One of my Mayo 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
- 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