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“:
♥
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.
♥
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 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.
♥
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 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!”
.
♥
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.
.
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).
.
Q: What tips have you learned about living with a pacemaker?
Heart Sisters 
I had a pacemaker put in mid-November and I have not felt well since. I have constant light-headedness and waves of nausea. I’ve seen a neurologist and had numerous tests and all came up negative.
But I still feel uneasy and not myself. Can’t seem to figure out why this is constantly going on. Any advice would be most appreciated.
LikeLiked by 1 person
Hello Alan – I’m sorry you’re experiencing these distressing symptoms. Right now, you just don’t know yet if your symptoms are linked to your pacemaker or not (although the timing is clearly suspicious).
Q: Have you been back to the pacemaker clinic to have your device adjusted? It’s important to have your settings checked to make sure they are working for your particular needs. Please consider going back to your cardiologist to discuss the possibility of “pacemaker syndrome” – which often has similar symptoms – typically treated by reprogramming the pacemaker.
I’m not a physician so cannot comment specifically on your situation, but I can say generally that medications are also sometimes the cause of nausea or lightheadedness. Ask your pharmacist for a medication review to check if any of your current meds might be reacting with other meds, especially if you’re taking drugs that lower your blood pressure.
Good luck to you!
LikeLike
Hi Allan,
Another thing to check is that your pacemaker is set to be “rate-adaptive”, which basically means it automatically adapts the rate with which it sends out electric pulses in response to your changing needs and activities.
Also, it’s possible that the heart rate at which your pacemaker is set to start pacing is set too low for you. I had to have my lower limit raised as I would sometimes have chest tightness if my heart rate dropped below 60 bpm. Before getting my pacemaker, I would feel that sensation much more frequently. If I checked my Fitbit, which isn’t necessarily all that accurate, my rate would often be around 57; so, I would get up and walk around or, if that wasn’t possible, just move my arms and legs to raise my heart rate.
This would happen when I was sitting, watching TV, working on a computer, sitting in a car, etc. It took me a while to figure that out as originally, I just tried to relax, which was the opposite to what I needed to be doing! According to my Fitbit, my resting heart rate is around 62 bpm, just above the lower limit.
I too had lightheadedness but mine was following my triple bypass surgery. This happened when I got up out of bed too quickly or sat up too quickly. I found that my blood pressure was on the low side. I have a home blood pressure cuff, which I highly recommend you get if you don’t already have one.
I was on an ACE Inhibiter drug (Pentopril) for blood pressure and a Beta Blocker (Metoprolol) to prevent my heart rate from going up too high. I consulted my Cardiologist and, since it had been over a year since my surgery, he took me off the Beta Blocker, which also lowers your blood pressure, which I wasn’t aware of at the time.
Having a pacemaker implanted should eventually make you feel a lot better, not worse! You know your body better than anyone else and you know when something isn’t right. Be persistent! Just keep pushing! Don’t accept “Learn to live with it” or “It’s all in your head”!
I’m glad you’ve found this wonderful site, it has been extremely supportive for me and gave me the courage to not accept “But, your pacemaker is working.” by a pacemaker technologist and “It’s in a good location.” by my pacemaker surgeon.
I wish you all the best.
Sincerely,
Linda Vardy
LikeLiked by 1 person
Thank you Linda for adding your very important and specific suggestions for Alan. Your own experience is a unique example of how, when heart patients know that something is just not right, they don’t have to accept “Your pacemaker is working” when it’s obvious that something is wrong.
NOTE TO READERS: read more on Linda’s amazing story about lobbying her doctor for her own misplaced/too big pacemaker to be removed and replaced appropriately.
Take care, Linda – stay safe out there. . . ♥
LikeLike
I find this to be a very helpful blog and I am glad to have found it. I am 77 and about 6 weeks post-op for the pacemaker insert. Thank you for being here!
LikeLiked by 1 person
Hello Iris – I’m glad you’re here, too! By now, I hope you are healing nicely from your pacemaker procedure.
Take care, stay safe. . . ♥
LikeLike
Hi,
I’m reaching out to you on behalf of my wife. She had her pacemaker and ICD procedure on December 29, 2022 and released from hospital on the 31st and now as of January 3rd, she is in pain.
Is this normal? I feel real bad for her suffering with pain. Is this normal?
Thank you
LikeLiked by 1 person
I’m sorry to hear that your wife is in pain. I’m not a physician, so of course can’t comment specifically on her situation, but I can say generally that she’s still in relatively early days of recuperation (five days post-op).
