For many patients who have an ICD a beta blocker is an important medicine to strengthen the heart, prevent recurrent heart attacks, control blood pressure and to prevent abnormal heart rhythms. Exercising regularly is an important part in keeping your heart strong. Despite your heart not achieving the rates it did before the medicine was initiated you are still having significant cardiovascular benefit and it is unlikely your heart will weaken because of this observation. It is common to experience a decrease in your stamina when the beta blocker is initiated but that should improve once your body acclimates to the medication.

The answer to your question is not straightforward. SCA accounts for 335,000 deaths annually. 36-81/100,000 out of hospital cardiac arrests are treated by emergency medical services. So many SCA’s are unwitnessed and thus lead to poor outcomes.

Only 6% of SCA survivors live to be discharged from the hospital, so even if they are found and brought to the hospital survivors are relatively uncommon.

Given these considerations it is hard to know whether CPR or emergency services could have changed the outcome. During SCA time is of utmost importance and the quicker someone is found the better their chances of survival. The other variable is what caused her sca some conditions are more treatable and responsive than others.

It is important to recognize that your mother’s situation places you at higher risk and it is important to discuss this consideration with your doctor.

Myocardial infarction (heart attack) is one cause of sudden cardiac arrest.
According to the Heart Rhythm Society 75% of patients who die of SCA show signs of a previous myocardial infarction.

If you have a family history of coronary artery disease, particularly if it was diagnosed in your parents or other first degree relatives (mom, dad, brother or sisters) before the age of 55 that is a risk factor for you. In my opinion an EKG should be a part of your annual exam at least every 3-5 years. Many OB-GYNs are general practitioners but given your family history I would suggest having an internist see you annually to assess your risk and to perform the necessary screening tests not necessarily a cardiologist.

Language concordance is paramount in providing high quality health care to minority populations. Unfortunately far too often there are situations such as those you describe. This is increasingly recognized as a problem and organizations such as CMS/JCAHO are requiring clinics and health systems to consider this issue and to provide better resources. The impetus for enforcing bi-lingual learning materials and staff resources must come from the stakeholders of the health system to ensure this change is widespread.

All of the above. African Americans are at higher risk for many of the conditions above and also diabetes mellitus, obesity, renal disease, and the list goes on. African Americans are also plagued by heath care disparities that manifest as lack of access to heath care providers, no insurance, less likely to receive care by subspecialists, and to receive the latest, newest medications and procedures. These disparities lead to worse health outcomes. That being said, there are opportunities for African Americans to improve their health by exercising more, improving eating habits, and focusing on a healthy lifestyle.

The details of the death of your husband’s father are very important. If in fact he had SCA as a result of a myocardial infarction or heart attack that is very different than if he had SCA without evidence of heart blockages or a heart attack. In any event it is important that your husband have routine annual physical exams that tests him for diabetes, checks his cholesterol, and maintains a healthy lifestyle with exercise and good eating habits. In regards to your children, their risk is largely predicated on your husband’s and your genes. If your husband died suddenly that would place them at a greater risk, The issue of screening children who participate in competitive sports for cardiac abnormalities remains controversial. Overall the risk of SCA is extremely low (chance of occurrence is 1 out of 100,000).

The American Heart Association recommends a more cardiac-specific exam involving an EKG, echocardiogram or stress test for patients (even student athletes) who meet one of these criteria:

Personal history of syncope (fainting) or near syncope, excessive shortness of breath or fatigue, chest pain, hypertension, family history of unexplained or premature sudden cardiac death, hypertrophic obstructive cardiomyopathy or dilated cardiomyopathy, Marfan’s,Syndrome or Long QT Syndrome, an exam that detects a notable pathologic murmur, brachial-femoral delay, Marfan’s stigmata, or hypertension.

I also think it is important to have an Automated external defibrillator at all games.

Your sister’s situation brings up several important issues. Your sister seems to have a lot of trust and faith in her general practitioner which is an important part of her health care. Individuals who have that type of relationship with their physician tend to be more compliant with their medications and adherent to a healthy lifestyle. This is only helpful if her general practitioner is treating her appropriately and telling her the right things to do. With hypertension and borderline diabetes, her general practitioner should be capable of managing these diseases. A specialist is not always needed in these circumstances. Given that she has these risk factors it may be reasonable to refer her to a cardiologist for a cardiac work up if she is having symptoms or is at an increased risk of significant coronary disease based or her risk profile which her GP should be able to discern. If she is not following the recommendations of her GP I think it is unlikely a specialist would be more successful.

This is difficult; denial and is a common theme among many people. Perhaps you can motivate her by telling her how important it is for her to change her lifestyle because you want to have her around to enjoy life with of for her grandchildren or children if appropriate. Using other people is sometimes a good motivator. You need to be willing to exercise with her. She needs to stop smoking, as even one cigarette a day is dangerous. Also you may want to try support groups in the community or with friends. Testimonials are often very influencing hearing other individual’s story. Stay with it despite the frustration, your love and support will help in the end

Your father’s history certainly puts you at risk. Preventative maintenance will be key for you. You should be screened annually for cholesterol, diabetes and hypertension. You want to reduce the number of risk factors that you have for developing heart disease. And since you can’t change what happened to your Dad you must focus on the things you can change. Diet and exercise are important. Heart murmurs are typically fairly common in young patients and shouldn’t be a big concern, That withstanding if your physician is concerned about the character of your murmur a cardiac ultrasound (echocardiogram should be obtained.

I can appreciate your situation; busy with school and not a lot of financial resources, and it can be much more expensive to eat healthy. Try to avoid eating fried foods every day all things in moderation cut it back to 1 day every other week .Baked or steam foods are much healthier. Most college students get into trouble because they snack frequently. Snack on fruits and vegetables instead of candy bars, and potato chips. Trail mix is also a good alternative.

Lastly incorporate exercise into your regular routine.

Not knowing the specifics of your respective test results I would offer the following.

Stopping SMOKING should be the highest priority. This is by far and away the worst thing about your health and should be stopped ASAP. There are now many ways to assist with this including using medication.

Exercise again is important. Start slow with walking a few times a week for 30 minutes and advance to 5 times a week which is currently recommended.

Diet can be an extremely effective way to lose weight, and improve your test results in all categories. Again try starting small cutting out all of the sugared drinks in your diet you will be amazed at the results

Good luck.

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.