Navigating a New A-Fib Diagnosis

Doctor talking with patients
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If you have been diagnosed with atrial fibrillation you may be feeling overwhelmed by now. You’ve probably been inundated with information, some of it sounding a little scary, and with treatment choices that all sound undesirable. Your doctor may be urging you to make decisions you don’t feel ready to make. And if your arrhythmia hasn’t been completely controlled yet, you may be feeling lousy and in a less-than-ideal state to be making important decisions.

So let’s take a step back and put things into perspective.

Understanding Your Diagnosis

Atrial fibrillation is a very, very common arrhythmia, and most people with this arrhythmia are leading completely normal lives. When you go grocery shopping on a busy Saturday, without knowing it you will probably encounter a dozen people who have atrial fibrillation. When you watch your favorite football team on Sunday afternoon hundreds or even thousands of those cheering fans have atrial fibrillation. You, too, will soon be back into the normal flow of life.

That’s the plan.

More specifically, the plan is twofold: First, to make sure any symptoms you have with atrial fibrillation are eliminated or minimized so that you can get back to a normal life. Second, to minimize your risk of having a stroke. Both of these goals are entirely achievable. You should not merely hope they are both achieved, you should expect it and plan on it.

To get there, you will indeed need to make some important decisions, and you will have to initiate some treatments. You probably will need to begin taking a new medication, or perhaps a few of them. You may need to have a medical procedure or two. You may have to make some lifestyle changes for the sake of your health. But you are going to get past this time of decision in a relatively short period of time - a couple of months, a couple of weeks, or even a couple of days.

So dealing with atrial fibrillation is a serious matter and will require a significant effort on your part. But soon, you will be back to living your life normally.

How to Approach Your Decisions

You know you have some decisions to make: Which treatment should you use to reduce your risk of stroke? Should you opt for the rate control approach, or the rhythm control approach, and which treatment options within each of these approaches are the best for you?

The “right” decisions will depend on your instincts, your inclinations, your life experience, your expectations, and other things only you can bring to the table. They will also depend on the state of your health, your medical history, and other, sometimes subtle, medical considerations for which you will have to rely on your doctor. In other words, the “right” approach to treating your atrial fibrillation should not be dictated solely by either you or your doctor—it should be a shared decision.

Finding the Right Doctor

If you are having a brain tumor removed, finding a surgeon with an excellent bedside manner is merely a nice-to-have. What you really want is a surgeon who can get the tumor out, even if he or she is an ass. That is not the case with atrial fibrillation.

You need a doctor who (in addition to really understanding atrial fibrillation) is thoughtful, empathetic and a good communicator. This is because the two of you, together, need to decide on the optimal treatment approaches. If you can’t communicate, you can’t cooperate in the way you will need to.

If this doesn’t describe your doctor, then you need to get another one.

What Kind of Doctor Do I Need?

What level of expertise should your doctor have? If you think you are interested in considering the rhythm control approach, then you should see a heart rhythm specialist—a cardiac electrophysiologist. These are the doctors who are adept at managing all the treatment options and juggling the risks and benefits of the various antiarrhythmic drugs, procedures, and devices that might possibly come into play in restoring and maintaining a normal heart rhythm.

You don’t necessarily need to start with an electrophysiologist, however. A regular cardiologist and even a good internal medicine specialist (an internist) should be able to guide you through a discussion of the major options and to help you decide on a treatment approach. They should also be able to handle anticoagulant therapy, manage the treatments necessary to control the rate of your atrial fibrillation and perform cardioversion if needed. For many patients with atrial fibrillation, that’s all that is necessary.

But if you are considering an all-out rhythm control approach, which is likely to involve chronic antiarrhythmic drugs and/or ablation, you need a referral to an electrophysiologist.

Your Doctor's Visit

Your atrial fibrillation may require immediate therapy when it is first diagnosed. This is perfectly fine, and even necessary in many cases. If the atrial fibrillation is very rapid, or is producing significant symptoms, or is causing cardiovascular problems, then immediate steps will be needed to either control the heart rate or restore a normal rhythm (that is, cardioversion). There’s not much you can do to prepare for such a doctor visit. You have an acute problem and it needs to be dealt with.

But once things are stabilized it becomes time to make the long-term decisions about treating your atrial fibrillation. To do this, you will need to prepare for a substantial discussion with your doctor.

Preparing for Your Doctor's Visit

Before having “the discussion,” prepare. Read everything you can about atrial fibrillation and its treatment options.

