by Carolyn Thomas ♥ @HeartSisters
One of my Mayo Clinic heart sisters was recently invited to speak at a Patient Advocates Forum during the annual AdvaMed conference in Washington, DC – billed as “the premiere annual conference of the medical technology industry”. This industry includes companies that manufacture cardiac devices like pacemakers and ICDs (Implantable Cardioverter Defibrillators).
So she did what all of us lucky ‘Mayo grads’ are easily able to do: she contacted other graduates of the annual WomenHeart Science and Leadership Symposium for Women With Heart Disease at Mayo Clinic. What, she asked us, would patients want her to say to these 1,000+ delegates from device companies (and the physicians who care for heart patients) attending this conference? She wanted other patient perspectives on what it’s like living with a metal device implanted inside your chest, what they worried about, and what could be done better. Here is a sampling of the responses – so listen up, titans of the medical device industry and all those who implant these devices into our bodies:
- “I believe they need to know that to say to a patient: ‘Oh, don’t worry about it – you’ll just defibrillate!’ does NOT put our minds at ease. It does, however, make me wonder how they would react if we hooked jumper cables up to them and told them to go ahead and start the car! Being shocked is its own trauma.”
- “1. Don’t tell us it’s critical to implant an ICD due to low Ejection Fraction, and then be so casual about setting the surgery date a month or two out! Talk about anxiety! 2. Don’t say things like: ‘This will be nothing compared to what you’ve already been through…’ 3. Be honest with us ‘smaller framed’ women. Yes, the surgery and recovery does hurt – a lot! (In my case, my breast muscle had to be cut to insert the ICD, not just under the skin flap). It still hurts five years later when working out, etc. 4. Give us useful information (both physical and emotional) about ‘living with’ an ICD for both us and our loved ones.”
- “Be mindful of all generations and how a device affects people in similar yet different ways depending on life stage. Support groups or opportunities for those in different age groups is so important to help normalize getting a cardiac device. Also, have a point person in the clinic to talk to if you have questions so you don’t have to talk to seven different people. Having one person who knows you can really reduce anxiety. As an ICD patient and healthcare professional, I know that anxiety and depression can be normal responses to getting a cardiac device, and heart failure in general. MDs and device makers need to be aware and provide resources for these as well.”
- “Encourage all docs and clinics to get online communication with their ICD patients (email, etc.) as the wait is long between our calls and your answers.”
- “Remember your comment about the fact that you cannot drive for a period of time after an ICD fires, but no one tells you how you are supposed to get around or how to find help with transportation! Customer service extends well beyond the device.”
- “I had a 3-year old when my first cardiac device was implanted. You want to cuddle your kid, but suddenly his head bumping the ICD in your chest is quite painful. It’s hard to make him understand that he needs to lay his head on your right shoulder, not your left.”
- “Let’s not forget about caregivers. Resources for them and education regarding their loved ones’ condition is very important as well.”
- “I had my St. Jude ICD implanted almost five years ago. My cardiologist suggested I get the device and sent me on to the electrophysiologist (EP). This is where the lack of communication started. The EP acted like it was no big deal: ‘Just schedule your surgery on your way out – and by the way, I only do them on Tuesdays!’ No education provided for me as a patient whatsoever. A few months post-surgery during an office visit to my EP, I said ‘It is still very tender to any kind of touch’ (seatbelt rubbing, grandkids sitting on my lap with head near scar, my bra strap). His response: ‘Well, it shouldn’t be.’ Fast forward almost five years: it is still tender! My device is so superficial you can see the lead wire and screws. They offered to redo it, but knowing about others’ traumatic ordeals with replacements, I am hesitant to mess with things. When it hurts, it is a constant reminder – which in turn creates anxiety for me. They have been promising me technology that would plug into my cell phone to monitor my device while traveling. I should not need a land line in this day and age! I currently have an adaptor that allows me to travel with my nightstand monitor and plug in to stay monitored. But I cannot just pay for service when I travel, I must sign a contract for two years and am billed $16.99 a month for it to sit in a box for many months at a time! Do they call this ‘Patient Support’? I don’t want to continue paying a monthly charge without a better explanation as to what good it is doing.”
- “The vest* is horrible for women (*an external vest-style defibrillator worn, sometimes for months, while patients are waiting to get a surgically implanted version). There is no ‘bosom’ room. Doesn’t fit well, especially if the bosom is of any size.”
