It is a common misconception that only the elderly receive pacemakers and defibrillators (ICDs). Some people are born with cardiac abnormalities or diseases, requiring a pacemaker soon after birth. Some people develop or discover problems at a very young age, also requiring a pacemaker. The point here is that no one is "too young for a pacemaker."
When dealing with something new and potentially scary, it is comforting to know that you are not alone. There are resources available for all people with pacemakers, some created for specific groups, like young people and women.
Where can I find information on pacemakers?
First, here is a little information on pacemakers and pacemaker implant surgery from Mayo Clinic to ease your mind. Pacemaker surgery is not the same as open heart surgery. It is much simpler and less invasive. The pictures below show an example of the progression of incision healing, from one day after pacemaker implant surgery to six months afterward. You will undoubtedly have questions that Mayo Clinic's pacemaker introduction page does not answer. Google is an extraordinary resource. You can literally type in a question the way you would ask it verbally, and Google will come up with medical pages, blogs, and question/answer websites for you to browse. A great deal of information can be gained this way, but remember to pay attention to your sources because not all are reliable. Generally, government websites, medical journals, and some personal accounts and blogs are trustworthy resources.
Support for people with pacemakers
Facebook receives bad press regularly for its privacy practices, understandably so, but there is a good reason to put up with it. Facebook offers a very large community of people available at your fingertips. Keep your privacy settings at the highest standards available, check on them for anything new periodically, and you should be fine. There are multiple chronic illness support groups, from heart disease, to autoimmune diseases, to gastrointestinal disorders. These groups offer more than just empathy, they offer answers and a feeling of belonging.
If you have a Facebook account or are willing to create one, there are several pacemaker support groups open to you. Many people in these groups will be able to answer the majority of your questions about having an implanted pacemaker. Other newbies in these groups may also benefit from your questions. You can scroll through older conversations in the groups to get answers to questions you may not even have considered yet. For instance, how do you dress yourself after surgery? The answer is very slowly, and possibly with help. It is difficult to get t-shirts on soon after surgery because you are not supposed to lift your arm (on the side of your body where the pacemaker is placed) for weeks after pacemaker implantation. So, button-down shirts and wide-neck shirts are essential during this time.
In these groups you can see pictures of real people with implanted pacemakers and defibrillators and you can see pictures of the devices themselves. They are actually quite small compared to older versions. You'll see handy tips on how to get through the first few weeks after pacemaker surgery, what surgery is like, and you'll get to read other people's experiences with medical problems and life with a pacemaker. These are outstanding Facebook group resources:
- Young Pacemaker Patients & Supporters
- You're only cool... if you have a pacemaker!!
- Living With A Pacemaker!
Facebook is not the only option for pacemaker support.
- The Pacemaker Club is a support group for recipients of pacemakers and their loved ones. It is a place where people may share their questions, concerns, and experiences through forum posts, allowing other members to comment, as well. Membership is free.
- Wired4Life is a non-profit organization, creating a community of support for women with pacemakers, defibrillators, and replacement valves. A one-year regular membership fee is $20.00, a small price to pay for a safe environment to share difficulties and successes after implantation. A one-year Wired Angel membership fee is $40, an option that allows an individual to gift a one-year membership to someone else who cannot afford it. Wired4Life also sells clothes and gifts with the Wired4Life logo at Cafe Press.
- Life Beat, by Boston Scientific, a cardiac device manufacturer, is one example of reliable online support and information for people with pacemakers and other cardiac devices. Registration for Boston Scientific's online newsletter is simple, free, and available to anyone.
- Ask your doctor or the patient advocate of your hospital if they know of any local pacemaker and defibrillator support groups.
- Check Meetup for local pacemaker and defibrillator support groups. Dependent on your condition(s) you may want to expand your search to chronic illnesses or your specific disease.
A few final tips on living with a pacemaker
- Do not let your pacemaker rule your life. It is here to help you live a full life.
- Keep your scar out of the sun. Once you are allowed to moisturize it, use 100% pure manuka oil, or another pure, natural moisturizer. This can help it heal much more nicely, which reduces scar tissue and makes it less visible.
- Follow the rules set by your doctor after surgery. There are limitations for about six weeks. They exist to keep you from accidentally damaging the pacemaker leads' attachment to you heart, which would require another surgery to fix. The limitations will end and you will be able to get back to your normal routine.
- If you're not satisfied with the care you're receiving or feel that you do not have enough information on your condition, check out You Can't Be Your Own Doctor but You Can Be Your Best Advocate to make the most of your medical experience by empowering yourself. You are your own best advocate.
Melissa Logan - Melissa Logan enlisted in the U.S. Navy as a Cryptologic Maintenance Technician after graduating from high school. After six years, she ...
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