To organize your thoughts you should consider making a chart, one with four columns. The first column lists the names of the treatment options you think you might be interested in, or that you want to know more about. This column might contain such things as “stroke prevention with Coumadin,” “stroke prevention with a NOAC drug,” “rate control with drugs,” “rhythm control with drugs,” “rhythm control with ablation,” or any other treatment options you might especially want to explore.

The second column lists the advantages of each treatment that is especially important to you; the third column lists “cons” for each treatment; the fourth column lists the questions you have about each one.

The most important column is probably the one with your questions. Your goal for your doctor visit will be to have each of these questions fully addressed by your doctor. Two questions you should ask for each treatment option are, “Why might this option be right for me?” and “Why might this not be the best option for me?” Another might be, “Who, if anyone, would you refer me to for managing this treatment?”

Once you have done all of your preparatory research, you may find you are leaning strongly toward one treatment approach or another. Or you may find you are completely up in the air. Either way, it’s OK. In this preparation phase, you are not making a decision; you are merely preparing yourself to hear your doctor’s explanation of the options (and to better understand the lingo he/she may use) and to be able to consider his/her recommendations from a reasonable foundation of knowledge.

The Doctor's Visit

You should have clear goals for the doctor visit itself. Among these should be:

  • You want to hear the doctor’s own explanation of the treatment options available to you.
  • You want to hear your doctor explain why, in your own particular case, certain options ought to be either set aside or more strongly considered.
  • You want to have all your questions answered.

Despite all your preparation it is easy to be overwhelmed when actually seeing your doctor. You should probably expect to be overwhelmed.

To manage the “overwhelm” you should do one or both of two things: You should take a second pair of ears with you—a trusted loved one or acquaintance who can listen carefully and objectively to the doctor’s explanations along with you, and help you digest it all later; and/or you should record an audio of the visit. (You will need your doctor’s permission to do this, but if he/she declines, that’s a good sign that you may not have the right doctor.)

After the Visit

By the end of the visit, you may be perfectly clear in your own mind which treatment approach you want to use. That’s great. But more likely you will want to take some time to think about it. That’s perfectly fine, too.

The process of “thinking about it” should include going over your prepared list of questions after you’ve seen the doctor, and making sure you are entirely clear on all the answers. It will be helpful to listen to the recording you made or to discuss the matter with the friend who accompanied you to your doctor visit. If you find there are still open questions, then call or email your doctor for clarification (preferably within a day or so, so the conversation is still clear in his/her mind).

After you’ve taken these steps, you will be ready to make your decisions on the optimal approach for managing your atrial fibrillation.

Seeking a Second Opinion

Getting a second opinion from another doctor may be helpful—or may be unnecessary. It largely depends on how comfortable you are with your relationship with your doctor, and on the decision you’ve made regarding the treatment for your arrhythmia. Don’t worry about hurting your doctor’s feelings, however—doctors should expect (and even encourage) their patients to get second opinions for tough medical decisions.

One case where a second opinion ought to be the rule rather than the exception is when you’ve decided to have an invasive procedure to treat your atrial fibrillation—ablation therapy, or the insertion of a left atrial appendage closure device. The state of the art in these cases is in flux, and even electrophysiologists disagree on when these kinds of procedures should be used.

You will want to make sure the procedure in your case is really a reasonable idea, and that you’re not being swayed by an evangelist. If two different electrophysiologists agree that the procedure makes sense, then it’s far more likely that it actually does.

After Your Decision

Once you have considered all your options and made your treatment decisions, and the treatment actually begins, keep in mind that you haven’t actually closed any doors.

People often switch from a rhythm control approach to a rate control approach if one or two attempts with an antiarrhythmic drug fail, or if an ablation attempt is unsuccessful. And it is also possible that a rate control strategy may not completely alleviate your symptoms, in which case it is entirely possible to switch to a rhythm control approach. So your initial decision does not necessarily need to be your final decision.

For most people, however, the treatment of atrial fibrillation goes pretty smoothly once a treatment approach is decided upon, and they are soon back to feeling well. Even if treatment does not go completely smoothly, and requires a few different attempts, you and your doctor should persist until the goal—and your expectations—are met.

Trying different treatments and even different treatment approaches are sometimes necessary with atrial fibrillation. But you should not change your ultimate expectation, which should be to lead a normal life with minimal symptoms.

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