Interview with Howard S. Farkas, PhD on Adjusting to your ICD

For people concerned about getting a shock, relaxation techniques such as deep breathing and progressive muscle relaxation may be helpful in coping with anxiety that often comes with such anticipation. Many commercial cosmetic products are very effective in concealing scars. But there are also coping mechanisms that are appropriate for both problems. For example, people have a natural tendency to focus on the negative aspects of a situation, without balancing them against the positives. Healthy coping for any concern, including those related to ICD adjustment, includes the ability to put a problem in its proper perspective and remind yourself of the positives as well. In this case, remember why you have the device in the first place: it’s there to save your life.

Your response to the shock is a good example of the type of healthy coping that I referred to above. Many patients report that it removed any doubt that they may have had about whether the ICD would actually work when they needed it, and they felt more relaxed afterward. In addition to that, some patients report that it was a relief when “the other shoe finally dropped” and they realized that the anticipation of what a shock might feel like was much worse than the actual experience.

I think you’re handling it exactly as I would recommend, as long as you’ve communicated clearly to her that you’re there to listen if she changes her mind and wants to talk. Everyone needs to deal with things in the way and at the pace that works best for them. It may be different from how you would do it, but if it works for her, you can’t impose your own timing or coping methods on her. I would add that, as you appear to realize, sometimes people just need someone to listen, not to fix the problem. Unless she asks for advice, don’t give in to the urge to offer it. Usually, that has more to do with the need of the helper to “do something.” Offering a sympathetic ear is actually doing a lot.

In our clinic, we haven’t really had enough experience yet with the remote monitoring systems to be able to comment on adjustment patterns over time. But what you describe sounds a lot like how many people typically react to getting an ICD, with the initial reluctance, the daily thoughts about it, and then accepting it as part of their life.

Actually, our study didn’t look directly at anxiety at all. We used preoccupation, defined as daily ICD-related thoughts, as a surrogate measure of adjustment. We felt this was a more useful metric because adjustment difficulty could be manifest in a variety of ways, ranging from clinically significant anxiety or depression, to simply worried thoughts. It’s also a simple and practical way for providers to do a quick bedside assessment of psychological adjustment during routine follow-up appointments.

Thank you for asking this, Jennifer, because this is the most important message I can offer to you and anyone with an ICD who has similar concerns. You view the scar or bump as a source of shame and something to hide from others. But this discounts the positive, life-affirming statement that having the device represents. That scar is your declaration that you chose to do something that quite likely will extend your life so that you can enjoy doing those things that make life worth living – like going to the pool with your kids! Avoiding those activities defeats an important part of the purpose of having an ICD. If anyone asks about the scar, you can tell them exactly that. After you conquer the pool, take that spaghetti-strap dress out of the closet and go for a whirl on the dance floor!

I agree with the ideas that Dr. Arthur Barsky talks about in his book, Stop Being Your Symptoms and Start Being Yourself. He takes the approach that how you think about your symptoms, pain, or chronic health condition has a great deal of influence over the degree of discomfort and distress that you experience from it. In fact, that difference can be significantly greater than the effect of prescription medications on those feelings – without the side effects! The book teaches coping mechanisms that are effective in helping you change the type of thinking you describe.

Support groups can vary widely in how they are run and what the members discuss, but the common element they all offer is the opportunity for a group of people to discuss a concern they all share. This can be very helpful when someone feels that “unless you’re in my shoes, you just won’t get it.” That may not be true, but the perception of feeling understood is critical to anyone dealing with a concern. In our support group, we have found that the most helpful aspect is for new ICD recipients, or those who had their first shock, to meet and hear from the “veterans” about how they’ve managed and gotten through some early difficulties that they are now experiencing. For their part, the “veterans” get a lot out of telling their story and being able to help.

This question was similar to Linda's who wrote: "I'm a 37 year old woman with an ICD. At times, I find the ICD very painful and sore. Is this something that is normal and do you think it could get better? I have had the ICD for one year."