Most doctors predict that symptoms after an ICD/pacemaker procedure start to feel better within two weeks, with full recovery at 4-6 weeks. Swelling and bruising are also common in the early days. Recovery might also depend on the patient’s general fitness and health before surgery, and how the cardiac devices were implanted.
If her symptoms become worse instead of gradually better day by day, she should contact her doctor.
Good luck to her (and to you).
LikeLike
I’m 85 and have had a pacemaker since October 5, 2022. I’m happy to have found this blog.
Thursday October 20 I have my first in person cardiologist appointment. Some of my questions have been addressed today, reading the comments here.
I don’t feel as strong as I hoped and I easily get out of breath. My floors need vacuuming and mopped. I haven’t figured out how to shower without getting the incision site wet. I’m a former country girl, so I know about sponge baths. I soon will attend heart rehabilitation physical therapy. My family is not close but my daughter came 2 days last week and did major things while on long work calls. She ran out of time and couldn’t mop and vacuum. I will call a friend to help. I just haven’t had the energy to have someone here.
Hopefully I will be back to independence.
I’m grateful for this chat space.
LikeLiked by 1 person
Hello Bette – I’m glad you found some answers to your questions here (thanks to all of the ‘pacers’ who were so generous offering their help).
I’m not a physician but I can tell you generally that you are in relatively early days yet. It may be that a simple adjustment to your pacemaker’s settings will help you feel better. Ask your cardiologist about this when you see him/her this week. Also ask your cardiologist if by now you can stop worrying about getting your incision wet in the shower (typically, this is important to keep it dry for seven days until the incision begins to heal. Many heart patients who are warned not to get surgical incisions wet while bathing or showering can securely tape a piece of plastic bag or plastic wrap over the dressing to keep the incision dry. You might try that.
Great news that you’ll be starting your cardiac rehab program soon – that will help to rebuild your strength and make you feel better – with others like you.
And good for you for asking a friend to come over to give you a hand. Some of us are not good at asking for help – but this is a perfect time to call your friend. Don’t feel you have to entertain people who come by to help you out – they know that you’re still recuperating and need to rest.
Good luck to you. I hope your appointment with your cardiologist goes really well.
Take care, stay safe. . . ♥
LikeLike
Such a great blog! Thank you for this information, I appreciate your effort, please keep us updated.
LikeLike
I’m 60. Got a pacemaker 7 weeks ago. I have some breathing difficulties, don’t know if it’s because of the pacemaker or the extreme humid weather. How long till I feel comfortable? Also feel weakness and sometimes lightheaded. Is this normal? Have seen the doctor thrice. The pacemaker is working fine. So what might be the issue?
LikeLiked by 1 person
Hello Rahat – it’s hard to know if your symptoms are due to a pacemaker issue, or to the extreme weather (we know, for example, that feeling weak and lightheaded is a common issue during a heat wave). I’m not a physician so cannot comment specifically of course, but I recommend the advice of one of the “pacers” quoted in this article: just because the pacemaker is “working”, it does NOT mean it has been programmed to work in a way that is optimal for you. Many pacers report needing several adjustments to your settings especially in the early weeks and months. See your doctor about an adjustment.
Take care, good luck to you. . .
LikeLike
I got my first pacemaker 13 years ago after getting a heart mechanical valve replacement. I never had problems with pacemaker or pain in the pacemaker pocket for 13 years until now. The muscle surrounding on the top of pocket was very painful for a few days. I went to the ER to check my pacemaker and the doctor said that my pacemaker is working fine and had no infections & no blood clots.
The doctor thinks it’s a musculoskeletal that surrounds over the pacemaker may be causing it. So the doctor prescribed Robaxin medication (muscle relaxer) and the pain did go away. I told her that I don’t recalled lifting heavily or what.
I usually sleep on the left side that may pressing the pacemaker against the muscle. But I have been doing it for few months and never had the problems with it. So my question is why the muscle pain comes back surrounding the top of the pacemaker pocket after having no pain for 13 years?
LikeLiked by 1 person
Hello Thomas – you have a medical mystery on your hands. I’m not a physician so cannot comment specifically on your situation of course, but I can tell you that SOMETHING is causing your symptoms, and the fact that a muscle relaxer seemed to do the trick seems a good clue you’ve hit upon something to relieve those symptoms.
Hope you continue to find relief. If the pain returns, don’t hesitate to get it checked out.
Take care, good luck to you. . .
