going off at any moment. I was fortunate it went off when I was in bed and it didn't cause me any danger. But now if I'm crossing the road or driving (though obviously not for the next six months) I could cause serious harm to myself and others with a false shock.
My heart is in good shape and they've never had any unusual readings since I came out of hospital almost 2 years ago. Is it the stupidest thing in the world to not get one fitted? Has anyone decided to reject the ICD and not get it done? And if so, what kind of thing have they done to make sure they are as monitored as possible 24/7? I have a defib at home and I'm always aware of places where they are fitted and people who are with me know about my condition. It's never full proof obviously but I've lost faith in the device and can't help but shake off the feeling that every year I'm going to have to do this. And I may never suffer from a real episode ever again.
Weirdly with them turning my device off temporarily whilst I decide on what to do... I've never felt more free. For once I'm not thinking about the device at all and feel normal.
I could in theory have people to watch over me and could invest in tech that keeps tabs on me at all times... has anyone ever done that or am I living in fantasy land?