Everything You Weren't Told About Getting a Pacemaker

Being a healthcare professional myself, I did a fair amount of research before deciding to get my pacemaker. I read all of the info available on the device itself - the manufacturer site was adequate and easy to navigate, the patient info side was too simple/basic, I found the physician side much more informative. I still have questions about the programming, which will get asked at my first pacemaker check, the rate responsive seems overly sensitive and I am not used to having a heart rate in the 80s when sitting around using the computer. Walking a couple blocks took the rate up the high 120s and it didn't feel comfortable, but it appears that the system will adjust, I certainly hope so.

In addition to the device manufacturer site, and the other big device maker sites, there is a patient site for those with pacers and ICDs that is helpful. Even there I didn't find everything I was looking for, but it is rich with content on lots of topics.

So what didn't I find? Here's a list:

• Before surgery - skin prep with disinfecting soap (it's red, doesn't lather, and anyone who ever worked in a hospital will know the brand). Instructions were to take 3 showers in the 48hrs leading up to surgery. Found out the hard way that I am allergic. First shower left me with exceptionally dry skin and mild itching on my chest. Second shower - I could not keep the soap on for more than 15 seconds. Major itching. Very uncomfortable. There was no 3rd application. Strange that this happened as I did work in a hospital for 10 years and didn't have a problem washing my hands with the product. But I have developed allergies to other things since I last used it. 
• Pacemaker implant day - you cannot eat or have anything to drink after midnight the evening before surgery. Pretty standard instructions, and easy for me since I am not a night owl. I do however, get very thirsty during the night and did have water at 3 and 6 am (this was not a problem for me, but check with your doctor before doing this). I was originally supposed to report at 7 am, but was called early and told come in at 10 am instead, once there I was told emergency cases bumped me to 12:45 pm. Great. I was already getting hypoglycemic at 10, having last eaten at 6pm the night before, and I let them know. Fortunately, I got 4 oz of cranberry juice to tide me over :). I didn't get taken back into the surgical prep room until 1 pm. After my procedure, they checked my blood glucose - 53 at 4:30 pm. Lesson learned...eat a high protein, high fat meal at 10 pm next time I have to have surgery. 
• Placement - customized somewhat for everyone depending on body shape/size/device features and whether you are right- or left- handed. The typical placement is on the left side for most adults. That's where mine is, it is a bit closer to the center because I have musculoskeletal issues with my left shoulder and upper back. Reality has intruded and it is exactly where my bra strap goes. There is protector and I will try that out, so far no problems. It does make you realize that your non-dominant arm is used a lot more than you think. It's a big irritation that I cannot stretch that side for 4 weeks - 4 weeks - because you cannot raise the arm on the side where the pacer is above your shoulder for that long in order not to displace the leads.
• Skin irritation from electrode patches - I should have remembered this from the last time I was on telemetry. Even though it was less than 36hrs, I still developed redness and itching where the patches were placed. Also irritation from the lead wires and box against my skin, you could see the outline for days. Benadryl and hydrocortisone cream helped, but it was very itchy. The skin prep also may have contributed. 
• Discomfort - this is actually good news, it wasn't painful per se, just uncomfortable/discomfort that was managed well with extra strength acetaminophen alternating with ibuprofen. Just remember to take it around the clock and not wait for pain. Everyone has different pain thresholds and how they react so my experience will not be yours. Yes, it was painful during the procedure. And if I moved the arm or my body the wrong way I get a shot of pain. But not nearly as bad as what I read in some posts on the patient PM club site. Personally, the pain from my muscle spasms and neck arthritis when it flares is far worse.
• Restrictions on lifting/movement - ok, since when is anything lighter than 5 lbs? This is the worst. I live alone most of the time because hubby is retired and work for me is in a different state. Four weeks of not lifting?? How am I going to carry my work computer and backpack/briefcase from the apartment to the office? No driving either, this is going to be very interesting. I'm working from home this week and next, so 2 1/2 of the 4 weeks are covered.

Enough for today!

People's Reactions are Priceless

I had a call today from someone who I hadn't spoke to in about a year - called out of the blue, and of course they casually asked "how's it going?" 

Being truthful, I explained that I was home recovering from a procedure, and mentioned that I had a pacemaker implanted last week. Silence...for about 5 seconds....then profuse apologies for disturbing me. If it was a disturbance, I would not have answered the call, especially since caller ID told me who was on the other end.

It's interesting to see how people handle the news. The team at work of course knew in advance, because I had to transition some projects over to them for the time I am away. That did not stop some from emailing the day after the procedure to ask "can you take a quick call" to lots of well wishes to being sent a basket of brownies and cookies. 

Or silence and not knowing what to say. Hey, having a pacemaker is not a death sentence. Or a sign that I am ready to retire (I wish). Actually, I am feeling pretty darn good. I just can't move as fast as I would like, and my energy level isn't where I want it to be just now. The device and I are getting used to each other, it is rate-adaptive (closed loop sensing) and learning how to deliver the right amount of heart rate. And I'm learning not to react. It still seems like my heart is beating way too fast, especially when I am winding down to get to sleep and I feel like my heart is jumping out of my chest - but the rate is 85 or 80. I guess I got used to being at 60 for too long :).

