Life post pacemaker

Hi everyone, I'm new to the forum and I've had my pacemaker since March 2023. I'm 34 and adjusting to life with a PM and more surgeries to replace the battery going forward.

I jwant to share my story. I was quite fit in my 20's but I always felt like I had something wrong with my heart. There were times when I couldn't control my heart rate with breathing and at other times I had strange feelings and 'auras' where I felt unwell, like a general feeling of doom. When my mum was alive, she told me a story that she saved my life when I was 6 months old, she found me blue in my cot and not breathing - she told me she dropped me from a small distance and it got me breathing again. That story stuck with me for a long time.

I had spoken to doctors about my concers and issues but never got anywhere. It all culminated in me going unconcious (syncopy) at 32 whilst in the middle of a conversation with another person. I hit my head on a metal chair on the way down and that gave me undoubtable evidence to go back to the doctor and investigate further. I actually dreamt during this time of unconciousness and awoke feeling like I had taken a big nap, but extremely still extremely confused. I was lucky there was around 5 people that witnessed the event so I could explain what happened.

I got sent to the heart and brain specialists. After 3 months of testing, I actually got the all clear from both. I was elated as I was worried it might have been brain related, and that isn't easy to resolve. I went on living whilst in the back of my mind that something is still wrong. The problem was everytime something happened, it resolved itself spontaneously. Bloods and ECG's came back normal.

After a few months, I then had another syncopy event happen at home. This was unwitnessed and happened as I was getting out of a chair. I woke up face first on the ground with carpet burns to my face. I let me wife know what had happened, we called an ambulance and they cleared me after the usual tests.

Knowing something was still wrong, I went to a new doctor and pushed the issue. I asked for a second opinion and got a new cardiologist. We went through more rigorous testing but again could not find the source of the issue. My new cardiologist suggested I get a loop recorder, which initially scared me, but I decided it was the only way I was going to figure out the issue.

After about 6 months, my cardiologist called - great news, we found arrythmias! I was relieved, but it hadn't prepped me for what was to come. One Friday in March, I went out with my partner to a live show. I was sitting in a seat, and the show was about to end (it had been going for around an hour). I felt the aura feeling (feeling of doom) come over but didn't say anything. I don't know how long I was unconcious sitting, but my wife said it was 30 seconds or so. She was so concerned, she was shaking me for what felt like an eternity, but I regained conciousness.

That feeling of regaining conciousness was terrible. I felt like all energy had been drained from me - completely exhausted, weak and destroyed. I was barely able to hobble out of the show, with my wife supporting me. I sat down for a bit to regain my composure, and (stupidly) rejected the offer of calling an ambulance. My previous experience were these events came and went, another would not occur for 3-6 months. How I was wrong. I asked my wife to drive me to the hospital which was around 20 minutes away.

I remember seeing the hospital and outside emergency. As we pulled up, the feeling came over me and I went unconcious again. When I woke up, my wife was opening my car door. I instantly projective vomited straight outside my car into the gutter. Luckily as I was outside the hospital, someone rushed out with a wheelchair and brought me inside. I was destroyed at this point, I had no energy, my skin colour had left me and I could barely speak. I was rushed into emergency.

I had my loop recorder card, so I told the doctor and they grabbed the device recording information. I can say without reservation that if I had not had that device implanted, no one would have had any clue what was going wrong.

Turns out my heart had stopped twice, for 14 seconds each time. It was sobering to see the fax print out with an entire line of no heart rate. The next few days were a blur - the attending cardiologist telling me I was young and didn't need a pacemaker, then after a transfer to my hospital my cardiologist telling me I did. I trusted my cardiologist and agreed it was needed.

I count myself extremely lucky. It took less than a week to go from no pacemaker to pacemaker. I guess that helped with all of the emotions that naturally come on, I barely had time to consider until after the surgery. When I went for my first checkup, a week after the surgery, my specialist nurse was shocked to see me, she outright told me that it's rare to see someone survive 2 events like that where the heart spontaneously restarts. That absolutely floored me.

Getting used to a pacemaker and leads has been interesting. The first 2 weeks I thought I was dying every single time it went off. No one told me the device has a self testing mode! It's designed to check whilst you are asleep, but I barely got any sleep in those first weeks. I was hyper vigilant and worried about everything the PM did.

