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 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.

Answers from pacemaker patients:

  • 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.
  • 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.

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.

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 ours and watch the sun come up. Then 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.

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.

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!

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.

 

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 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!”

.

Thank you to my blog readers, and 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.

.

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, 2017). 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 20% off the list price when you order).

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

110 thoughts on “Hello pacers! A little Q&A about your pacemaker

      1. Take a photo of the area that the pacemaker appears through your skin. If I take my shirt off I can clearly see the imprint of my pacemaker just near my left shoulder. That’s what I mean.

        Like

        1. I’m not a physician, Barry, but I can tell you that if you lined up 10 different people with implanted pacemakers and took pictures of each chest, you’d likely see 10 completely different photos, often depending on how deeply the surgeon has implanted the device into its “pocket” (either under the skin or under the chest muscle) and also if the patient tends to be thin and bony, or more “soft and fleshy”. There are advantages and disadvantages to either (most common concerns are around future replacement procedures – easier for under the skin).

          I’ve seen some where the corners of the implanted cardiac device are clearly outlined under the skin, and others where only the surgical incision scar remains visible. One of my readers joked that he was thinking of having another “lump” implanted on the other side of his chest so he’d have two matching bumps!)

          Both the visible and the less-visible may be just fine – but if yours bothers you, or if the appearance of the scar starts to change, see your doctor.

          How the chest looks in the early days/weeks post-op is rarely how it looks much later after lots of healing. For example, here’s a series of photos taken by one young pacemaker patient from her “before” surgery to “five months post-op”. (Scroll down the page to the section called “Pain and the Healing Process”).

          Good luck to you…

          Like

          1. Dear Carolyn, I was replying to ‘Linda & Clayton Vardy’s question. I was trying to help them. I was NOT asking a question but trying to help. I shall let it ride now

            Liked by 1 person

            1. Oh, well that makes sense now! 🙂

              There are two ways to leave a comment: one is to leave a general comment about a specific article, and the other is to reply to another reader’s comment (by clicking the REPLY link directly under each reader comment). Because you clicked on the ‘general link, your comment didn’t show up under the Vardys specific comment so it didn’t show who you were addressing!

              Thanks for being helpful…

              Like

  1. I can’t find where to ask a question. I had a pacemaker implanted 7 weeks ago. it feels like it’s been placed too close to my arm. My left arm feels like it’s butting up against it when I reach across my chest. I can’t reach my right shoulder as the PM is blocking my movement. Is this normal?

    Liked by 1 person

    1. Hello Linda and Clayton – I’m not a physician so of course cannot comment specifically on what’s causing this odd feeling you’re experiencing. I can tell you generally that usually by the third week post-op, most people’s symptoms ease up as the incision heals and they get used to this little object in their chest. Some sensations that feel very odd at the beginning seem less so as time goes on and people simply adapt to the new sensations.

      But not being physically able to reach over to touch your right shoulder does NOT sound like a “normal” occurrence (I’m guess that you were always able to do this pre-pacemaker?)

      Go get this checked out by your physician, and state loud and clear when describing exactly how this placement is affecting your day-to-day life. In other words, don’t just say, “my pacemaker feels too close to my arm” (which invites them to respond, “No, it’s not too close to your arm, or “You’ll just have to get used to it”).

      Instead, list the very specific movements or activities that this “feeling” makes too difficult for you to do anymore (like your example of “can’t reach my right shoulder”).

      Good luck to you…

      Like

      1. Thanks Carolyn. I actually go to the pacemaker clinic tomorrow.

        It’s very helpful to know that this is NOT normal. I have been searching the internet to see if anyone else has had this issue and hadn’t been able to find anything and then I found your website.

        I really appreciate your suggestion to have some specific examples. I have a number including finding it very difficult to put in my right earring, putting my palm up to my mouth to take my pills and I certainly wouldn’t be able to put sunscreen on my shoulder or upper arm. Thanks so much.

        Linda

        Liked by 1 person

        1. Hi again Linda! That suggestion comes from a Harvard researcher named Dr. Catherine Kreatsoulas who studies how women communicate – but very specifically, how women communicate in the E.R. when they have cardiac symptoms. One of the interesting things she repeatedly observed is that the type of language women use to describe how symptoms are bothering them tends to minimize the problem.

          Here’s how she might recommend effectively communicating symptoms that should not be minimized; she tells the story of a woman with severe cardiac symptoms including crushing fatigue that was so bad she went to the E.R. for help. After the doc told her she was probably just depressed and should consider taking an anti-depressant drugs, she asked him:

          “Will that drug help me carry my laundry basket up the stairs? Because right now, I’m unable to lift it anymore…”

          That’s how we should be describing our medical issues. How does this problem affect my quality of life? It’s a small but important way to encourage women to stop minimizing our medical issues. Here’s more about Dr. Kreasoulas’s work

          Best of luck to you at your pacemaker checkup!

          Like

          1. Hi Carolyn,

            Sorry to be slow in getting back to you. Life has been busy.

            I went to the pacemaker clinic last Wednesday and last Thursday, I had a phone appointment with my Cardiologist.  My pacemaker is working well (firing 17% of the time) and I’ve healed up well. 

            When I told the technician at the clinic about the problem I’ve been having with the range of motion of my left arm when I reach across in front of my body, she said that I’m small and so there isn’t a lot of room  She said that the pacemaker is very close to my arm but that the surgeon would have placed it in the best place.  Since the pacemaker is working well and I’ve healed well, she doubted they would want to open it up again and risk infection. 

            I told her that I had searched the internet and couldn’t find anyone who had this problem and had even found your pacemaker blog and the information I received that this is not normal.  She said that it’s early days and I will get used to it! You can imagine that I wasn’t very happy about her response.
             
            My cardiologist was pleased with the results and happy that the pacemaker dealt with the angina problem when walking up hills as well as the pause between beats which means that I don’t need to go on any other medication or have an angiogram!  YEAH! 

            When I told him about my arm motion problem, he said that there is likely still some swelling and so the problem could get better with time.  However, if it doesn’t and I reach the point that I want to have the problem fixed, which would mean surgery again, I was to call him.

            I’m still worried that it will continue to be a problem; but, I guess I just need to be patient! At least my cardiologist, who is not the one who did my pacemaker surgery, is willing to take things further if need be.

            Thanks for all your help and advice.

            Sincerely,
            Linda

            Liked by 1 person

            1. Thanks a lot for this update, Linda! Sounds like you experienced a wide range of varied responses, from “You’ll get used to it” to your cardiologist’s more accepting “Call me if you’d like to have this problem fixed!” message.

              The suggestion that the pacemaker issue could still involve some swelling and may improve over time makes sense. It is true that the human body can get used to a remarkable array of things – even quite awful things – but only you can decide if this affects your quality of life. If it continues or gets worse, it’s good to know that your cardiologist appears open to further discussion about risks and benefits.

              Meanwhile, as you wisely say, try to stay patient and monitor how it’s healing up. Best of luck to you.

              Take care and stay safe…♥

              Like

Your opinion matters. What do you think?

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s