Dear Carolyn: “After 19 months of daily discomfort, my pacemaker was replaced”

by Carolyn Thomas   ♥  @HeartSisters

             .     Clayton & Linda Vardy

As part of our occasional “Dear Carolyn” series of personal patient perspectives shared by my readers, today I’m introducing you to Canadian heart patient, Linda Vardy, a retired high school math teacher. You might expect that Linda’s experience of undergoing triple bypass surgery at age 61 (after being told for almost a year that all of her cardiac test results were “inconclusive”) would be a dominant theme in her story – but that part is for a future post.

Ten years after her surgery, Linda was told that she now needed a pacemaker implanted. And that’s when things started going sideways. While I was reading her story, I couldn’t help wondering if Linda might have been treated differently had she been a male heart patient.  Read her story and let me know what you think. . .       .

“Fast forward ten years after my triple bypass surgery to March 2020 – and the start of COVID-19.  A lifelong ice skater, I could no longer skate at the indoor rink, so I started walking outdoors with my husband, Clayton. To avoid crowds of people, we walked along a hilly country road. He’s a pretty fast walker, and I began having chest tightness while walking uphill.

“My cardiologist ordered a Holter Monitor test, and it showed something unexpected. During the day, likely when sitting at the computer, there were times when there were 3-4 seconds between beats of my heart. My cardiologist was surprised that I hadn’t fainted or felt light-headed. He recommended a pacemaker.
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“After having my pacemaker surgery bumped twice because of pandemic-related operating room scheduling  (one of those times was when I was already prepped, hooked up to the IV, ready to go!), the pacemaker was finally implanted.  I’d had no pre-op meeting with the surgeon. Afterwards, I had a pretty sore shoulder and an AMAZING bruise (my entire left breast was purple!)  I also had significant swelling that took a long time to go down. Once it did and the bruising dissipated, I realized that I was still having discomfort in my left arm from the pacemaker in my chest butting up against the upper arm.  My pacemaker was also inhibiting the range of motion in my arm. It even hurt when I moved that arm to put in my right earring.  Whenever I did anything involving the use of my arms in front of me (Nordic pole walking, pushing a baby stroller or lawn mower, shoveling snow, leaning on my arm when weeding the garden, etc.), both my left arm and the site of the pacemaker hurt. I now wonder if the constant abrasion with my arm made my bruising even worse.
                   ©Chombosan, Penn Medicine
“When I went to the Pacemaker Clinic and reported this problem I was having, the technician told me that I was a “small person” so there wasn’t that much room to place the pacemaker, and that the surgeon would have put it “in the best place”. She also said that the doctors wouldn’t do anything about my problem because the pacemaker was working, and they wouldn’t want to risk infection.  She repeated that statement when I returned six months later – even though she admitted that she could feel the pacemaker against my arm when I was just sitting there.
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“Last July, I had a telephone appointment with my cardiologist. I told him of the difficulties I was still having with my pacemaker placement, and he arranged for me to have a conversation with the surgeon who had implanted it.
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“When I met with her and explained these difficulties, she told me that she’d been doing pacemaker surgeries for 10 years and had never seen this problem before.  She never asked to see the site. So, I decided to show her. I had only unbuttoned a few buttons when she said, “It’s in a good location!”  – even though she could see only part of my scar. She never took a close look, or touched me to feel around the pacemaker site to see what I was talking about!  It certainly didn’t give me confidence in her.
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“The surgeon explained to me that she could re-site the pacemaker, but the surgery and recovery would be worse than the initial surgery, as they would be dealing with scar tissue plus tissue that had grown onto the pacemaker itself, and that there was also a risk of disturbing the electrical wires attached to my heart. She would have to lengthen the incision and then sew up the old spot so the new pacemaker wouldn’t slide back.
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She did say that she would check to see if a smaller pacemaker was compatible with my current wires, and promised to have a discussion with her colleagues in Kingston.
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She never got back to me.  I could have sought out another surgeon. But I wasn’t sure how to go about that in a timely manner, and I knew it would be tricky.
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With that discouragement, I had to decide if I could live with the discomfort I felt every day, or if I should go ahead with another pacemaker surgery. I didn’t want to exchange one problem for another! I’d also been reluctant to go ahead with anything more during the COVID pandemic, and expected that my surgery would be low on the hospital’s priority list.  I was encouraged, however, by reading your comment on Heart Sisters about a woman who’d had a similar pacemaker placement problem, had another surgery, and improved immediately.  You also encouraged me to be persistent and not to accept the discomfort and discouragement I received from both the technician and the surgeon. I then spoke to a colleague who had had several pacemaker surgeries, and she also encouraged me to keep pushing. Learning that my discomfort was not “normal” really helped me take the plunge.
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After 19 months of daily discomfort, on December 1, 2021, I had a new smaller pacemaker implanted, this time closer to my sternum.
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The surgeon had to really tug to get the old pacemaker out, so the original site was more swollen and sore than the site of the new pacemaker, and the whole area felt tight.
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After six weeks, all of this has improved!
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Although the site of the new pacemaker is no longer sore, the old site is still tender to the touch and a little swollen. I had quite a bit of bruising, but not nearly as much as the first time. My arm is still sore and tight. I suspect that the constant friction with the original pacemaker for a year and a half had caused damage that still needs to heal.  However, I have already improved the range of motion in my arm, and it no longer hurts to put in my right earring!
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This did make me wonder:  “Why didn’t my surgeon use a smaller pacemaker in the first place, or at least position my pacemaker where she has now positioned the new one?  I could have avoided 19 months of pain and the risk of another surgery – especially during these scary COVID times.”
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Although I wish I’d done something sooner, I’m thankful that I had my surgery before the Omicron variant shut down scheduled hospital surgeries.
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My pacemaker surgeon doesn’t normally see her patients after surgery because patients are seen at the Pacemaker Clinic. However, she did want to see me. She said I was “a special case”.  I saw her last week – six weeks after my surgery. I told her that the new surgical site was no longer sore, but the old site was still sore and swollen, as was my upper arm.
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“This time, she did take a good look at the site, and was pleased with how well I’m healing. She told me that my new pacemaker is about three times the cost of my first one. (The regular pacemaker costs around $2,700; my new smaller one costs $10,000).*  She had to get special permission to order it for me.  That may explain why surgeons don’t use the smaller ones on a regular basis.
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“She also told me that when she consulted her colleague in Kingston, he’d told her that he had about 10 patients with the same complaint, that it would NOT make a difference to re-site their pacemakers,  and that he had told his own patients that they “had to learn to live with it”!!! 
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“I told my surgeon that this pacemaker replacement surgery has made a tremendous difference in my life, and she said that she was going to call her Kingston colleague and tell him about me. That makes me even more thankful that I went ahead!  And if nothing else, my own surgeon has learned something.
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“I now encourage anyone else who is going through something similar to act sooner than I did before the original pacemaker becomes so embedded that it’s difficult to remove. Perhaps unlike me, they won’t have to suffer 19 months of discomfort.”
Regards,
Linda
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* Cost of pacemakers:  because Linda lives here in Canada (aka “commie pinko land of socialized medicine”),  the cost of her hospitalizations, physician appointments, surgeries, pacemakers and follow-up care was covered under our healthcare system. 🇨🇦
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       Q: Do you think doctors would respond to a male heart patient in the way they did to Linda?

