Pacemaker or not

waiting

by Tracey_E - 2024-10-27 12:10:01

I'm no doctor but my best guess is you are in that in between time- don't desperately need it yet, but don't not need it. Heart block almost always progresses so you want to pace before you get to the point where you badly need it. The body will compensate and deal with it up to a point, then it starts to take a toll. It sounds like that's where you are now, it's not taking a toll yet. 

Not quite the same, but I have a bad lead. We knew it was old and likely to fail more than a year ago, it started causing minor issues a couple of months ago. I'm having it fixed in December because that is my slow season for work and I'll have the holidays to recover. It needs to be done but it's not urgent, so it can wait until it's convenient.

OTOH, when I got my first pacer, my doctors wanted to put it off because of my age. One day my heart rate tanked and I ended up in emergency surgery. Definitely not the easy way to do it, and if I'd had a doctor like yours I never would have been in that situation. That was 30 years ago, different times and it was more common to wait because the technology was newer and they didn't have patients paced for a lifetime. Now, we know patients are thriving after decades of pacing so they are more likely to pace early. This is a good thing. 

When in doubt, you can always take the ILR results and get a second opinion.

My story

by Lavender - 2024-10-27 18:02:19

In 2019, I had routine laparoscopic gallbladder surgery. While being brought out of the anesthesia, my heart stopped. It recovered on its own and I spent the night in the ICU.  I was told then that one day I would need a pacemaker. But no one offered that then. 

Nine months later, I got up off the couch to head to bed and immediately passed out, hitting a glass topped end table. It broke but I was ok. I called the dr emergency number and he said not to be concerned, it was probably due to prednisone they started that day for something else. 

Thereafter I passed out 25 times over the next six months. Always brief, no warning and thankfully I was not driving and never hurt. I pressed six specialists for an answer. I passed a stress test, and all other tests. 
One day, alone, I awoke on the floor of a store's back aisle. No one was nearby. That made me stop driving. It also infuriated me and I got the neurologist to insist that my pcp order a thirty day monitor. 

Ten days into that, it caught my sneaky rare arrythmia-ventricular standstill. I had dropped dead on my livingroom floor, narrowly missing smashing my skull on a raised stone fireplace hearth. I only survived the 33 second pause because my boyfriend thought my death rattle was choking. He pounded on my back-restarting my heart. 

I was ordered to the emergency room and left the hospital a couple days later with a cardiac resynchronization therapy pacemaker. That was in 2021. 

I would have much rather been fitted with a pacemaker in 2019 after the gallbladder surgery. I would have been spared the crippling fear of fainting all over the place, the multiple tests and visits for consultation to six specialists who passed me around trying to figure out why I was fainting. I had developed fear of going anywhere which lasted a good while after I got the CRT-P. 
I was told that insurance wouldn't have paid for a pacemaker if it wasn't proven that I needed it. 

You already know you will need one. Why wait until it gets worse? This stuff is progressive. 
I would probably be like you and not want to shake up the status quo at this point. When I was told in 2019 that one day I would need a pacemaker, I protested that was for old people, not me. Lol then the nurse told me that I WAS old. Even so, babies get them. 😉

Yes or no

by piglet22 - 2024-10-28 05:35:05

Hello 

My own experience was one of waiting after early symptoms started to appear. What I know now was pre-syncope, the dizziness, collapses were the warning signs.

I had the problem of getting my GP to actually take it seriously and I believe that put me at risk unnecessarily

 Lavenders experiences highlight the dangers. The sudden collapses can come with zero warning. I could get up, sometimes feel lightheaded and recover. Other times hitting the deck. It could happen up a ladder or at the top of the stairs.

It came as a relief when a consultant said I had complete heart block and a pacemaker would fix it. At least someone was taking notice. And he said it was urgent. Quite different to the GP.

The other thing I found out early on was that the condition doesn't cure itself. Mobitz type 2 with some pacing eventually ended up as totally device dependant

 It's important to say that I don't feel any different now to nearly 20 years ago when the first device was fitted, but I feel a lot better than I did before I got it.

If the signs are there, there's nothing to be gained by delaying things. I don't know anyone who had a device fitted who had it removed as unnecessary or regrets going ahead.

I feel a lot more secure with than without

Prognosis of untreated complete heart block

by Selwyn - 2024-10-28 11:33:36

Hello RLFS,

Complete heart block can be fatal. 

( see Acta Med Scand
. 1976;200(6):457-63.
Prognosis of patients with complete heart block or arrhythmic syncope who were not treated with artificial pacemakers. A long-term follow-up study of 101 patients) . 68% survival in 12 months. 37% in 5 years.

Personally, I did CPR on someone who arrested in front of me ( actually I was phoning for an ambulance when her husband screamed)  with complete heart block. She survived to get a pacemaker, and myself a bottle of wine.

You don't say how long the heart block lasts for. A long time has more risk than a few seconds. 

My pacemaker was fitted for asystole ( Heart stop) lasting 12 seconds ONLY at night. I never had any symptoms.  I carried my own defibrillator around until I had my pacemaker fitted - all of 2 days after getting the report. 

Death carries a 100% mortality. A pacemaker is almost 100% survival.

Selwyn

by Lavender - 2024-10-28 17:25:21

Selwyn, your words were so beautiful that my eyes burned with tears. I am thankful for my device, though I resented getting it and didn't want it. With the statics you mentioned, I would be dead without it. 🥲