Here at Heart Sisters World Headquarters, I’m often contacted by readers with impertinent questions like: “Why don’t you ever write about ______?” (insert your own specific diagnosis here). One in particular was a 2015 reader question that read: “Why don’t you ever write about congenital heart defects?” On that particular morning, I was feeling tired, sick and “grumpy” (as our little Everly Rose calls every feeling she has that’s not happy). I wanted to snap back at this reader that I’m not running the Encyclopedia Britannica here…

But in a remarkable coincidence – and luckily before I had a chance to snap – on that very day, another reader named Aletha happened to share with me her own amazing story as an adult living with a heart condition she’d had since birth. That weekend, I ran my first ever blog post about this cardiac condition, called “ When babies with congenital heart defects grow up“.

And recently, a similar reader contact reminded me that I’ve never covered the topic of cardiac pacemakers – until now.

There are many credible sources of clinical information about what cardiac pacemakers do and who needs them (the Ottawa Heart Institute, for example, has a solid patient-friendly guide).

Basically, a pacemaker is a small device that’s placed in the chest or abdomen to help control abnormal heart rhythms by usin g steady elec trical pulses to prompt the heart to beat at a normal rate again. Someti mes, this little device is a dual-purpose lifesaver, functioning as both pacemaker and ICD ( implantable cardioverter defibrillator ). This cardiac resynchronization therapy (CRT) can be delivered as a pacemaker only, or in combination with an ICD. An ICD on its own continually monitors heart rhythm and can send low- or high-energy electrical pulses to correct an abnormal heart rhythm that might otherwise result in sudden cardiac arrest.

To learn what real heart patients are saying about real life with a real pacemaker, there’s no more practical Q&A overview than what is freely available in patient communities. Here’s just a sampling from a number of “pacers” themselves:

Extreme weakness after pacemaker implant:

Q: I am a 59-year old female, had a pacemaker placement nine weeks ago. I am still so weak, it’s all I can do to do basic tasks. I feel like I should be feeling better by now. I will see the cardiologist on Friday hoping they can give me some answers. They keep saying they are going to adjust the settings, but they have not done so. I am very disappointed in the progress that I have made in nine weeks. I am wondering have any of you pacers experienced weakness and fatigue this? Please tell me it gets better from here.

Hello pacers! A little Q&A about your pacemaker

• That means it’s working the way it is programmed to. It does NOT mean it has been programmed to work in a way that is optimal for you. Many people do well with out-of-the-box settings, but others might need several adjustments before the settings are right.
• It’s also possible that your settings are ideal and something else is going on. Either way, the problem should be addressed. The more specific questions you ask, the more information you get, and frankly, the more respect you get.
• Your problem is not exactly rare. Nor is it rare to have one’s complaints dismissed. The one that ticks me off the most is: “Your pacemaker is working fine.”
• I am your age and got my first pacemaker four years ago. Unfortunately, it took me 14 months to feel really well. Now I feel great, but that first year was a bear. But please don’t be discouraged by my story! I was improving all the time, but had hoped for something more dramatic, I guess! I feel wonderful now, but I hated those early months.