I'm going to try to respond to both of these here. First, I hope you have shared these concerns with your physician who implanted the device and oversees your follow-up care. But in general, tolerance of pain and sensitivity varies a great deal from one individual to the next. According to our EP nurse, Julie Schmidttiel, this type of experience is fairly uncommon. In her experience, it seems to be more common among women and thin people than men or people who have more soft tissue in that area. It may occur if the device is pressing against a nerve, or if a nerve was in some way affected by the procedure. Some people complain of sharp shooting pains and others may be more sensitive to touch. If the pain is frequent and disruptive of your normal activities, you may want to get a referral to a pain management specialist. Chronic pain management is a growing specialty area for many clinical health psychologists. If it is transient, and is not severe, the brain tends to accommodate over time in the same way that people who live in the city stop hearing the noise of traffic. It would also be a good idea to keep a log to see if there may be a pattern or correlation between certain activity and pain. Sensitivity to exercise, touch, or spontaneous pain all may point to different causes.

Studies suggest that for most people, it’s not having the ICD itself as much as the experience of shock that contributes to psychological distress. For those who have experienced an ICD storm, which is more than two shocks in a 24-hour period, that distress is multiplied and symptoms of post-traumatic stress disorder (PTSD) are fairly common. The experiences you describe – nightmares, crying, exaggerated startle reaction, and avoidance of potential triggers – are all very consistent with the diagnosis of PTSD. As opposed to typical adjustment reactions, PTSD does not usually go away with time. Treatment for PTSD requires professional counseling, and the approaches that show the best results use a combination of cognitive behavioral techniques such as exposure (the opposite of avoidance) and stress inoculation (anticipating trigger situations) to overcome the symptoms. You can find a referral in your area by going to locator.apa.org and looking for a therapist who specializes in the treatment of PTSD.

Sorry I can’t send you the study – the version summarized in the SCAA newsletter was a poster presentation at a national cardiology conference. But we do hope to publish a new analysis using a larger set of data in the future.

The kind of daily awareness you describe sounds very much like what we are referring to in our study. One way to look at it is to compare it to how much you think about other body organs. Do you think about your pancreas or liver on a daily basis? Probably not, unless you’re having a problem with it. Similarly, if you’re not having any problems with your ICD or your heart, there’s no reason to spend any mental energy on it. As you correctly point out, it’s all how you think; life’s too short to spend time, energy, and focus on things you have no control over. Instead, trust that your device will work as designed, and if it needs your attention, it will let you know. Meanwhile, focus on enjoying life.

This is another subject where I consulted with the nursing staff here at Northwestern. I am told that this is very common when there is direct pressure on the site of the incision and device. It’s really just an issue of comfort, though – it does not affect the workings of the ICD. Any extra padding can help prevent or relieve this discomfort. Some people even use padding for their seat belts in the first few months after implant. If you’re placing any heavy load directly over the device, it should be padded, especially when you’re in motion for a long period, like on a hike. Naturally, it would be best if you can avoid carrying a load over that spot in the first place.

It’s very natural that not knowing what’s causing the shocks would cause concern, but my nursing colleagues don’t think medication would be the answer. The best course would be to find out what is causing it. There is a reason– it’s just a question of figuring out what it is. If he is very active, the detection threshold on the ICD may be set too low for his level of activity. In such a situation, the normal speeding-up of the heart rate during exertion may be read by the device as an arrhythmia. Rather than changing your dad’s activity level, they may simply change the device’s detection level. I would recommend that your father see the electrophysiologist who implanted it, or if that’s not possible, any EP who is nearby. Beyond that, he really should be going in for follow up visits every three to six months. If he lives in an area that’s too distant to go in for regular appointments, he may want to ask about getting a remote monitoring system which will allow interrogation of the device without a face to face visit.

In our clinic we’re just beginning to enroll patients in the remote monitoring program so we don’t have enough experience yet to see clear patterns. Our patients now have a choice of using it or not, and after a 3 to 4 month adjustment most seem to get used to it and like the idea of not having to come in for their appointment and choose to continue with it. But, not surprisingly when you have a great nursing staff like ours, some people prefer the face to face contact and personal connection that the visit allows.