Hello pacers! A little Q&A about your pacemaker

by Carolyn Thomas  ♥  @HeartSisters

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 using steady electrical pulses to prompt the heart to beat at a normal rate again. Sometimes, 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 from patients themselves.  Here’s just a sampling from a number of “pacers“:

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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 manage basic tasks. I feel like I should be feeling better by now. I will see the cardiologist on Friday, hoping I can get 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.

Answers from pacemaker patients:

• That means your pacemaker is 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.
• Here’s what I learned when I knew my pacemaker wasn’t right but could get no one to listen:
  • 1. Be proactive. Get a copy of your interrogation report. Study it. Learn what your settings are and what they mean.
  • 2. Go back and ask for changes. Very simple changes like raising or lowering the base rate can make a huge difference to how you feel, as can a change in the response rate. Put your requests for change in the form of a question, e.g. “Do you think if we try raising my base rate from 60 to 65 I might feel more energetic?”
  • 3. If they truly don’t seem willing or able to address your issues, go somewhere else. I found out that if they can’t or don’t help me in a few visits, continuing to go back won’t help either them or me, and will only cause frustration for both of us. If you have few choices in electrophysiologists (the kind of cardiologist you should be seeing), go to a major medical teaching hospital, even if you have to travel. It’s your life. Don’t settle for feeling rotten.

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Sex after a pacemaker:

Q:  I had my pacemaker surgery done recently. Since then I have been very fearful of resuming an intimate relationship with my husband. He has been wonderful and so understanding, and I have always wanted to ask my doctor, but just can’t seem to bring up the subject. Does anyone have the answer? 

Answers from pacemaker patients:

• There is no reason you can’t have a normal sex life after a pacemaker. Relax, it is absolutely fine! And it’s so important! I have had a PM for 20 years and had several battery changes. It never interfered with sex. You just need to wait two months to heal.
• The stock answer is if you are able to walk up a flight of stairs, you can have sex. Also, you can take things nice and easy.
• I can tell you it was a lot safer for me to enjoy sex after the implant than before! I only waited a few weeks. I did not use my left arm a lot for anything and followed the instructions about not raising my arm above my head. It was not a problem keeping my arm at the recommended height or below. It was a bit weird at first as my husband touched the incision area…. didn’t hurt, it was just a new part of me.
• After I got my pacemaker/defibrillator, I found I was much more comfortable having sex with my husband. I felt more confident that he wouldn’t have to call 911 for me so I’m able to relax and enjoy myself!
• We were supposed to WAIT???  🙂   If this is your first pacemaker, don’t swing on any trapezes and you should be fine. The pacemaker won’t make any difference at all. Have a great time!

Waking up in the middle of the night:

Q:  I have just had my pacemaker surgery a few weeks ago, age 39. I’ve been waking up at night very alert, and not sure why. Before my surgery, I was told that my heart was stopping for as long as 14 seconds in my sleep. Why is this happening?

Answers from pacemaker patients:

• At your first follow-up appointment, they will check that your pacemaker is working okay, and may adjust settings. You should tell them about feeling alert at night. if you feel tired during the day, or find that you are short of breath at any time, they need to know this and may adjust settings.
• It may be just because your heart is now working better.  There are several things they can adjust: from the minimum number of beats per minute (BPM) or the time delay between when the device triggers one chamber of the heart after the other. Think of it as fine tuning.
• Tell your doctor about waking up at night, and if you can, what time you wake up. It is possible that if something is going on, it is being recorded. (Your pacemaker doesn’t record everything – only what it is programmed to).
• Younger people like you (age 39) often are making more activity demands on their pacemaker than someone older and more sedentary. Sometimes younger people can benefit from having their settings tweaked so that they get optimal performance.

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Hot tubs:

Q: Is it okay to use a jacuzzi or hot tub if I have a pacemaker?

Answers from pacemaker patients:

• Discuss with your EP (electrophysiologist) first. If he/she says no, it’s a NO.
• It may not bother the pacemaker, but you have to be careful because of the heat and what it might do because of your heart issues. You also don’t say how long you’ve had the pacemaker and if the wound has completely healed. Obviously you don’t want to get into hot water with a wound that hasn’t healed.
• For me, my blood pressure drops and my heart rate goes up, so I’m careful to monitor how I’m feeling, whether or not I get in and if I do, how long I stay in. Otherwise enjoy! Nothing better than a good soak!
• Every morning, I go out to our hot tub and watch the sun come up. Then at about 9 p.m. I spend a while in it before I go to bed.
• Depending upon your heart problems and medication you are taking, the heat from the spa could exacerbate your problems. So you want to be really careful.

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Heart rate too high:

Q:  I had my pacemaker surgery last week for Sick Sinus Syndrome and Chronotropic Intolerance. I’m 44. I love to run, so I was interested to see what the rate would be when I went for a walk (I’m not allowed to run yet). I started out slowly and felt my heart beating rapidly. I checked the heart rate zones after the walk and the average was 145 with a maximum of 175. I wasn’t walking fast and didn’t even get a sweat up. I usually get these results from a general run with hills. Isn’t a pacemaker supposed to make my heart rate work in the right zones when exercising?