- “If device companies want to give out a very helpful ‘souvenir’ of the placement surgery, one of those seat belt pads would be very thoughtful. Like many other women, I am rather small-framed on the top, and I LOVE my seat belt pads and the way they allow me to drive without the worry of ripping the ICD out of my chest if I have to stop fast!”
- “They warned me about magnetic’ fields (i.e. security checks) but not ‘electrical’. Concerts, even ‘in the neighborhood’ rev up my device/heart. Driving in higher altitude is like hiking in it, even though I’m sitting in the car. Must acclimate a day before any activity. And the anxiety over the pain, ‘tweaks’ in the chest, etc. is awful if you don’t know what it’s supposed to feel like if the ICD really shocks you. Can’t tell you how many times I’ve called one in, or lay there worrying about it. And what do I tell loved ones if I don’t even know? Now they’re freaking out, or thinking I’m insane!”
- I wish I had known that my already small breasts would now be lopsided. My left breast is now about 2″ lower because of the device implantation.”
And here’s what cardiologists want patients to know about adjusting to an ICD (via WomenHeart: The National Coalition For Women With Heart Disease)
Thank you to all my Mayo heart sisters who generously contributed their two cents worth here.
Q: What else would you like device makers and doctors to know about what it’s like to live with these implanted cardiac devices?
Coping with your partner’s ICD and heart disease
Hello pacers! A little Q&A about your pacemaker
Do you know the difference between a pacemaker and an implantable defibrillator?
Diagnosed with what? Brugada Syndrome?!
ICD warning: defective defibrillator leads recalled
Do you know the difference between V.T. and T.V? – A glossary of cardiac terms
YouTube patient videos from Doug Rachac (14 years working for cardiac device manufacturer Medtronic, now a device-wearing heart patient himself)
48 thoughts on “What heart patients want ICD makers to know”
With the S-ICD it is painful everyday even 3 years later. I cannot sleep on that side and I protect it when my husband is rubbing me because I live in fear that he will touch it. I’ve also had the regular ICD- drs should be more open that down the line I may need to have the wires removed do to breakage which is a complicated procedure.
I have nerve damage from both implantations. From the regular ICD I get pins and needles in my shoulder when I sit at my desk too long. From the ICD I have nerve damage to my arm and neck due to the angle my arm was at during the surgery and for how long.
I know this is 7 years old, but I sure wish I had this article when I got out of the hospital when having my ICD implanted. 16 months later, and it also causes me pain, discomfort and anxiety. My breast hurts everyday! I too can see every part of ICD through my skin. Which terrifies me when it is touched by everything! This article makes me feel better that all this is normal, and not just me!!
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Hello Sandy! Glad you found this article, even seven years later. Most of the responses you’re reading here are just as appropriate as they were seven years ago, and just as reassuring that it’s not “just you” at all.
I’m guessing you’re still seeing your doctor for regular followup checks – pls mention these distressing symptoms next visit. Doctors really need to know the longterm symptoms associated with this procedure…
Take care, stay safe…
Thank you so much for writing that – it was just great!! 😁 I am 44 and mine was implanted last May. You couldn’t have said that any better then that, so I forwarded this on to my Dr’s office as awareness, for I felt the same exact way! Again, thank you!
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Thanks so much for your note, Nicole! I’m so glad this blog post helped. There’s nothing like asking people who actually live with this device 24/7 if you want to know the real scoop!
After reading everyone’s experience I am so scared about having this done. I have COPD/Emphysema on top of having 25 Percent Heart efficiency. I just got home from hospital after clearing my blockage to the major heart artery with a stent.
I am large breasted and can only sleep on my left side do to COPD etc. I am right handed, so it sounds like they will put this in on the left. Since I sleep on my left side and the sound of how horrible the pain is and wearing the vest, and am totally and completely afraid.
Having said all that I do appreciate knowing these things ahead of time, so I thank you for that information. I hope you are doing well. Karen Scouten.