LikeLike
I had a pacemaker put in Tuesday. On the way home I started coughing and I figured that it’s just because the stuff that they gave me to knock me out for a while was coming out of my system, but I’m still coughing and I don’t know why.
Sometimes it feels like I have bronchitis, especially when I inhale. I would take some cough syrup maybe that would help but I’ve got to find out if I can. They told me not to take anything without asking my heart doctor, and I have an appointment Wednesday. I’m trying not to push myself but I don’t want to be a burden to my husband and daughter, and I don’t like my house being a mess if they’re too tired to do anything.
LikeLike
Hi Rhonda – did they take a chest xray before you left? If you haven’t call your doctor. Could be related to lung issues related to pacemaker, especially if no issues prior to pacemaker.
D
LikeLike
Lots of well needed info!
LikeLiked by 1 person
Hi, I was told my pacemaker was “running 57%” of the time and I was wondering if there’s a way to know if that’s low, high, normal etc.
Thank you so much.
LikeLiked by 1 person
Hello Kelly – I’m not a pacemaker expert but my understanding is that your pacemaker will be working all the time, but that doesn’t necessarily mean that it is constantly ‘pacing’ your heart. (‘Pacing’ is when the pacemaker sends out electrical impulses to stimulate the heart). Your pacemaker can be set at many different settings, depending on the condition your doctor is treating you for. You’re likely going into the Pacemaker Clinic to monitor how things are working (typically every 3-12 months, depending on your specific pacemaker) – next time you go, ask the technician to explain your settings for you.
Meanwhile, I hope that you are otherwise doing well with your pacemaker. If you’re feeling anything that doesn’t feel “right”, just call your doctor.
Good luck to you!
LikeLike
ICD/pacemaker: someone asked “Can I carry a backpack on the ICD? Well, I have been carrying golf bags on each shoulder for the past year. Five months after the surgery I went back to my job as a caddie. Carrying two bags obviously one of the straps was going to be close if not directly on the defib/pacemaker. Worked the whole season with no problem whatsoever.
I hope this gives some new patients some hope. Good luck ( also walking 5-7 miles during the round )
LikeLiked by 1 person
I have had a new box fitted and am struggling, constant left arm pain, I am left handed so when I do my jobs at home it constantly aches. The last pacemaker I had I never knew it was there, this feels like it’s got a big vein at the side and I can feel it, it’s showing on my skin, the last one I never knew it was there, can you advise?
I have been back to the Cardiologist and he said it could take a year to settle down. I am booked in for an angiogram could you give me any advice, I would be grateful.
LikeLiked by 1 person
Hello Hilary – this sounds pretty distressing! Especially when you – understandably! – compare it to your former trouble-free pacemaker. You didn’t mention when you had this new one implanted so it’s hard to tell if it’s just the ‘new’ adjustment period that’s causing these symptoms or not. Although your former device seemed just fine, this new one might be bigger, or not implanted as deeply as the other one, or any number of changes compared to your first one.
I’m not a physician so cannot comment specifically of course, but I am concerned that your cardiologist estimates “it could take a year to settle down”. Pacemaker manufacturers like Boston Scientific estimate “a few months” as the maximum settling in period. Every patient is different, and every device is different (how and where it’s inserted, etc.)
That doctor’s estimate reminds me of a comment I read on the Pacemaker Club website (I encourage you to check it out and ‘join the club’ – then visit the FORUMS page, lots of different topics listed there where you can read or ask questions; the site was started years ago by a patient, for patients).
This comment was from a woman who had been experiencing a lot of discomfort with her new device, but just kept waiting for things to improve. After almost a year, she said that she realized this wasn’t going to get better on its own and she went back to the doctor, another procedure was done, and she improved immediately.
Good luck to you… Stay safe. . . . ♥
LikeLike
Hi Hilary & Carolyn,
I too have discomfort in my left arm from my pacemaker as the wires seem to butt up against my arm, but fortunately I’m right handed. (I had a “conversation” with Carolyn over a year ago about this and found her suggestions helpful.)
Hilary is the first person I’d heard about who has a similar problem. I had hoped the discomfort would would go away when the swelling went down; but in 16 months it has only improved marginally.
The pacemaker inhibits the range of motion of my arm and I can feel it when I put in my right earring. My arm gets sore as does the site of the pacemaker when I do anything involving the use of my arms in front of me: Nordic pole walking, pushing a stroller or mower, raking, shoveling snow, leaning on my arm to weed etc..
