That little beep could be telling you something

Last Thursday night while lying in bed, I heard a faint beeping sound. We had been out earlier in the evening with friends. While I usually try to eat healthy, I had indulged in too much fried food and I had two glasses of wine, so I was feeling heavy and sluggish. Without worry and in that dreamy, almost asleep state I tried to figure out where the sound was coming from. As it was one of the rare warm nights in the Bay Area and our window was open, I figured it must be a truck backing up somewhere in the distance and the sound just traveled. Now that I had the noise categorized, I drifted off to dreamland.

But the next morning, while having a cup of coffee heard the sound again. The first thing I did was check my laptop... then I checked Phillip's laptop, then I checked the coffee maker. Then, as I was walking down the hall to check the alarm clocks, I remember the sound from last night and at that same moment realized the sound was coming from me. What a strange feeling.

This is my first beeping experience and it is not at all what I thought it would sound like. I thought it would be more of an English emergency siren. When I had to go in for the Fidelis lead check up (yes, I have one of those) they played the alarm for me and it was a two toned sound, like an English Emergency siren. This is not that sound at all. It is a single tone, off/on beep. And it was in my chest. Weird.

My ICD is only three years old. I don't get paced and there had been no previous indications that my battery was getting low. However, I do have a lead that has been recalled by the manufacturer, that is always a concern.

I called my cardiologist’s office, explained the alarm sound and they had me send in a carelink report (Medtronic’s remote monitoring system). They told me there would be a delay, but they would get the information as quickly as they can and call me back. About an hour later, the nurse called and told me that the impendence levels had changed and that I needed to come in immediately. They didn’t have to tell me why. I understood. I knew the monitoring on the recalled lead has be set so that it will trigger an alarm if there is a change as that is the first signal that the lead has fractured. A fractured lead can cause a “noise” in the system that the device can read as an arrhythmia. This could lead to the device delivering a shock when I don’t really needed, an inappropriate shock.

What threw me was the tone of the alarm. Since this is coming from inside your body, the sound is a little muted, but is was audible. As I mentioned already, the alarm they demonstrated for me was a two tone, high/low sound. But the alarm I heart was a single pitch, off/on sound. I am still not sure why that was different, but the alarm got my attention, I called the doctor and the doctors had me come into the office. In the end it didn’t matter which sound it was, it worked as it should have to help me avoid inappropriate shocks.

Hear the alerts of a Medtronic ICD:

• Low alert or high alert.

Alternating High/Low or On/Off tones:

Your ICD has detected an alert condition (low battery, abnormal lead impedance, electrical reset condition, etc.) This tone will last for 30 seconds (in older models) or 10 or 20 seconds (in newer models). You should contact your physician if you hear this tone. In the vast majority of cases this is not an emergency or life threatening condition—but it is important to find out what is going on. The alternating tone alarm will never go off just once. It will go off regularly at consistent intervals until the ICD is interrogated at the clinic and the condition that triggered it is resolved in some way. Most commonly the alarm will go off daily at the exact same time each day. This time is programmable and they likely told you when it would be or maybe even let you select it when they set up your device.


• No condition.

Steady tone at one fixed pitch:

Everything is OK. Indicates that a magnetic field have been detected by the ICD. The tone will last for 30 seconds (in older devices) or 10 or 20 seconds (in newer devices). Every time the ICD detects the magnetic field the alarm will re-sound. During the time your ICD is in the magnetic field, it is DISABLED (shocks are TURNED OFF). When your ICD leaves the field, everything returns to normal (if you are no longer hearing the alarm, you have left the field).

There are several reasons for this ICD feature. First, if for some reason your ICD needs to be temporarily shut off (for example, if you're having surgery), then this tone would let doctors know that when they place a magnet over the ICD they have in fact disabled the ICD. Second, it is a way to check that the ICD is OK without having to go to the clinic—this feature is being used for checking the Medtronic Marquis devices that are affected by the battery recall. They also try to hear this All-OK tone after a surgery or procedure in order to verify that their equipment didn't damage your ICD.

Anxiety and the ICD Recipient

I recently had a conversation with someone from a medical device company and during the discussion she mentioned that she was surprised that someone that has never been shocked experienced anxiety about having an ICD. I was surprised she didn’t know that we did.

