We are not aware of any ICD support groups in the Rhode Island area. We would suggest that you contact your local health care provider or hospital to inquire about the availability of a local support group. In the meantime, you should contact your primary care doctor and/or your cardiologist to discuss your concerns.
There are published guidelines that outline the indications for ICD implantation which are based on data from large scale clinical trials. Most of these studies are done in patients with coronary artery disease or heart failure who have left ventricular dysfunction (weakened pumping function) as defined by an ejection fraction of < 30%. The ejection fraction is a measurement of the portion of blood ejected with each heart beat. A "normal" ejection fraction ranges between 55-70%. Some individuals are born with genetic abnormalities that predispose them to sudden cardiac death (SCD). Although these individuals have normal heart muscle function, they are still at risk of dying suddenly and generally benefit from having an ICD implanted. So, as you can see, there is a broad spectrum of people who qualify for an ICD and not all of them have "heart damage".
Exercise is an important part of heart health, even in individuals with "heart damage". I would suggest that your speak with your cardiologist about your specific condition and what type of exercise program would work best for you. It might be helpful for you to participate in a cardiac rehabilitation program or cardiac wellness program, where trained professionals can assist you in returning to a more active lifestyle in a monitored environment. This will help build your confidence and may make you less nervous about participating in the activities you enjoy.
There are three major biomedical companies in the U.S that manufacture implantable cardioverter defibrillators (ICDs) – Medtronic, Boston Scientific and St. Jude Medical. There are also biomedical companies in Europe that manufacture ICDs. The cost can vary depending on the type of device, but it is typically covered by most insurance companies.
The ICD – in and of itself – does not restrict sexual activity in men. The one main precaution to take is to make sure that you maintain your heart rate below the rate cutoff (detection zone) of the device during sexual activity. You should consult your physician for specific information pertaining to your device settings and to determine if sexual activity is permitted with your clinical condition.
The ICD has been evaluated in numerous large-scale randomized clinical trials and has been shown to be the best known treatment for management of life-threatening ventricular arrhythmias. Antiarrhythmic medications and "catheter ablation" procedures can be used in addition to the ICD to help minimize recurrent arrhythmic events.
It depends on the type of contact sport your are considering. We suggest that you contact your implanting physician for further recommendations.
You may want to explore other possible causes for your nausea. It is possible that your symptoms are due to some other condition. You should contact your primary care doctor and/or cardiologist to review your symptoms.
Occasionally, some patients may experience reduced blood flow or even a blockage in the blood vessel where the ICD lead(s) reside. This can result in swelling and/or discoloration of the upper arm or the entire arm on the same side where the ICD is implanted. This typically occurs within days or weeks following the implant and is diagnosed by an upper extremity "ultrasound" (a sound wave evaluation of the blood vessels in the arm). Treatment usually includes elevation of the affected arm and a daily blood thinner (warfarin) taken by mouth. Eventually the body develops new blood vessels to allow the blood to flow around the blockage and over time, the swelling resides.
Thoracic Outlet Disorder is a completely different disorder and is defined as: A group of distinct disorders that affect the nerves in the brachial plexus (nerves that pass into the arms from the neck) and various nerves and blood vessels between the base of the neck and axilla (armpit). For the most part, these disorders have very little in common except the site of occurrence. The disorders are complex, somewhat confusing, and poorly defined, each with various signs and symptoms of the upper limb. Source NIH. Obviously, any time you develop any new or concerning symptoms you should contact your physician to be evaluated.
You should compile a list of questions for your doctor so that you don't forget to ask something while you are in the office. However, your doctor will probably ask you several questions about your general health, your medical history, any new symptoms you may be experiencing, what your activity level has been like, and what medicines you are taking, for example. Periodic echocardiograms are helpful to evaluate the status of your heart muscle function, but often times, how you have been feeling is an important indicator of how you are doing. You should be sure to bring all your relevant medical records to the visit, including the results of any prior testing and a complete list of your medications.
Sounds like you have a very active lifestyle and have several questions about the "dos and don'ts" with your device. Unfortunately, we are not able to discuss or make any recommendations regarding personal situations in this forum. However, before you embark on any of the activities you have outlined, I would suggest you discuss your concerns with your implanting physician regarding what activities they think you can safely undertake with your ICD; particularly as they are most familiar with your clinical situation.
There is no issue wearing a pedometer if you have an ICD. A pedometer is a non-electrical device which uses a pendulum to count footsteps. There is no electrical contact with the skin and it will not affect pacemaker nor ICD operation. (Source: Medtronic Tachy Technical Services)
Unfortunately, a shock is not the most pleasant sensation. Many patients describe an ICD shock as having a “horse kick them in the chest” or “getting hit in the chest with a baseball bat” – meaning that the shock is of significant intensity. However, the shock is truly like a lightning flash and is over and done with before your brain has even registered what has happened. It is unlike “hitting your knee on the coffee table” where it hurts for several minutes. Though the shock is uncomfortable for a split second, there is no lingering discomfort afterward. The most important thing though is that the shock most likely saved you from a potentially lethal heart rhythm abnormality. If you receive a shock, you should follow your clinic recommendations for follow-up.
In most instances a call to your device physician or nurse is all that is needed. They can recommend a plan of care for you. In an emergency situation, or if you feel poorly after receiving a shock (chest pain/pressure, shortness of breath, ongoing palpitations) you should call 911 and report to your local emergency room. It is important to have an “action plan” in place so that you and your family/friends/co-workers know what to do and whom to call if you ever receive a shock.
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