I went back to my surgeon two weeks ago and she said that she has been doing pacemakers for 10 years and had never seen this before. She said that people sometimes complain that the pacemaker is too close to their sternum. She told me she could re-site the pacemaker; but, the surgery would be worse than the initial surgery as they would be dealing with scar tissue and tissue that has grown onto the pacemaker and of course would have to lengthen the incision and then sew up the old spot so the pacemaker doesn’t slide back.
I had a significant amount of bruising the first time as I am on blood thinners. However, I wonder if the abrasion with my arm made it worse. In any case, I’m now trying to decide if I can live with the discomfort I feel every day or should go ahead with another surgery. I don’t want to exchange one problem for another. I’ve also been reluctant to go ahead with anything more during COVID and expect I would be low on any priority list. It was encouraging to read Carolyn’s comment regarding a woman who had another procedure and improved immediately.
Sincerely,
Linda Vardy
LikeLiked by 1 person
Hello again Linda – that’s interesting about your surgeon saying she’s never seen this before (good for you for arranging to go see her, by the way!) On the Pacemaker Club website (again, a terrific resource if you have specific questions, somebody on that site has already experienced the same thing and can likely answer) the issue of shoulder and arm pain seems to be a commonly described problem.
Speaking of which, I just read of another case on the PC site in which a patient wrote that his “pain finally quit after the first year to year and a half. Now I can do what I want. It just takes time for the body to heal and we all heal at different rates…” That’s a happy ending, but still 1-1.5 years seems like a remarkably long recuperation, doesn’t it?
It’s important to be realistic about potential issues with implantable devices. These may indeed be rare, but it leaves the patient with an awful dilemma – toughing it out hoping it will get better, or lobbying for a new scary procedure.
Here’s another patient example from the Pacemaker Club site from a patient: “It is now 6-months on and I have had some issues with pacer pocket infection. I had my pacer removed, pocket cleaned, and dead tissue remove and my dual chamber pacer reinstalled in the same pocket. Doc says it will heal around the pacer in the next few months…”
I’m curious about your surgeon’s initial response that seemed to be an attempt to scare you into shutting up (i.e. listing all the horrible issues that may happen if she goes back in). This may sound harsh (remember that I am NOT a physician!) but you have had 16 months of pain, patiently waiting for these symptoms to go away on their own. It’s a quality-of-life issue at this point. Perhaps a second opinion is in order?
Whatever you decide, good luck to you, Linda. Take care and stay safe. . . ♥
LikeLike
Hi Carolyn,
Thank you for this. I tried to sign up for the Pacemaker Club; but, haven’t received an email that allows my email address to be checked and before I can log on. Should I start all over and try to sign up again?
Thanks,
Linda
LikeLiked by 1 person
Hello again – I’m not sure (I have no connection except as a reader) but I’m guessing that because this site is run by patient volunteers, it’s not like a for-profit business with 24/7 paid staff. You could start over but I think I’d wait a day or two before you try again, just in case… Good luck!
LikeLike
Hi Carolyn,
After 19 months of having my arm bump up against my pacemaker, I went ahead and had my surgeon reposition my pacemaker. On Dec. 1, I had a new smaller pacemaker placed closer to my sternum. The surgeon had to really tug to get the old one out; so the old site was quite swollen and sore as well as the area of the new site and the whole area was quite tight.
All of this has improved somewhat and I’m already noticing an improvement in the range of motion of my arm. My arm is still sore, likely from the constant friction with the pacemaker. I also had quite a bit of bruising; but, not nearly as much as last time. This time there aren’t any restrictions on the use of my left arm as they used the old wires.
It does make me wonder why she didn’t use a smaller pacemaker in the first place and position it where she has now positioned my new pacemaker. Then, I could have avoided 19 months of pain and the risk of another surgery, especially during these scary COVID times
I want to thank you for encouraging me to be persistent and not accept the discomfort and the pacemaker clinics technician telling me that “they won’t do anything all the time the pacemaker is working because of the risk of infection”. COVID also discouraged me from proceeding, especially knowing I would be a low priority.
Please feel free to share any of my story with any one else who is going through something similar. I’d also recommend that they do something sooner than I did before the original pacemaker becomes so embedded that it’s difficult to remove.
With my best wishes for a Merry Christmas season and a 2022 that sees the end of COVID!
Sincerely, Linda Vardy
LikeLiked by 1 person
Linda!! Thanks so much for touching base to update your progress! That is awesome news about your smaller pacemaker. After what your body has been through this month, it will likely take some time to be significantly healed up, but it sure sounds like you’re heading in the right direction, doesn’t it? I hope that the discomfort you had thought you “had to live with” gradually disappears for good. I will contact you via email re your kind offer to share more about your experience.