NOTE FROM CAROLYN:  I wrote more about issues like asking for a second opinion and the very common reality of women being reluctant to be perceived as ‘difficult’ patients in my book A Woman’s Guide to Living with Heart Disease.  You can ask for this book at bookstores (please support your local independent booksellers!) or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher Johns Hopkins University Press (use their code HTWN to save 30% off the list price when you order).

See also:

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–other Heart Sisters blog posts in the “Dear Carolyn” series
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Doug Rachac is my go-to implantable cardiac device expert. After 14 years working for the medical device company Medtronic, Doug became a heart patient with an implanted device himself! Doug has created several excellent patient-friendly YouTube videos about cardiac devices like pacemakers and defibrillators.
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-Visit the online patient communities at the Pacemaker Club  or at WomenHeart’s All About Arrhythmias

7 thoughts on “Dear Carolyn: “After 19 months of daily discomfort, my pacemaker was replaced”

  1. Fascinating! I’m so glad Linda continued to advocate for herself and that she achieved the result she wanted. All too often patients experience what Linda went through but remain silent and just “deal” with the discomfort and pain. I love reading stories like this.

    I am curious to learn which pacemaker Linda ended up with and which she started with. There are certainly different tiers of pacemakers. She may have initially received a lower end model that was swapped out for a higher end model. And the sizes do vary, but persistent pain isn’t a common side effect even in petite patients. I have heard of instances where a device rests too close to a nerve, or where the skin is stretched so taught as to be painful. But those are very rare instances.

    There are smaller models of devices, but the size difference isn’t so large that the size of the device would be considered significant in an adult patient. Unfortunately there aren’t male or female sizes, and there aren’t really “kid” sizes either. Pediatric patients have their “adult” sized pacemaker implanted in their abdomen until they are large enough to support a pectoral implant. Some patients request a sub-muscular implant vs an implant just beneath the skin. This is what I did for my second ICD as the first one had a corner that seemed to stick out a little and painfully catch on everything in my everyday life. A sub-muscular implant is also a bit less noticeable visually. The unfortunate side effect is that its more invasive, thus more painful, and takes a bit longer to recover from (but was SO worth it from my perspective).