If you reply to this could you send it to my email drkaren_scouten at yahoo dot com
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Hello Karen – it’s important to remember that every person is different, and every medical procedure is different, and every experience is different. Gathering as much information as possible can actually help – no surprises down the road, plus the better informed you are (about both risks AND benefits, no matter the procedure) the better you can feel about knowing which questions you want to ask your doctors about specific concerns before your procedure. Many of the suggestions in this post, for example, came from women who were uninformed ahead of time – but now wish to save other women from the same lack of awareness by telling the truth as they perceived it.
Knowledge is power! What is actually far scarier is having limited information.
Best of luck to you…
I had my ICD first placed on 4/27/2016. I was told it would be easy & not to worry. I was only 36. In the hospital after the surgery I was screaming in excruciating pain. They didn’t find out until the next morning I had a pneumothorax on the opposite side of my device placement.
Then I go home to take it easy but was still having pain all over my chest. I was on 80mg of prednisone for 7 months before I went to a new Electrophysiologist & found out the 1st doc gave me Pericarditis by using a lead through my heart. So on 10/14/2016 I went back in to fix my device & leads.
Then on 2/17/2017 my ICD fell out of its pocket & into my left boob. Now again I am in & out of pain in my boob, but they won’t move it. They said they don’t know why or how it fell in the first place & don”t want to take the chance with my luck to move it as long as it’s working, just leave it alone until it’s time to change the battery.
Has anyone else had issues? My husband can’t even touch me on that boob, it hurts to lay on my chest, working out hurts as well… I don’t know what to do.
Hi, Shana – what a nightmare you are describing. I’m not a physician so cannot address your specific case, but my understanding is that the majority of implanted ICDs are not problematic (only about 1% of ICD patients report serious complications like pneumothorax, bleeding, lead dislodgement, infection, etc.) Sounds like you unfortunately happen to belong to the list of patients who suffer more than one complication!
The ironic and really crazy-making part of the decision to remove or not remove a device that is not working the way it should is that it can often be considered riskier to go back in to correct the situation than it is to take a ‘wait-and-see’ attitude as your physicians now recommend. (I wrote more on this dilemma here (about a famous faulty leads recall case).
I can only imagine how the average cardiologist would react to being told, for example: your implanted ICD has been recalled by the FDA due to its faulty eroded leads with bare wires exposed – but we’re just going to leave it in your chest….
Hang in there. Best of luck to you…
I have had my ICD for 10 months now, and I have atrial fibrillation, flutters all left ventricle. I have had 3 cardiac ablations 4 cardioversions. The doctor who put this in basically said I will put you on a medication that works if you get this, and then I was unable to get back into him for 6 months!
Having to go in circles with his many different Nurse Practitioners, I was never put on this miracle drug he spoke of. I had asked why and well, it could cause me a heart attack! I switched doctors only to have this one insist I take Tikosyn, which is God awful with death as a side effect.
After my 3rd ablation, the doctor that did it outright told me I don’t need that drug! Then after an echocardiogram, they discovered my own heart beat is stronger than the pacemaker and the pacemaker was only throwing off my heart beat, so they turned it off! Why even have it? I want it out, I feel pain in my heart where the leads are and all the other wonderful pain and discomfort from the object itself. What a joke.
Thank You so much for this. I just had Myomectomy at The Mayo Clinic and they put an external defibrillator in me. My Doctor told me I wouldn’t be in any pain cause he would have me on morphine but that didn’t happen. I was in the worst pain of my life. It’s been almost a month now and still the pain is terrible but I refuse to take oxicontin which doesn’t do anything any way. I have shocks in my left breast as well even though I, to my knowledge, do not have a device hooked up. Everything I have read from other patient says years later they are still in pain or had to have more surgeries because of pain. Had I been given the facts, I WOULD HAVE CHOSEN TO JUST LIVE TILL I DIE EVEN THOUGH I AM ONLY 57 AND MOST IN MY FAMILY HAVE DIED BY AGE 60. QUALITY IS MORE IMPORTANT THAN QUANTITY.
