Hello pacers! A little Q&A about your pacemaker

28 Jan

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 online 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.

 

Thank you to 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.

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

15 Responses to “Hello pacers! A little Q&A about your pacemaker”

  1. Tommieo January 28, 2018 at 12:55 pm #

    It is possible to have MRIs with a pacer, but it requires a specific MRI machine, which more places that do MRIs are using, as well as a tech for your brand of unit to either turn it off and then turn it back on and put back all of your settings, or put your unit into “MRI mode” for six or 12 hours and then it will turn itself back on.

    And for newbies: to keep your incision dry when you get home from the hospital, get Glad Press and Seal. Put a piece over your shoulder and down over your incision. Tape around the edges. The Press and Seal sticks to your skin so less water gets in. Your incision will stay really dry.

    I have a pacemaker/ICD and my window was set entirely too small My ceiling was set at 100-110 bpm. I bought a new tricycle and was riding it home from the bicycle store when the danged thing went off.

    It definitely gets your attention. It also took me a while to figure out what had happened. I wondered if I’d been struck by lightening…. nope, not a cloud in the sky, magnetic force field…. nope, that’s only in science fiction, well, whatever it was I hope it didn’t disrupt the settings on my pa…..OH DARN!!!!

    Now what do I do? The electrophysiologist who put it in told me the chances of the thing going off were about none, so I just put it out of my mind. I don’t remember if I’m supposed to call someone or go into the ER. The electrophysiologist has changed hospitals now, so I can’t call him.

    Called my cardio and told him I was an idiot and forgot what I was supposed to do since the thing wasn’t supposed to fire according to the electrophysiologist, but I felt fine before it went off. A little shaken up now from the ICD doing its thing. he suggested the ER would be the place to go. I was home by then (Hubby came and I took the car home…about 1/4 mile and he took my trike).

    I was hot and sweaty from the trike ride and felt fine, so I took a quick shower and dressed and the danged thing went off again! I had checked my watch and the two shocks were almost exactly one hour apart.

    Good news is that when you go into the ER and tell them your ICD fired twice, you move directly to the front of the line.

    If I hadn’t felt good, I would have gone into the ER immediately, but it was clear to me that the ICD had misfired, and when my unit was interrogated, it was confirmed that it went off merely because my heart rate hit the ceiling my first electrophysiologist had set.

    Now my window has been reset, so no more misfires. My ceiling is higher and my floor is lower. For some unknown reason, it had been set to 75. Now it’s set to 60, and my ceiling is at 180 so I can exercise and not worry about being knocked on my butt for no reason.

    About the only problems I have with it is the seat belt when I’m driving. The stores that sell Austrailian sheepskin accessories sell seatbelt covers that help a lot. Real sheepskin… hide with the fleece left on wears a lot better and longer than the knitted base with the fleece woven in.

    Cross body purses are more comfortable, too. No strap across the pacer, not to mention that I can shop hands free, and my purse is more secure.

    My new electrophysiologist said he can go in and bury my pacemaker deeper if it’s really a problem. I’ll probably have him do that when it’s time for a replacement.

    Liked by 1 person

    • Carolyn Thomas January 28, 2018 at 2:26 pm #

      Thanks for such a wide-ranging and interesting comment here, Tommieo! Everything from post-op wound care to seat belt/purse recommendations – and of course that terrific story about your first ICD shock. BTW, I’m guessing that most of us would not label YOU as the “idiot” for forgetting who to call if your device fired! You had been told (incorrectly) that it was unlikely to do that! I wonder why that first electrophysiologist set your ceiling so inappropriately…

      I’ve heard from my readers that an ICD shock can often be misinterpreted as something else. One woman, for example, told me that she was marching in her town’s local 4th of July parade – she’s a professional clown – when suddenly *BANG!* – she felt as if somebody behind her on the parade route had just thrown a ball at her back, very hard and fast. She whipped around angrily to see who had done such a thing, but all behind her appeared to be just normal parade traffic. A short time later, *BANG!* again – another painful fastball to the centre of her back! It took two balls hitting her back before the penny dropped, and she decided it wasn’t a baseball after all, and it just might be her ICD firing. Off she immediately went to the ER, only to discover how highly entertaining it was for ER staff to see a clown in pancake makeup and full costume wheeled into their treatment bay!