Meanwhile, Happy New Year with your NEW pacemaker; take care, and stay safe. . . ♥
UPDATE: Dear Readers: I did follow up with Linda and her full story was published here in January 2022.
LikeLike
Hello, my father just had a pacemaker put in this past June. He had stents put in first in October. He seemed to be improving but after the pacemaker, he is declining. I am worried. He is experiencing lightheadedness and fatigue.
My friend’s mother had a pacemaker put in and she declined severely. She was in her 80s but did not make it.
I am really worried. The doctors are going to send him to therapy, and feel that maybe the medication needs to be adjusted. After reading a few sites it seems that perhaps the pacemaker is not working properly. I would love to know your initial thoughts. I think he should have it removed.
LikeLiked by 1 person
Hello Donah – I can see why you’re worried. Lightheadedness and fatigue in an older person can lead to falling down – a serious risk factor in itself – and often a reason that patients are afraid to exercise or go to cardiac rehab. I’m not a physician so cannot tell you what to advise your Dad, but I can tell you that it’s important to remember that, as some of the pacemaker patients mention in this article, a pacemaker often needs its settings adjusted at first to get just the right balance – this is an easy fix. He should ask to have his settings reviewed, along with a medication review. The “squeaky wheel gets the grease” – he needs to update his doctor about these symptoms instead of sitting quietly and putting up with them.
It’s also very important to remember that your Dad’s doctors must have had a good reason to implant a pacemaker for him in order to restore a healthy heart rhythm, so removing the pacemaker may not be recommended before other more likely reasons for his new symptoms are ruled out.
Good luck to him. . .
LikeLike
How far can you travel by car with your combo pacemaker def from your home monitor ?
LikeLiked by 1 person
Hello Afred – I’m not a physician, but my understanding is that it can depend on the type of device you had implanted, and on how often scheduled home monitoring checks are set up for your device. Some people have the device monitor set up to report daily, or weekly, or every three months, etc. If problems are detected, the remote monitor phones in a report that is then submitted to the doctor. If you’re not at home when the scheduled monitoring check happens, it will be rescheduled. Remote home monitoring is done by telephone or the Internet, so some heart patients take their home monitor with them on holidays if they’ll be away from home for a long time.
Please call your doctor to confirm what your monitoring schedule is.
Take care, stay safe . . . 🙂
LikeLike
Hey, 4 yrs in… all good,
1. don’t push on it
2. no cell by it
3. no chainsaw
4. no tig welding
5. No cdl license
6. Stay away from big magnets
I was a 3 am emergency… Sunday 8am…on my birthday…crazy…
I’M ALIVE!
LikeLiked by 1 person
Burning up my 25 lives..
LikeLiked by 1 person
Hi Darrell – after four years, you’re a pro! Thanks for those practical tips.
Take care, stay safe. . .
LikeLike
It’s been 18 months and it’s been like a roller coaster ride for me. Mine was an emergency implant because of bradycardia and 2nd degree AV block. My only symptom was fatigue. My PCP sent me directly to the ER from her office after my annual check up, next day I had my Boston Scientific dual lead pacemaker. Some days I have energy and others not so much.
LikeLiked by 1 person
Hello Linda – having an emergency pacemaker implanted like that must have been quite a dramatic experience for you. After 18 months, I too would be expecting to feel better more consistently. Re-read the first Q&A (specifically the last answers about fatigue) to see if any of those suggestions might work for you. It’s also possible that what you’re feeling might not be pacemaker-related at all. Make an appointment with your doctor to review your symptoms just in case your low-energy days have another cause.
Good luck to you! Take care, stay safe. . . ♥
LikeLike
Good morning, I’m a 50-year-old woman who got a pacemaker implant due to an AV block. It serves as a back-up so that my heart rate does not go below 60.
I had this done four weeks ago. I have pain in the middle of my chest that feels like muscle pain and I have a hard time catching my breath. My cardiologist did a stress test and they did an x-ray a week ago and everything was fine. Has anyone experienced this?
LikeLiked by 1 person
Hello Lanette – I’m sorry that you’re experiencing troubling symptoms after your pacemaker. Any chest pain needs to be checked out, and it appears that your cardiologist is taking your symptoms seriously.