Hello Deniece – I’m so sorry you’re having these issues. At one month, you are still in early days yet (as the WomenHeart list reminds us, 6 months post-op seems to be the turning point). I’m a bit confused by a couple of the points you raise: the link between your myomectomy (removal of fibroids) and getting your defibrillator implanted (unless it was just coincidental that you happened to have both procedures done at the same time?) and also your comment that your device is “not hooked up”. I’m not a physician, but I’m not sure why a defibrillator would be implanted in your chest if it weren’t actually hooked up to your heart. I’d suggest you go back to your physician to discuss this pain you’re having. Although you seem to be having a lot of it, it is actually not true that all ICD patients continue to have pain – just check out the comments below, e.g. Kathy (“I don’t even notice it’s there”) or Phyllis (“I have no problems”) or Susan (“pain is no longer a daily reminder”). Pain is a reality for some patients, but certainly not “all”. You need to have your pain managed (with or without oxycontin – there are other remedies that might be able to help you). You might also wish to seek a second opinion or a referral to a Pain Clinic.
Not respecting the fact that we had private insurance( United healthcare), I had to wait 90 verrrryyyy long days to get my pacemaker/ICD because United healthcare had assumed the same rules and regulations of Obamacare.. The EP sent me home to wait for 90 long days. In the meantime my 89-year-old mother was put into hospice with congestive heart failure. My surgery was scheduled for Monday morning at 5 AM. My mother passed away the prior Sunday evening at 7:54 PM. I spent the last three nights in hospice with her because they thought she was going to pass away that night and they told me not to go home. Obviously I was absolutely exhausted. In the meantime I had a dozen or so anxiety attacks – panic because I was sure I was going to die before she did. I was suicidal.
It would it would have helped me immensely to wear a cardiac vest monitor the entire 90 days. After I was discharged from being admitted from one of my anxiety attacks they did send me home for a weekend with a vest on. It gave me such such relief knowing I was monitored. They should never have sent me home for 90 days without a cardiac vest. It was totally thoughtless, inappropriate and unprofessional for them to do so. Since I was absolutely exhausted after mother died, we postponed my surgery from the Monday after her death until that Friday. I call it “My 95 Days Of Hell.”
Hello Sue – thanks for sharing your experience here. How stressful your mother’s final days must have been for you, given what you were going through at exactly the same week. My condolences to you and your family on your loss.
I don’t know when your ICD surgery was, but I’m hoping you are doing much better these days. My understanding is that the 3-month waiting period between diagnosis and ICD implant isn’t so much an arbitrary waiting period as much as it’s recommended based on research showing that some patients will improve enough with just medications after three months and not even need an ICD after all. And you might be interested to know that the LifeVest is apparently not universally loved by all EPs (here’s an interesting perspective written by my “go-to” EP, Dr. John Mandrola – who, for example, points out some of the known problems with the device seen in some patients – like the problems caused because the inappropriate shock rate can equal the appropriate shock rate. Doesn’t happen to everybody, but you can imagine what kind of anxiety and panic patients might experience having “wide-awake” ICD firings for no reason! Read Dr. Mandrola’s thoughts on this and see what you think. In hindsight, it may have actually not been such a bad thing that you didn’t wear that LifeVest for the full 95 days…
Carolyn, Since they sent me home from the hospital after going to the ER and being admitted, I can only assume my EP believed the risks of wearing the vest out-weighed not wearing it. While on Coreg CR, my Ejection Fraction continued to plummet to 22; my EP said if you put it in one day before 90 days had passed department of justice would “be up his rectum” and “I would get a bill for $150,000.00”. He explained that I was not going to die but other people would die during those 90 days and that’s what the Obama plan had planned on.
I’m confused by some parts of your answer, Sue, eg. what does the Department of Justice have to do with implanting an ICD, and the Obama plan had “planned on” other people dying?
Since my EP is the one who said it, I will be glad to refer you to my EP for clarification. I may be wrong, but I assume the Dept. of Justice regulates Obamacare. If my EP did something against the rules and regs, the Dept. Would be the governmental dept. that enforces and/or penalizes doctors for not following Obamacare rules and regulations.
Had my pacemaker/defibrillator inplanted submuscular in March 2015. I’d say it took a full two months to heal. Now, I don’t even notice it’s there. Well worth it, going underneath the muscle! My device was implanted due to a low ejection fraction, 25%, and LBBB, unknown cause, maybe a virus at some point in my life. I had no symptoms and had asked the doctor if I should get a heart S scan or stress test due to (male) family history of blockage (stents). Turns out my arteries were clear, but I was at risk for sudden death. 53 is way too young! I can’t say I feel much different, maybe slightly more energy, or less shortness of breath when walking/exercising.
My advice again, is to go under the muscle!
