If you just suddenly got the news that you might need a pacemaker, you are going to find out two things. First, it's a big decision. Second, no one is really out there trying to help you make that decision. Your doctor may advise you to take a few days to "think about" getting a pacemaker. But what exactly should you think about? You're going to find out there is not a whole lot of information available to the general public. The information that exists is mainly geared to doctors. So how do you make a decision.
There are three big mistakes you can make when considering a pacemaker.
The first mistake occurs when people try to make the decision without doing any research or getting any facts. Granted, there may be situations where you could need to get a pacemaker or defibrillator immediately; but these would be pretty rare. In most cases, you should have the freedom to take a few days or weeks to think about it without compromising your condition.
That being said, how exactly do you do research? You can go online and look at pacemaker-related sites but many times this information can be more confusing than helpful. A great resource are the pacemaker forums online. Just Google pacemaker + forum (or any keyword + forum) and you will turn up the current most active forums discussing this topic. While you may not get the most scientific information from forums, you will be able to "talk" online with real people who have pacemakers and were once in the position you're in now.
The second mistake most people make is that they do not ask specific questions of their doctor. Now this is understandable, because if your doctor just suddenly tells you that you might need a pacemaker, you probably don't know what to ask! If you have serious unanswered questions, make another appointment to see your doctor. Consider your physician as a consultant and adviser and get your questions answered.
When I say "specific," I mean that you should control the conversation. Most of us let the doctors do the talking, but doctors can be busy individuals who are not as sensitive as they could be to your particular concerns. You must know the real, medical name of what is wrong with your heart. Ask the doctor to spell it (or hand him or her a notepad and ask that it be written down). Do not let yourself be intimidated. Just because you're unfamiliar with these names today does not mean you can't learn about them.
You need to know the device the doctor is recommending. Is it a pacemaker or defibrillator? Now this question is a bit tricky in that every defibrillator contains a built-in pacemaker (but not the other way around). The point is, you need to know if your device is going to be the kind that might shock you (defibrillator) or not shock you (pacemaker). There is a third kind of device called a CRT system. If your doctor tells you that you need CRT, ask the same question again: is this a pacemaker or defibrillator? (CRT pacemakers don't shock, but CRT defibrillators do.)
That's it. Two questions. But using these questions, you can do research on your cardiac condition and the device the doctor recommends. There are far too many people walking around with pacemakers who never got those questions answered--and who may not even know them now!
If you have other concerns of your own, add those to the list and be sure and get a good, clear answer from your doctor. You may want to know when and where the pacemaker surgery is done, how long it will take, the risks of surgery, and so on.
The third mistake you can make when considering a pacemaker is not finding out who is doing the actual pacemaker implantation. Pacemakers are implanted in the upper chest in a procedure known as "minimally invasive surgery." However, all surgery has risks attached to it.
Ideally, your pacemaker should be implanted by a physician who does a lot of these implants with good success. So how can you find out? Ask! Your physician may be the one doing the implantation. Ask how many of these surgeries he has done a year and what kind of success he has had. If he does less than 10 implants a year, he is probably not as experienced at this kind of procedure as you would like.
Many doctors will refer you to another doctor for the actual implant. Find out how many such implants the physician doing your operation has performed. More is better. You can even call the hospital where your surgery is likely to be performed and ask how many pacemaker people are treated there every year.
Why is more better? The more frequently a doctor performs a surgery, the more skilled he or she becomes at the nuances of that particular operation. The more pacemaker patients a hospital treats, the better prepared they are at dealing with pacemaker-related concerns. If you are not happy with the physician your doctor recommends, you can tell the doctor that you would like the surgery to be performed by somebody who does this sort of operation very often.
Pacemaker implantation is considered "routine surgery," but it is not necessarily a common operation. Some hospitals probably do very few (or even no) pacemaker implantations at all. Those are the places you do not want to have your operation, even if it's a world-class hospital right next door to you. Find an experienced pacemaker implant team-or you can also ask your physician to find one for you.
If you hit a brick wall in this area, contact the Heart Rhythm Society at hrsonline.com to learn more about doctors who specialize in this type of work.
That's it. It is important for you to know the exact, medical name of your heart condition and exact name of the type of pacemaker or defibrillator you are being asked to consider. Use that information to do some research on your own: look things up online and while you're there, check out the forums to talk to other pacemaker people. Last but not least, make sure your implant team is experienced in pacemaker or defibrillator implant surgery.
Should you get a pacemaker? I'm not a doctor so I cannot tell you. Every medical procedure, even the simplest, has risks and benefits. It's a big decision, but it's one you can make with the help of your doctor and with a little bit of research!
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