Anxiety is a constant topic with us. We have all experienced it and we have all supported those around us going through it. It is not something that we go through once. Many of us have gone through several ups and downs since being implanted. And what is more, it is the first thing most people on the forum will ask about. It has led to some great discussions among us wired folks and I thought I would share some of the collective advice.

First and foremost, understand that anxiety is a normal and common reaction. Very often we are getting the diagnosis of a major heart issue AND a recommendation to receive some pretty amazing technology all in a short period of time. To most people, this ICD stuff sounds like something from Star Trek and we are trying to learn medical terms we have never heard before at the same time. It takes some getting used to. I think the best way to address the anxiety is to break it down into manageable pieces.

Don’t be afraid to talk to your doctor about anxiety. Doctors are beginning to understand that it is not a walk in the park for those of us with ICDs and heart disease. Heart disease of any kind is enough to cause depression. Add to that the fear that we are going to get a shock (even though we understand we need it) and it can be overwhelming. Doctors can help with medication if needed. But they can’t do a thing to help you if you don’t mention it to them.

Find out everything you can about your heart condition. There are many things that cause dangerous arrhythmias, find out what is causing yours. No matter how complicated it is, there is a name for it… even it is something obscure like Non-focal Reticulated Cardiomyopathy. Ok, I just made that up but trust me, there is a name for your condition. Ask your doctor to explain it and don’t be afraid to ask him/her to explain any words or terms you are unfamiliar with. Then you will be able to read about and understand what is happening to your heart and why all this is necessary. From there, you and your doctor and come up with a plan to treat you going forward.

Look for a support group. I guess you have already done that by finding this site. But see if your local clinic or hospital has a group that meets in person. We didn’t have anything like it in the Bay Area (CA) so we started our own. It really helps to be able to talk to someone face to face about those moments when you are afraid to walk up the stairs or to be alone. If you are in the Bay Area, join us. If you are not, check with your clinic or hospital to see if they offer this type of program.

Learn as much as you can about your device. Ask your doctor to explain how it works, what kind you have and why he/she choose that model. Ask for a copy of your interrogation report and learn the different program settings. Knowing how it works really helped me get to a comfortable place mentally. I have a Medtronic device and found that they have lots of support information available to recipients. I think all the companies do this. I know it seems silly, but having one to hold and touch makes this seem a little easier for me. Ask your doctor to show you a device if you haven’t seen one already.

Finally, understand that it takes a little time. You are dealing with diagnosis, devices and mortality here. That is a lot to deal with. But it does get better. It won’t happen over night. But little by little you will get back to your old self or at least something very close to it.

Visit to Medtronic in San Francisco

Wednesday, 9/9/09, 6—8 PM

(Sorry, RSVPs are no longer being accepted.)

Join us for a visit to Medtronic’s office in San Francisco. This month, we will not meet on the second Saturday, as customary. Instead, we’re gathering on a Wednesday evening from 6 to 8 PM at Medtronic’s office in San Francisco.

ABOUT THE MEETING:

Medtronic has offered us privileged access to their Cath lab, where they train professionals and demonstrate products to physicians.

Medtronic will give us a short presentation covering a variety of advanced topics of interest, including a brief history of ICDs, leads and lead replacements, and a look into the future.

The presentation will be followed by a tour of their simulated implant lab. Clinical Specialists will be available to answer our questions, and refreshments will be served.

THE PROGRAM WILL FEATURE:

• Educational Presentation by Medtronic
• Virtual Cath Lab Experience
• Refreshments

This will probably be one of our best meetings yet. Don’t miss it!

LOCATION:
303 Second St.
Suite 850 North
San Francisco, CA 94107 (Google map)

DATE & TIME:
September 9, 2009
6:00 PM — 8:00 PM

If you have RSVP'd, your name will be at the door. You may arrive as early as 5:30 PM.

TRANSPORTATION AND PARKING:

303 SECOND STREET is located at walking distance from BART and MUNI, with easy access from the Bay Bridge, highways 101 and 280.

If you’re driving, consider the rush hour traffic. There are plenty of indoor parking spaces in the City Park Public Parking garage at the North Tower off Folsom Street. Medtronic has kindly offered to validate parking for this event. Let me know if you have special transportation needs.