Had one for 19 years…saved my life many times. Mine placed sub pectal and I have no problems.
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Good for you, Phyllis! 🙂
Being defibrillated is an absolute nightmare. In my case it happens 3 times in close succession. It knocks me off of my feet and feels like my ear drums will explode.
That sounds dreadful! What does your cardiologist say about this kind of response?
I wish I never had got this defibrillator put in, I had it done Feb 15-2016 and I’m still in pain, an hour don’t go by without me hurting and the doctors don’t know why, I’m always in pain, I wish someone could help me I’m so sick and tired of hurting.
I’m not a physician so cannot comment on your specific case, Victoria, but I can tell you that generally, most patients with ICDs report that at about the 4-6 month mark, things begin to feel more “normal” – so you are right on track for that milestone. Meanwhile, if your pain is mostly in the shoulder area, talk to your doctor about pain medications, and also about a referral to see a physiotherapist for instructions in exercises to help build up your shoulder strength; this helps many patients cope with pain and/or discomfort. Best of luck to you…
I, too, thought I was doomed to constant pain from the ICD. The EP’s response was that he’d NEVER had any patients complain of pain. The PCP said after 6 mos. I should not be having pain. I couldn’t raise my arm very high w/out pain or feeling it just wouldn’t go any further, I couldn’t sleep on my left side at all, had trouble taking off a top over my head.
The pain was a constant reminder of the foreign piece of machinery bulging under my shirt, reminding me of my mortality and my new normal.
I decided it was I who had to work on it–it’s my body, I don’t want to be dependent on pain meds, and I was intent on getting the mobility back. I’ve done yoga-type stretches: slow, easy stretches while breathing slowly, picturing my arm extending as far as I want it to move, breathing to offset any discomfort, gradually moving my arm further past the original obstructing part. I did each movement with intention: that I was going to succeed, returning to my original mobility, all the while accepting the small improvements without judgement or disappointment.
I would practice late at night in a dim, quiet room w/ calming music on, or facing the sunlight towards the back yard: choosing a place of quiet and beauty.
I also had to accept the ICD as a technological marvel that I’ve been blessed to have been given. That I live in the era that medical doctors can offer us a more promising future in spite of our imperfect hearts. I try to express gratitude for the ICD, my doctors and nurses, the heart meds. each and every day. I use my own healing touch when I place my hand on the ICD.
It didn’t happen overnight, but after a year since the implant, arm/shoulder pain is no longer a daily reminder. It’s probably a combination of time AND the stretches and the mind’s intentions. Taking personal charge to remedy the problem is therapeutic.
Please take care, all of you!
I extend my best wishes to all of my fellow heart patients.
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Excellent comments, Susan. I agree – yours was likely an example of how both time and your careful stretches combined to effect relief at last. So glad your initial discomfort has eased. Your description of “expressing gratitude” reminded me of myself in the early days post-heart attack: my friend/counselor Heather came to my home one afternoon with a CD for me, all about guided imagery meditation for heart patients that included a line something like: ‘…imagine the blood coursing happily through your newly-opened coronary arteries” and also a reminder to “…thank your brave little heart for surviving what many do not”.
Interesting. I came here trying to get information on arm pain also. I’ve actually been told we are not to have pain this far along. My implant was on June 30, 2015 from Sudden Cardiac Arrest. I kept putting off going to another doctor thinking time would heal whatever it was. But my Dr said sometimes he has placed it on a nerve. So first stop neurologist. My neurologist said nope. But let’s make appointment to your pain Dr, see what he says. He said let’s get my buddy in here, we talked. He puts a shot in my shoulder 😦 I said it’s more like an ache muscle upper bone thingy. Like when you get one of those flu shots and the next day you think your arm’s going to fall off. You know that kind where the nurse didn’t know what she was doing because flu shots never hurt like that before type thing. I even told the Dr wonder if I fell on my arm and cracked something when I did.
But here I am all y’all saying the same thing. I just wonder. That when they put it in, they check to make sure it works and they ZAP you. Because my Dr told me so. Either that, or they just bend your arms so bad they mess up your rotator cuff. That’s where I got the shot, but only helped 2 days.