I realised though that it takes time to adjust. I saw the device specialists, read up about pacemakers and asked questions. The self test mode? Can be switched off. What does it mean when X happens? Nothing really, just the device doing it's regular thing. Can we adjust a setting here? Sure, no problems. How long does my battery have? 12 years give or take. Do the leads need to be replaced every 20 years? Not really, I've met people with leads in them older than me. It's getting answers and further understanding that's helped me mentally deal with the implant. I was terrified in those first 6 weeks post implant that I'd pull out the leads and have to go back. Realistically, I wasn't doing anything that could actually make that happen. My partner was super supportive during this time, she helped me with everything, even getting dressed.

Now, 7 months on, I'm comfortable with my PM and it's part of my identity. It's still weird to have something sitting in a pocket of skin (and mine sits quite high), but you learn to adjust. I went through a phase of touching the area quite a lot, and I had to retrain my brain to stop messing with it. I've had one return of the feeling of doom aura, but my pacemaker did it's job and I felt it jolt my heart back. It's a great piece of mind. I've returned to sport (wearing a PM protector), running and exercise. I still struggle with sleep though (I've always been a side sleeper), so there's a lot of tossing and turning to fall asleep and get the right position. I also stopped drinking alcohol and reduced my coffee intake to 1 shot a day.

So overall, it's been a unique experience. Thanks for taking the time to read, I just wanted to share and to help others dealing with life pre or post pacemaker. It has been a journey for me and I hope it helps others going through the process.

 

 

 


3 Comments

Welcome

by Lavender - 2023-10-18 22:42:28

Although your story might seem unique, many folks here understand it well. I fainted 26 times in six months before a heart monitor finally found my rare ventricular standstill arrhythmia. All of my heart tests were normal. Two of those episodes-the last two-included near death experiences. One happened while seated next to my boyfriend. He didn't even notice that I was unconscious. It was so brief. The last episode was 33 seconds of pause. My boyfriend thought I was choking, and pounded on my back-restarting my heart. Probably what your mom did by dropping you a short distance. 
 

Six specialists couldn't determine the cause of my fainting before the thirty day monitoring finally captured it. The ER dr said if he hadn't seen the print out, he wouldn't believe my heart had paused. 
 

It took me seven months to start feeling better after my CRT-P was inserted (Boston Scientific). No more episodes of fainting in the two years eight months since I received it. 

Sleeping on the pacemaker (left) side took a long time to achieve-maybe all of two years. I can do it now. For short periods. Then I feel uncomfortable. Prior to getting comfortable, I propped a lot of pillows around me.

You sound very well adjusted and well informed. Thank you for sharing your experience. 

 

DELTOID

by piglet22 - 2023-10-19 06:45:23

Your experience is not uncommon.

You know something is wrong, but you have to persuade the others and that can be a real struggle.

It can be worse if the medics you see don't quite believe you. They look at what's in front of them and what's going on there and then and some bad decisions can be made.

I worked a lot on problems that were unpredictable, short-lived and had no obvious cause.

What I learnt was that tracking them down took a long time and involved constant observation. It quite often involved using data loggers which work like loop recorders, the difference being they don't overwrite the unhelpful data.

Medics fall into two groups. The ones who are prepared to listen and the ones who won't. There's a sub-group that doesn't like any sort of patient self-investigation - Google - or data collected by patients.

My advice to anyone would be to get to know your "normal" and for cardiac stuff, that might mean doing blood pressure, pulse, oxygen and keeping records. You might want to include something more sophisticated like an ECG application.

It’s now part of my daily routine.

One of my relatives was getting 20 second blackouts with no palpable pulse. It took him a change of specialist to get his pacemaker. God only knows what would have happened if he hadn't badgered away.

Your new pacemaker is a truly remarkable device and will probably be with you, not the same one, for life. See it as your lifesaver and little friend.

Good luck.

Pacemaker

by skigrl3 - 2023-10-19 11:10:42

Agree with the other posts. I see some similarities here. I am 1 year 5 months in with my pacemaker and I still it weird, in a good way of course that I no longer faint - after a lifetime of it. I have fainted in some memorable places over the years- a few-  the NYC subway, while skiing Mineral Basin UT and Mt Bachelor OR, also on the street in front of an ambulance (yes, really!) Good luck adjusting. Once you are settled in you will find that your pm works quite nicely.

You know you're wired when...

You have an excuse for being a couch potato.

Member Quotes

My eight year old son had a pacemaker since he was 6 months old. He does very well, plays soccer, baseball, and rides his bike. I am so glad he is not ashamed of his pacemaker. He will proudly show his "battery" to anyone.