      Re your future surgery to move your device: there must be a fine line between wanting it implanted deep enough so that it’s not uncomfortable because of simple external straps, and not wanting it so deep that recuperation is significantly affected! Best of luck to you, whichever you decide…

      Liked by 1 person

  2. Kim January 28, 2018 at 10:33 am #

    Hello any remarks or words of wisdom for people with coronary artery disease and coronary micro vascular disease? I am dealing with both theses diseases at the same time along with C.R.E.S.T. Syndrome.

    Liked by 1 person

    • Carolyn Thomas January 28, 2018 at 2:06 pm #

      Hello Kim – I have written a number of posts about MVD, as I live with that diagnosis, too. If you do a search for microvascular disease (upper right SEARCH box on this page) it will take you to the appropriate links. At the end of each post is a list of other links on related issues. Good luck to you…

      Like

  3. Anne Coxon January 28, 2018 at 9:39 am #

    My mom had 100% heart block and nearly died on the ED gurney. She received her life saving pacemaker in 1992 and lived another 25 years because of this pacemaker. A life worth living.

    The end of life aspect, however, is what I wish to explain because little is said about what happens.

    My mom developed vascular dementia years after the pacemaker was installed. The pacemaker continued to beat. Turning it off was a suicide mission and illegal. Replacing the battery was considered life support. The difference in her care was signed/dated/witnessed letter written 12 years before her death that detailed her end of life wishes – and that unless she was able to look after herself then she wished to die. Based on that letter, her children approached her cardiologist and it was agreed that her pacemaker battery would not be replaced. With 100% heart block, when the pacemaker beat its last beat, then so would she. The pacemaker was still beating at her time of death.

    When you have a pacemaker or ICD installed, you need to visit your attorney ANNUALLY to review the current case law to ensure your exact, detailed wishes are legally binding. Spell it out in writing that you want your ICD turned off at a measurable point in your life. It has to be a measurable point because the hospital ethics people will argue over the fuzzy wording….and you may well prolong a miserable existence… lost in the life of half alive half dead….not knowing who you are …

    All this needs to happen immediately upon learning that you need a pacemaker because once you have lost your legal authority to make decisions for yourself, you can no longer speak for yourself and your POA cannot do that for you. …unless you have clearly defined your wishes in a measurable way.

    Have that hard talk and then review it annually with your attorney.

    Liked by 2 people

    • Carolyn Thomas January 28, 2018 at 1:19 pm #

      Such important points, Anne! In recent years, this decision to de-activate pacemakers and ICDs has become an increasingly important one. It’s been hamstrung for years by the objections of some physicians who mistakenly view deactivation as they would euthanasia or physician-assisted suicide. It is neither.

      Dr. John Mandrola has written the best-articulated argument in favour of deactivation that I’ve seen. (Interestingly, his wife Dr. Staci Mandrola is a hospice physician, a reality which makes him better-informed about end-of-life issues than many cardiologists might be).

      He writes: “The overwhelming majority of requests for deactivation (my guess is 999/1,000) are to turn off ICD shocks. When a patient with an ICD approaches end of life, it is appropriate to deactivate shocks. This is because shocks are painful and often anxiety provoking. What’s more, and this is too often forgotten, a shock for sudden cardiac arrest prevents the kind of death most people hope for–a painless, quick and peaceful death. A good death.” While he describes pacemaker deactivation requests as “rare”, Dr. John sees pacing as external, “like a respirator or dialysis, which no one argues can be stopped if a patient no longer wants it.” Read his article on this and see what you think. He makes a lot of sense, echoing your last point especially when he writes:

      “We mustn’t force a patient to keep a pacemaker functioning against his or her wishes.”

      Liked by 2 people

  4. Holly Shaltz January 28, 2018 at 6:31 am #

    Not all ICDs are pacemakers in the sense of stimulating the heart to beat. Mine will only pace me out of life-threatening arrhythmias (in addition to the jump-start if my heart stops beating entirely).

