Talk to Your Pacemaker Doctor

Doctors speak a language all of their own, and it can be nerve-wracking to have an appointment with a physician and then not understand the clearly important information he or she is trying to tell you. Here are our 10 steps (and some lingo).

1. Write down your questions, even if you are positive you will remember them. There is something about being with a doctor in a hectic clinic that makes your thoughts scatter.

2. Write down the answers the doctors tells you or any other information, like a drug name or the name of a condition. If you can’t spell it, ask. If you can’t even tell what he or she said, then ask, “How is that spelled?” Believe it or not, you won’t be the first person who takes notes in a doctor’s appointment. Doctors do not get upset about that.

3. Learn as much as you can about the lingo of your condition and treatment.

4. Ask the doctor if he or she can recommend some good websites. Contrary to popular belief, not everything on the Internet is good information. Many folks rely on Wikipedia to provide medical information, but some of that information is not accurate. Ask the doctor about special sites. In general, these are reliable sites: Centers for Disease Control and Prevention, FDA, the Mayo Clinic, and the Heart Rhythm Society.

5. All of the big five pacemaker manufacturers maintain large websites with information specifically written for patients. These sites offer some general information and some product specific information. Find out from your doctor what company your device is made by and check out the site. The answer will be one of these: Medtronic, St. Jude Medical, Boston Scientific, Biotronik, or Sorin. Just Google the company name and check out the site.

6. If you want to search medical literature (this can get a bit hardcore), check out PubMed, which is a database run by the National Institutes of Medicine in the U.S.

7. Get to know the folks at the doctor’s office or clinic. Many times, there are knowledgeable staff members who can answer your questions and who may not be as rushed as the doctor. If you can find that nurse or staffer, take advantage of his or her knowledge.

8. Many companies publish materials expressly written for patients. Your doctor may have some of this material in the office but may not mention it to you. Ask if there are patient brochures or if the pacemaker companies have provided any information.

9. Pacemaker companies have representatives wherever their products are sold. If you get a chance to meet or get to know your rep, he or she can be a real asset to you. First of all, sales reps in this industry know a great deal about pacing and cardiac conditions–more than enough to answer most basic questions. Second, they may be able to get special patient brochures, DVDs, or other materials for you. (Your rep may be present during implant or follow-up visits.)

10. Don’t be afraid to sound ignorant. You’re not, really, but sometimes we can feel a little foolish asking very basic questions to highly specialized individuals. Your physician and clinical team are educated in pacemakers so they naturally know them better than you. But nobody started out an expert. Swallow your pride and ask what you want and need to know!

 

Lingo

A heart that beats in an abnormal rhythm is said to have an arrhythmia (sometimes called a dysrhythmia) which means the same thing as a rhythm disorder. This is not a problem with the heart’s pumping system, it’s an electrical disorder. That’s why some specialists you may deal with are known as electrophysiologists.

The pacemaker system consists of the device that is implanted in your chest (actually known as the pulse generator but often called the pacemaker and, in slang terms, the can). One or more wires plug into the pulse generator in the top portion, called the header. These wires are called leads. If you have a defibrillator, one wire will be a defibrillation lead.

So do you have a pacemaker or a defibrillator? A defibrillator shocks or defibrillates a heart that beats so rapidly it can no longer pump effectively. Every defibrillator on the market today has a built-in pacemaker, so if you have a defibrillator (sometimes called an ICD), you have a defibrillator with a pacemaker.  Pacemakers help pace a too-slow or erratic heart rhythm and they do not shock.

There are many types of arrhythmias. Those that start with the term tachy are too-fast rhythms, and those that start with brady are too-slow rhythms. The most extreme form of a tachyarrhythmia (any too-fast rhythm) is fibrillation. Fibrillation is usually described by the chamber where the arrhythmia originates, that is atrial fibrillation starts in the atrial regions while ventricular fibrillation starts in the ventricles (lower chambers).  This does not mean the rhythm is limited to that chamber–if you have atrial fibrillation (or AF or A-fib, as it is also known), the too-fast rhythm originates in or near the heart’s upper chambers (atria) but can also affect the ventricles.

 

 

 

PDF24    Send article as PDF