Hi Joan – the good news is that it sounds like your concerns aren’t being dismissed (e.g. you’re being sent to various specialists for their opinions). You’re at about the one-year mark post-implant so it’s disappointing that you’re still having this “ache muscle upper bone thingy”. Have you considered Susan’s pain self-management strategies like gentle yoga stretches?
I am having the same and docs don’t know why the pain is there.
Wow I got mine March 11th and still in pain too, left arm always hurts, and to touch it is very painful.
I had my device put in 3/2016. I have a small frame. When they were doing the operation, they damaged my lung in 3 places. I was in hospital for over a month. It was the worst pain I ever felt. I didn’t get a lot of info about the device like how it will feel when it goes off. I’m 8 weeks over it but last night I had really bad pain. I don’t know why. What can I do to see why I had pain?
Rosie, see your physician about last night’s pain so that symptoms can be documented in your medical files. “Really bad pain” is not normal and needs to be addressed. Good luck to you…
My ICD was implanted 5/2015 and I, too, am small framed and deal with pain at shoulder, at the location, sometimes in back of upper arm. It ranges from a dull ache, to tingling, to sometimes just an unexpected sharp jab. EP had no explanation nor had he had any patients who complained of pain after 6 weeks post-op. (?)
Former oncologist was worried the breast cancer of 2001 had metastasized to the bone, but chiropractor identified it as trauma to the scapular, collarbone, shoulder. ICD tech also explained that during the procedure your arm is extended out for a lengthy period of time (I call it crucifixion position) so it will take time for nerves to accept the ICD and to settle down. However, it’s still a big piece of machinery that obstructs the tendons and impacts mobility!
I’ve found doing yoga-type stretches slowly, visualizing the area “opening up”, breathing deeply and slowly is very helpful. For one, you’re doing something for YOU — It’s in YOUR hands to repair, improve, heal. I now have more mobility (raising arm almost over my head) and less obstruction, although I’m convinced I could be a weather forecaster, as rain and snow can be predicted 2 days in advance by the soreness in my arm.
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Thanks for sharing your experience here, Susan – and especially for those helpful tips on yoga-type stretches and visualizations. I used similar guided imagery techniques after my heart attack. So true about weather forecasting…
I had an ICD inserted April 2015 about 4pm. I was informed that it would be the size of a “pocket watch”. I did not expect a 70gram device, approx 9cm x 7cm. The pain post surgery was immense, like it was pressing on a pressure point or nerve. After fainting with pain about 2 hours after insertion, I was given some strong pain relief (I think Endone), but when I asked for a prescription for at-home pain relief prior to going home the next morning, it was implied that I may be asking for other than pain relief and was told that Panadol is usually sufficient and none was prescribed.
So I went home as expected, despite stating that I felt too unwell and in too much pain. I did not cope with the pain once home (faint and nauseous) so phoned the Hospital within 2 hours and asked to be readmitted as I felt so unwell and unfair to my non-medical husband. On discharge the next day my request for pain relief was respected and I took Tramadol 50mg as necessary for 2 days before cutting back to 1 or 2 Panadol only prior to bed, for approx 1 week.
Three weeks post-insertion a long bruised area running along the left side of the devise for about 12 cm was still evident.
I am a small frame person and my ICD causes daily pain especially nearer the end of the day after normal household activities. It is of course painful and tender if knocked by small grandchildren etc. My ICD is very prominent and I have bought clothes to cover it as it I don’t wish to explain to others what the ‘egg’ is under my skin. The Dr who inserted my ICD was dismissive of my situation when I made an appointment to discuss my concerns, saying that I must be the one in 1,000 who may react as I have.
Has anyone else had severe pain post insertion? I felt/feel little understood or supported, and was treated as a procedure not an individual. Yet on getting shingles 6 weeks later, I was offered any pain relief necessary. In my case the shingles pain was nothing in comparison.
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Thanks so much for sharing your experience, Allyson. There are at least two troubling issues here: poor communication and inadequate knowledge of pain management.
It absolutely makes me insane to read of comments like those from your dismissive cardiologist (that “I’m the one in 1,000 who may react as I have”). WHO CARES if you are the one in 2 million who reacts this way? All that matters is that this particular patient is “fainting with pain”!! Aarrrrgh! And your comparison between your shingles pain control experience vs the ICD non-control is telling. Totally unacceptable patient care. Best of luck to you…
I am a 72 year old male and suffered discomfort in the insertion pocket and left breast, my wife got me some stretch sports bras and I found one that holds everything in place and totally eliminated the problem. While it is a bit embarrassing it is worth it.