We know that it can take a couple of months to fully recuperate, and that there can be some complications post-pacemaker (e.g. the leads getting dislodged) that may cause discomfort, a hard time breathing or more frequent hiccups, oddly enough.
I’m not a physician so of course cannot comment specifically on your case, but I can suggest that you might want to consider starting a Symptom Journal (date, time of day, description of pain – sharp? dull? stabbing? – and what you were doing/eating/ feeling in the hour or so leading up to worsening symptoms (even what the weather was like). Sometimes a pattern can begin to reveal itself that can help your cardiologist solve the mystery. If symptoms continue over time, or worsen instead of improving, please see your doctor.
Good luck to you – take care, and stay safe. . . ♥
LikeLike
Just need some help – my husband had a pacemaker put in 3 weeks ago. He came home next day ok. Ate great at Christmas dinner. Then last 2 days he vomited, couldn’t eat, woke up new years Eve before midnite and had nausea dry heaves. Don’t know what to do. When this passes then he feels better.
I’m worried. His cardio Dr checked him Dec 29 ok. See him 26 Jan. Any advice?
LikeLiked by 1 person
Hi Leonette – I’m not a physician so cannot comment specifically on your husband’s very distressing symptoms, but I can say generally that it would be uncommon for nausea or vomiting symptoms to be linked to getting a new pacemaker.
Call your family doctor to report these symptoms in order to rule out a gastro-intestinal problem. Meanwhile, you’ll need to be careful for signs of dehydration because of this vomiting. If his symptoms continue or especially if diarrhea and vomiting last more than 24 hours, go to the ER for help.
Good luck to you both. . .
LikeLike
I would ring him straight away or go to the nearest hospital. This should not be happening.
LikeLike
Can you take a photo and place it on here so we all can have a look?
LikeLike
Take a photo of a pacemaker, Barry?
LikeLike
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.
LikeLike
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…
LikeLike
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
LikeLiked by 1 person
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…
LikeLike
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?
LikeLiked by 1 person
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, the swelling starts to decrease, 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 guessing 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…
LikeLike
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
LikeLiked by 1 person
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!
LikeLike
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
LikeLiked by 1 person
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…♥
LikeLike
Hi all,
I’m 25 years old and I got my ICD nearly 3 weeks ago. I stumbled upon this blog when trying to check if the ICD bumping into my arm when moving it was normal (I also had new bruising after the initial one from the surgery disappeared).
I called my nurses last week and they told me to wait for a few days to see if it went back to normal. I hadn’t had any pain until two weeks post-op had passed; I think the ICD moved during my sleep. My doctor finally called this week and they will check tomorrow; they say that they might be able to move it by massaging the area, since surgery is not really an option right now.
The ICD is blocking most of my movements since I cannot hold my hands together or touch my right elbow with my left hand. This will affect most of my day to day activities such as driving, cooking or lifting things.
Are you still feeling this pain? Did you go for the surgery?
I’m feeling a bit alone right now, since not many people my age have an ICD or pacemaker around me and don’t really know what we’re going through. If you ever want to talk about this (anyone who’s reading), I’m on Instagram as well (@onaalsina20).
Thank you!
LikeLike
Hello Ona – in response to your questions to Linda Vardy, I can tell you that she DID go back for surgery, and her pacemaker was replaced with a smaller device, and also implanted closer to her sternum. She reports that the second procedure was a success. You can read more about her story here: https://myheartsisters.org/2022/01/16/dear-carolyn-linda-vardy-two-pacemakers/
Take care, good luck to you. . .
LikeLike
Hi Ona,
I’m so sorry you are going through this and at such a young age! It is definitely not normal for your pacemaker to be butting up against your arm.
As you’ve read, I had the same issue. It did improve marginally once the swelling went down; but, I’m now convinced that some of the massive bruise I had, which I thought was due in part to the blood thinners I’m on, was in fact due to the friction between my pacemaker and my arm. I had significantly less bruising following my second surgery. I still have some soreness in my shoulder likely due to the damage that was done from my pacemaker hitting my arm and scar tissue which probably developed; but it is nothing like the soreness I used to experience and I do have my full range of motion back.
It sounds as if this is lifestyle altering and that is unacceptable. Don’t accept, “But the pacemaker is working so they won’t do anything about it!”
I’m afraid I don’t do Instagram; but I do Facebook and email and I give Carolyn my permission to pass my email address on to you. I’d also be happy to talk to you on the phone if you think that would be helpful.
I wish you all the best.
Sincerely,
Linda Vardy
LikeLiked by 1 person