Answers from pacemaker patients:

• “Normal” may feel fast for a while. We get used to the slower rate, then when we have a normal rate again it feels too fast. It’s also common to take a few tries to get the settings adjusted correctly. No two of us are alike, so they’re not one-size-fits-all. Don’t be shy about telling your doctors that it’s not right.
• Yes, it IS supposed to make your heart rate work in the right zones when you exercise. In fact, it likely WILL after you have had some minor adjustments made to the programmable settings which can be adjusted ranging from LOW (responds to minor activity) to HIGH (responds only to vigorous body movements and exertion)
• It sounds as though your activity settings are too sensitive. It is an easy fix to have them altered . There are other adjustments which can change the rate at which your heart rate increases and the rate at which it falls when you stop exercising. You need to be aware however that the same settings may not last you for life. Sick Sinus Syndrome can change over time when your sinus node may become more lazy. Again, an adjustment to the settings will be the answer.
• Don’t get too caught up in the heart rate charts and zones. We don’t necessarily fit into them anymore. If you feel good, then your rate is good. I don’t even track anymore, I go strictly by how I feel. If I can talk but not sing, if I’m working hard and sweating, then it’s all good. Some days that’s 135, other days it’s 165.

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Hiking with a backpack:

Q:  I’m surprised how close to the skin surface my pacemaker is. I’m planning a hiking trip soon. Have any of you used a heavy backpack, especially on multiple-day trips, and how do you manage the straps pressing painfully against the PM?

Answers from pacemaker patients:

• In a perfect world, you ask the surgeon about choosing a submammary implant site before you get your pacemaker, so they don’t implant it where straps would get in the way! Barring that, you go shopping and test things out because everyone is different. It may not even be a problem if the straps don’t hit it or don’t bother you.
• Some have had luck with extra padding on the strap, but I don’t think that’s a good option if your pack is heavy and/or you will be going long distances. Shop at a specialty outdoor store where staff are knowledgeable. Don’t bat an eye at asking to load up a pack and wear it around the store, where you can return it if it doesn’t work.
• I got my first pacemaker 15 years ago (was never allowed any sport before that). I have a submammary implant so backpacks aren’t an issue for me. I don’t know why more surgeons don’t take into account our lifestyle when they do the placement.
• Would one of those bags that goes over one shoulder and crosses your body be big enough? If not, modifying a standard pack it is probably your best bet. I don’t know that padding will help because it’s the pressure that will bother you.
• I hiked in Patagonia last year wearing a daypack. I received terrific assistance from outfitter store staff who helped me find a pack where the straps didn’t sit on my pacemaker. I bought a pack with a hydration system. I just had to remove the magnet that held the mouthpiece because it was too close to the pacemaker.
• I just returned from five days of hiking, and had no trouble with the pacemaker being impinged by my 55-lb. backpack. I did however place foam makeup pads above and beside the PM site, and also fastened them to my strap. I also loosened the sternum connection so that the strap did not creep inwards over time. Having a pacemaker should not keep anyone from enjoying the lifestyle they love. I’m as active now as I was pre-pacemaker!

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Electric toothbrushes:

Q:  On the directions for my new electric toothbrush, it said check with your cardiologist to see if it is safe to use if you have a pacemaker. Do any of you with pacemakers use an electric toothbrush?

Answers from pacemaker patients:

• Yes, I have been using my electric toothbrush with no problems. I did mention I was buying one to my dentist and he didn’t say it was a problem
• I have an electric toothbrush that’s older than my pacemaker. I’ve used it since day 1 with no ill effects. Of course, I only use it on my teeth–never the pacemaker!
• Here’s a list I found from the American Heart Association called Devices That May Interfere with Pacemakers (electric toothbrushes are not on this list!)
• I suspect that this toothbrush warning is a CYA posted by lawyers, not medical people. Today’s pacemakers are very well-shielded. The fact is, it takes a very, very strong electromagnet to have an effect on our devices.
• If you’re concerned, as an extra precaution to be absolutely safe, you only need to keep the electric toothbrush at least 6 inches away from your device.

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Lifting heavy weights:

Q:   Pacemaker/ICD implanted six weeks ago. My job requires me to lift heavy weights, up to 40 pounds, throughout the day. Do I have to change jobs?

Answer from Doug Rachac, my go-to expert on such matters (14 years working for the medical device company Medtronic, and now a patient with an implanted cardiac device himself!) Doug has also created several excellent patient-friendly YouTube videos about cardiac devices like pacemakers or defibrillators; here’s a good one about pacemakers specifically called Pacemakers 101). Meanwhile, here’s what Doug told me about lifting heavy weights:

“Of course, every patient is different, they should consult with their doctor first, but the general directions doctors give is that patients should not lift more than 10 pounds with their implant side arm for 6-8 weeks.

“For reference, a gallon of milk weighs 8.5 pounds. After that 6-8 week period patients can slowly return to their normal routine so that by the 3-month mark, they are back to normal lifting. For some people, that means body building, weight lifting, etc.  So, in theory, a person might be able to start lifting lighter weights at 6-8 weeks, and be back to normal within  three months. I made a video about this topic a few months back that might be helpful.  In the video, I also explain a little about why it’s important to take a break to heal. It has to do with scar tissue forming around the leads securing it into the heart wall.

“On the flip side, I could also introduce you to a patient named Frank who has an ICD implanted. He returned to work lifting heavy objects, and the motion caused his device leads to work themselves out of the body. After a surgical revision, and it happening again (with another revision), he decided he had to leave his job because he couldn’t lift those objects anymore. His situation is not the norm.  So…. yes, you can return to work and will be able to lift heavy objects again, but there is a small chance that the repetitive motion could cause problems. We just won’t know if that will happen until it does. I hope that helps!”

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Thank you to my blog readers, to Doug Rachac, and the heart patient members of both the Pacemaker Club and WomenHeart’s All About Arrhythmias online communities for sharing their personal insights and experiences of living with a pacemaker.

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NOTE FROM CAROLYN: I wrote more about what it’s like to learn to adapt to cardiac procedures (like getting a pacemaker) in my book A Woman’s Guide to Living with Heart Disease (Johns Hopkins University Press). You can ask for this book at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from Johns Hopkins University Press (use their code HTWN to save 30% off the list price when you order).

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Q: What tips have you learned about living with a pacemaker?