    Again, Kudos to Linda for speaking up and being persistent. Sometimes being your own strong advocate is needed, and in this case the result is perfect!

    Liked by 1 person

    1. Thanks Doug for weighing in here with your very informative perspective – as both a person living with an implanted device and a longtime Medtronic alumnus!

      I suspect that the placement of the pacemaker (actually making contact with her upper arm) was also a factor in Linda’s case, since the new PM was placed closer to her sternum – with almost immediate relief. You’re right, her first PM was about 1/3 the cost of her new one (which does suggest the second was a higher end model!)

      Almost as puzzling to me about Linda’s story was the reluctance of the surgeon (and also her colleague in Kingston who tells his 10 patients that they just have to “learn to live with it”) to take her concerns seriously for 19 months.

      I’ve heard that making that decision of sub-muscular vs sub-cutanous device implant surgery is a tough call (weighing pros and cons of a far more invasive procedure) but I’m so glad that in your case, it was the right decision for you given the quality of life issues caused by that sharp ICD corner that would “painfully catch on everything!” – OUCH!

      Take care, stay safe! And thank you again for sharing your expert knowledge with us, Doug!

      NOTE TO READERS: Check out Doug’s excellent series of educational YouTube videos for people with any implantable cardiac device.

      Like

    2. Hi Doug,

      Thank you for replying to my story. Although my devices have been noticeable under the skin, I can’t imagine having one with “a corner that seemed to stick out a little and painfully catch on everything in my everyday life”. Good for you for having another surgery to correct that very annoying issue!

      My first PM was a Biotronik Model 407145 – Endora 8-DR-T and my new one is a Reply DR Safe R manufactured by MicroPort CRM in Italy. From what I can tell, my new PM is 2 1/2″ (6.4cm) further away from my arm!

      Sincerely,
      Linda

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  2. Linda was awfully brave to return for a second surgery by the surgeon who didn’t even examine her when she went in with complaints. I would have been off to another surgeon for a second opinion. I am happy that everything turned out ok.

    I had to be persistent and make waves when all of my pre-op symptoms returned, 6 weeks after my open heart ventricular septal myectomy. What really was a help to me was that there was objective data on the echocardiogram showing return of obstruction. I wonder, if just based on subjective symptoms like shortness of breath, chest pressure, fatigue etc. if I would have gotten approval to have the surgery redone at Mayo Clinic – or would I have been told to just live with it???

    Liked by 1 person

    1. I agree, Jill – Linda WAS brave to trust the surgeon who tried to talk her out of that second surgery. I wonder how many patients in similar situations are simply dismissed with “You’ll just have to live with it!” – as the Kingston surgeon tells his own patients? On so many levels, despite its happy ending, Linda’s story is about BAD MEDICINE, but worse, it’s a story about a patient’s valid reports of reduced quality of life being minimized and dismissed.

      You too were so fortunate that your echo showed some clear evidence of obstruction! In my experience, women who present with textbook cardiac symptoms but “normal” test results (as I did) can kiss an appropriate diagnosis goodbye. Even in mid-heart attack with central chest pain, nausea, sweating and pain down my left arm, I was confidently told: “You’re in the right demographic for acid reflux!” – and sent home from the E.R.

      Take care, stay safe. . . ♥

      Like

  3. Wow, what a distressing experience! Thank you for this valuable post about someone who had the courage to persevere until someone got it right for her.

    How arrogant, defensive, and uncaring some doctors can be sometimes.

    Liked by 1 person

    1. Hello Marcy – you’re so right! Linda’s experience contains a number of reactions from physicians that do appear to be arrogant and defensive – which is of course perceived by patients as “uncaring” – no matter how caring that person might claim to be.

      Even the Pacemaker Clinic tech insisted that the surgeon “would have put it in the best place” – despite the reality that the original site was clearly not the “best place” for a too-big pacemaker.

      Linda did tell me that the surgeon’s decision to “fight to get me the smaller device and her desire to tell her Kingston colleague about me has somewhat elevated her from the low opinion I had of her…” I hope she’s right when she now says, “My own surgeon has learned something”.

      I congratulated Linda on being far braver than many of us would be. I also hope that the 10 heart patients of the Kingston surgeon with “the same complaints” (the ones whom he told “had to learn to live with it”) will also read Linda’s story here. I’d bet my next squirt of nitro spray that all or most of them (given that women tend to have smaller frames/hearts/arteries than our male counterparts) are also female patients.

      Take care, stay safe out there . . . ♥

      Like

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