    On the living-with side, my ICD (and presumably pacemakers) are a real pain when you need an MRI – you can’t have one! Sure would be nice if manufacturers would make these devices without iron-containing metals. I need MRIs of my head for several different health issues, but all I can do is have CT scans, and those don’t show the detail needed.

    Liked by 2 people

    • Carolyn Thomas January 28, 2018 at 6:47 am #

      Hi Holly – I wonder the same thing: with today’s technology, you’d think that an MRI would be widely available for pacemaker patients (and indeed, in some cases it is – Johns Hopkins University has apparently been doing this safely for some patients). And you’re right: there are pacemakers, there are ICDs, and then are the cardiac resynchronization therapy (CRT) devices that can be delivered as a pacemaker only, or in combination with an ICD.

      Like

    • Catnip Blog January 28, 2018 at 1:17 pm #

      I’ve had a pacemaker for many many years. Her name is Tallulah Pacehead (named for Tallulah Bankhead).

      My model too, unlike the newer ones, is not MRI compatible. I’ve also learned that removing them is extremely dangerous and they will only do it if there is infection.

      Why do I care? Tallulah has been adjusted so many times that she no longer paces. I did not know all the questions to ask when I had the operation and in hindsight probably didn’t need a pacemaker. (Suspect my atrial fib is fibromyalgia related).

      I am sure that when I’m dead, Tallulah’s battery will still be viable!

      Liked by 1 person

      • Carolyn Thomas January 28, 2018 at 1:29 pm #

        Hi Judy-Judith – I love that you name your pacemaker! I know a number of heart patients who have named their ICDs, too.

        I’m curious what it feels like to have Tallulah inside you, but “no longer pacing”?

        Like

        • Catnip Blog January 28, 2018 at 1:41 pm #

          I had a contest to name Tallulah on Curious to the Max, talked about her installation and whether I should have a tattoo over the scar etc. – it probably was before we became friends.

          Tallulah’s largely silent. Every once in a while when I have a fibro flare the tissue around her feels tender – I suspect that’s a general inflammatory response?

          Unfortunately, the leads that run from her through veins into the heart develop scar tissue (to remove them they have to be lasered and that’s why it’s dangerous). No one mentioned that . . . . . I’m not sure if the scar tissue impacts the heart muscle.

          She gets tested every 6 months. They put a magnetized “thingey” over her which sends the readings to the computer. I can feel my heart respond and it’s quite uncomfortable but doesn’t last long. Other than a lumpy upper chest (you can feel her through the skin) and not able to have MRI’s, she’s content.

          Liked by 1 person

          • Carolyn Thomas January 28, 2018 at 1:52 pm #

            Interesting… So you have a dormant but content Tallulah inside your chest, but how’s your heart rate doing without her pacing assistance?

            Liked by 1 person

            • Catnip Blog January 28, 2018 at 2:51 pm #

              So far my heart is is ok with the exceptions of occasional arrhythmias which is probably Tallulah’s way of letting me know she wants a pina colada with a little umbrella in it but she’s in a temperate zone and gets bottled water instead.
              (there’s a HUGE history of arrhythmias in my family)

              Like

  5. PG Pacer Gal January 28, 2018 at 5:03 am #

    Great list of questions, especially for the new pacemaker patient. I had a million questions in the early days-weeks-months post-op but in those days we didn’t have these wonderful support groups on the web. I agree with you 100% it is such an amazing comfort to be able to reach out 24/7 to other heart patients who have been where you are right now even tho they can’t do anything they can assure you that you’re NOT alone no matter what your concern might be.

    My doctors are really good but they have no “lived experience” of the many little problems or questions that pacers worry about day by day by day. Thx for this.

    PG in Prince George, BC

    Liked by 2 people

    • Carolyn Thomas January 28, 2018 at 6:28 am #

      Thanks PG – I agree, online patient support communities help to reduce anxiety, share that “lived experience”, and offer practical suggestions to their peers in ways that few other resources can possibly offer.

      Like

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