Back to people's reactions. Even though pacemakers are not that rare, almost everyone mentions those they know who have one are elderly, and set expectations accordingly - yes the majority are placed in those over 65. But pacemakers are placed in children, young adults, and those my age (over 45 but nowhere near Social Security). 

So, what is it like? Well, I can't feel much of anything, which is good - if there was pain, then a lead might have moved out of place or the incision was developing an infection. I'm enjoying the warm hands and sleeping better. Yes, there will be a scar and a bump on my upper chest. Big deal. And the battery/generator will need to be replaced in about 10 years...may I be retired and living the good life by then.

  

 

It's Day 3 of Pacemaker Life

My hands are warm! I know, you are thinking, this is a revelation why? Because they are always cold. Hopefully now it will be "were always cold."

If you ask my husband, for at least 21 years I've had ice-cold hands and feet, and would be under 3 blankets in the middle of summer. It was just the way I was - maybe thyroid was too low, or poor circulation, or just vasoconstricted, who knew.

When I woke up in my hospital bed the morning after having a pacemaker put in, I realized two things: I had warm hands, and I could not tell when the device was working. I was surprised when the nurse pointed out on the monitor that I was being paced - the monitor being on the left side where it wasn't easy for me to see - and that it was pacing while I was in bed doing nothing. And I wasn't cold... I was comfortable under the sheet and one blanket. 

No one ever told me that one of the benefits of having a pacer was warm hands! This is BIG. All the pacer was supposed to do for me was to be an "insurance policy" to keep my heart rate over 50 bpm so I would be less likely to faint without warning - the reason the device was put in.

My story (short version): two significant syncopal events with bradycardia in two years, on top of blood pressure that has always been on the low end of normal and slowly dropping over the past few years. I had fainted several times before this, going back as far as 8th grade, and it had been attributed to things like fasting, sitting still for too long, getting up too quickly, etc.

I also had an ablation for an SVT in 2011- my introduction to emergency departments, advanced cardiac care, electrophysiology, and the other side of medicine. I'm a healthcare professional and have always been on the provider side, as a clinical pharmacist, and not on the receiving end. My appreciation is very high for those who have cared for me and the insights are invaluable to me in my current role.

Back to getting a pacer. April 27, 2016 at a world-famous hospital in Boston (one of the few times I've been in the right place at the right time) and I get to the EP area and it is crowded. Very crowded. So crowded people are standing around waiting to be checked in - or by the wheelchairs their family members are in. My husband almost left me at the door, but he quickly came to his senses and mellowed out. It became clear pretty quickly that my case was not going to be on time, which I expected, as I got a call the day before to let me know my 7 am case had been pushed back to 10 am, and once there it became 12:45 pm. I finally got called around 1:15 pm, said bye to the husband (who immediately left for lunch at MickeyDs) and got prepped and into the procedure room by 2 pm. 

Stop reading here if you are squeamish.

Pacemakers are put in while you are under conscious sedation (unless you are having an abdominal placement - rare in adults). CONSCIOUS sedation, meaning you are awake and supposedly not feeling a thing or not caring if you do because of the drugs used. Ha. I was curious to follow along and I saw a lot more than I ever expected. In contrast, I remember almost nothing about my ablation, other than looking at all the monitors and equipment in the room and thinking it looked a lot like mission control for the space program before they put me out. This time was much different. Yes, I received midazolam and fentanyl. And lidocaine at the site. But I did have to ask a few times for more of each - it hurt when they were cutting into the skin of my chest to make the pocket for the generator. Especially when my EP directed the fellow to make the incision deeper! Ouch. Can't wait til this dressing comes off so I can see the scar. 

Once that was done, the fun started with lead wire insertion. Apparently, my heart is small (I can hear my husband laughing now) and one of the leads was difficult to place - it kept bumping up against a valve. Yes I heard you guys talking!!! And I felt the pushing, almost like pounding. But maybe that was just the leads being torqued into place. The only thing I don't remember much of was going from the EP lab to the cardiac step down unit, other than the transfer device, a very cool net that got me from the stretcher to the bed.

I received a dual chamber pacemaker with a closed loop sensing system that automatically registers when SVR is too low and kicks heart rate up to compensate. A very smart device, and customized to my situation. The overnight stay was fine, the care was great on the unit, pain or discomfort was non-existent until the buvipicaine wore off (thank you for adding this to the site!) but manageable with acetaminophen and ibuprofen. I found out that the pacer was used 31% of the time since placement when it was interrogated (yes, really) the next morning. Which was a lot more than I was expecting. 

Since then, my rate has been kept in the 70s or 80s - way higher than what I was running before placement. I have a fitness tracker that showed my rates dropping to the low 50s at night and 65-70 during the day. With the occasional excursion into the 40s (with symptoms so I could get flat and avoid fainting) or spikes to the 130-140s with exercise.

My follow up is in a couple weeks and I will get the home monitoring system. So far, it's all good. I just get reminded every so often when I move exactly how much my left arm and pec gets used during normal activities - it is more than what you think. 

So, what is your experience with being paced?