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Hi Vikketer – if it works for you, and helped to end your discomfort, I say GOOD FOR YOU! Glad you have such a smart wife…
Today is the 25th anniversary of my first ICD implant. Wow, have we come a long way.
But I’m here to tell you ladies we still have a long way to go. 25 years ago doctors didn’t listen to women. They just thought we didn’t handle things (mentally) very well. I complained for 5 years that “the box” (as my children called it) was sitting on my ovary. Doctors thought that was funny until finally my (female) OB-GYN doctor confirmed that indeed it was touching and rubbing an ovary. Not to mention my hip bone on the other side. I begged for years to round the corners of the device for more comfort.
My scar has hurt for 25 years. Today I still dodge children from bumping my left side in any place as I now have 8 scars from battery changes and moving from the left hip area to the left shoulder.
But on a lighter note, I am due for a battery change soon and am comforted that the surgery is much easier (one day outpatient) than the 4 days in ICU that it was in earlier days. Devices do more, last longer, and are much smaller than before. But I think today the main issues are communication and education.
Thank you for sites like this. I wish we had more support groups with doctors included so that we can all come together to make quality of life better for us all.
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Happy 25th Heart-iversary! Wow, you must have been one of the pioneer ICD patients, Kathy. What a journey you have had. Best of luck with your upcoming battery change procedure and thanks so much for sharing your perspective here. Your experience might have been 25 years ago, but COMMUNICATION and EDUCATION are still key ingredients to good patient care.
I feel as though I was lucky to have my ICD implanted. My Cardiologist fought for me to get it even though I was only 4 weeks since my heart attack. Apparently, the protocol was that a patient needed to be 5 weeks since their incident. I do feel as though it is my “insurance policy” even though I hope that I never need it.
The EP docs aren’t as warm and cuddly as my Cardiologists, but I don’t have to see them as often. Not being able to do the telephone checks with a mobile device is just plain ridiculous in this day and age.
And, I wish someone would have told me that my small breasts would be lopsided as well. Reconstruction surgery, maybe?
Thanks for sharing your perspective, Eva. I’ve heard the post-ICD “lopsided breasts” concern so many times – are EPs just not aware of this issue?
I have had nearly constant chest pain for three years, dating from the time I received my device. My doctor does not think it’s cardiac related, then sent me recently to a cardiologist. After various tests, I was told some women DO feel their pacemakers.
Hmm, says my doctor. It must be that women are more sensitive then men!!!! Fancy that! No solutions offered.
Hello Marilyn – near-constant pain for three years is NOT normal, nor is it merely a sign that you might be “sensitive”. Studies have shown that acute and late complications from having a pacemaker implanted are rare, but can affect up to 7% of patients, and some of the complications include events like atrial lead perforation, infection, lead migration, etc. Get a second opinion immediately. Something is causing this pain – you and your doctors need to find out what it is. Best of luck to you…
The comment “Many of us wrongly believe that we are ‘fixed'” is so true. I don’t have an ICD, but this is useful information. There was one cardiologist I saw who suggested I might need one.
I like to tell my women’s heart health audiences to behave as if they are all at high risk for heart disease – there’s absolutely no down side in making heart-smart lifestyle choices for the rest of our lives.
How about letting us know that the ICD just gets the heart to pump in synch – but it does not make you better (will not itself improve your ejection fraction). Being told that – well this should prevent you from dying, now it’s a wait and see game relying on tweaking your meds to see if you’ll improve, and if you do by how much. Hmm – OK – and while I wait this out with my lopsided breast and pain if my kids try to hug me – I really do try to focus on being grateful, but it’s really, really hard.
Thanks for this. It is indeed sometimes so hard to feel grateful, isn’t it? Ejection fraction (the measurement of the percentage of blood leaving the heart with each contraction) is just one measure of heart function. As in many forms of heart disease, our docs can stent us, bypass us, medicate us, zap our wonky electrical circuits – but those interventions will not necessarily “fix” what has damaged our hearts in the first place, often decades earlier. Many of us wrongly believe that we are “fixed” after treatment and are shocked to learn that this may not be the case at all. Best of luck to you, Kelly.