The Beat Goes On: a book for young adults living with a pacemaker and ICD

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PRITCHETT & HULL ASSOCIATES, INC. 3440 OAKCLIFF RD NE STE 126 ATLANTA GA 30340-3006

2017 edition Copyright © 2007, 2010

by Pritchett & Hull Associates, Inc. All rights reserved. No part of this book may be photocopied, reprinted or otherwise reproduced without written permission from Pritchett & Hull Associates, Inc.

Published and distributed by: Pritchett & Hull Associates, Inc. Printed in the U.S.A.

This book is written to help you understand heart rhythm problems and pacemakers and ICDs. It should not be used to replace any of your doctor’s advice or treatment.

The Beat Goes On! There may be things about your heart rhythm problem or pacemaker or ICD (devices) you don’t understand.

So, this book is for you, a young adult who has a pacemaker or an implantable cardioverter defibrillator (ICD).

This book was written to help you understand: • why a device was needed • what a device does • the type of device you have • your follow up care • how your device affects your activities • how to care for your device • everyday things that may concern you • when to call your doctor • precautions and warnings • the need to take your own pulse • quality of life issues

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Table of Contents A healthy heart........................................................................................... 3 The heart’s electrical system................................................................. 4-5 Abnormal heart rhythms....................................................................... 6-7 Bradycardia.................................................................................. 7 Tachycardia................................................................................. 7 What your device does........................................................................... 8-9 Parts of a pacemaker or ICD................................................................... 10 The type of device you have.............................................................. 11-15 Caring for your device........................................................................ 16-19 Routine follow-up visits....................................................... 16-17 Programmers for devices.......................................................... 18 Home monitoring..................................................................... 18 Internet-based monitoring....................................................... 19 The life of your device........................................................................ 20-22 Device identification (ID) card............................................................... 23 Check the beat......................................................................................... 24 Everyday things and your pacemaker............................................... 25-37 Electricity and magnets............................................................ 25 Things that are safe................................................................... 26 Cell phones................................................................................ 27 Security systems........................................................................ 27 Things to avoid.......................................................................... 28 Dental and diagnostic medical procedures....................... 30-31 Surgery.................................................................................. 30-31 Driving........................................................................................ 32 Activity restrictions.............................................................. 33-35 Diet recommendations............................................................. 36 What to do if you think your defibrillator went off................. 37 When to call your pacemaker or ICD doctor......................................... 38 Quality of life is key................................................................................. 39 Pacemaker/ICD diary......................................................................40-IBC

A Healthy Heart When you were first told you needed a pacemaker or an internal cardioverter defibrillator (ICD), you were most likely told about how a healthy heart works.

Let’s review some of that now.

Your heart is a muscle that pumps blood through your body.

The normal heart has four chambers. There are two upper chambers (the atria) and two lower chambers (the ventricles).

As the blood circulates, it delivers oxygen and nutrients throughout your body.

to rest of body

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The atria take in blood from the body and lungs and pump it to the ventricles. The ventricles take the blood from the atria and pump it out to the lungs and to the rest of your body.

Left Atrium

Right Atrium Left Ventricle Healthy Heart

Right Ventricle

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The Heart’s Electrical System Your heart has its own electrical system. This system is what makes your heart beat. It also controls your heart rate. Certain tissue cells create electrical signals or impulses. The electrical signals travel along pathways throughout your heart.

The electrical impulse normally begins in a cluster of special cells in the right atrium called the sinus node. The sinus node functions as the heart’s “natural pacemaker”, setting the pace for your heartbeat.

The electrical impulse travels through the atria, causing them to contract (squeeze) and pump blood into the ventricles.

From the atria, the electrical impulse reaches the atrioventricular node, or AV node, which is between the atria and the ventricles. The AV node is like an electrical “gatekeeper” that slows down each electrical impulse before allowing it to pass to the ventricles. This gives enough time for the ventricles to completely fill with blood from the atrial contraction. The impulse then travels to the ventricles through conduction pathways, which carry the impulse to both ventricles and cause them to contract and pump blood out to the body.

As long as the electrical impulses travel at regular intervals, your heart will beat at a steady pace. The rate at which your heart beats depends on your age, and will vary according to your level of activity or excitement.

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Sinus Node

Left Atrium Conduction Pathways

Right Atrium Left Ventricle AV Node

Right Ventricle

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Abnormal Heart Rhythms You have an abnormal heart rhythm called arrhythmia (or dysrhythmia). This means that either the rate or pattern of your heartbeat is not regular. When you have an abnormal rhythm, your heart may beat: • too slow • too fast • irregularly An arrhythmia may feel like a skipping or fluttering in your chest (palpitation). It may also cause: • dizziness • fainting • chest pain • confusion • fatigue • shortness of breath • a reduced ability to exercise Sometimes, arrhythmias may go unnoticed. Often the first sign of problems is when normal daily activities or exercise makes you more tired or short of breath than your usual feeling with the same activity.

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But when the abnormal rhythm is coming from the ventricles and the heart beats too slow or too fast to pump blood effectively and be able to maintain an adequate blood pressure, they become serious. And, although rare, an arrhythmia may lead to sudden death.

Bradycardia

Bradycardia is the most common reason for a pacemaker. It means the heart rate is too slow to meet the body’s demands. What is too slow depends on your age and how you tolerate this slow rate during your regular activities.

Tachycardia

tachycardia

Sinus pause (arrest):

SA node does not start a signal at the usual time.

Normal heartbeats Fast heart rhythms are called tachycardias. During a tachycardia there may not be enough time for the heart to fill with blood between beats.

So, the heart does not pump blood as efficiently as it does during a normal beat. If this rapid heartbeat continues, the brain and body may not receive enough blood and oxygen.

In some cases, tachycardia in the atria can be treated with medicine.

But, if not, you may need a special AT (anti-tachycardia) pacemaker. When the abnormal rhythm is in the ventricles, you may need an ICD (internal cardioverter defibrillator).

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What Your Device Does Your device is designed to monitor your heart’s natural electrical activity (this function is called sensing) and deliver pulses when your heart rate is too slow (this function is called pacing).

Many of your device’s pacing and monitoring functions can be adjusted or programmed by your pacemaker doctor or nurse during clinic visits.

Pacemakers If your pacemaker senses that your heart is beating too slow or pauses for too long, it sends tiny pulses that are so slight they will not be felt. These pulses cause your heart muscle to contract and pump blood.

This is just like the electrical system of a normal heart.

If the pacemaker senses your heart is beating at the right pace, it will stay “on stand by” until it is needed.

The instant your heart starts beating too slowly or pauses, the pacemaker will begin pacing again.

ECG showing paced rhythm

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Specialty Devices A specialty device can detect and treat fast heart rhythms.

While some medicines can prevent an arrhythmia, these devices can interrupt and stop an arrhythmia when it happens.

Steps can be programmed into the device’s generator.

When the device senses a fast heart rhythm, these actions can restore a more normal rhythm to your heart.

There are two types of these devices:

AT (anti-tachycardia) pacemaker An AT pacemaker senses a fast rhythm in the atria and sends a burst of pulses to your heart to “reset” it to normal beating.

ICD (internal cardioverter defibrillator) ICDs sense a fast rhythm in the ventricles and will attempt to pace and “reset” to normal beating again. But if the pacing does not work or the abnormal rhythm is life-threatening, your ICD can “shock” your heart back into a normal rhythm.

CRT (cardiac resynchronization therapy) This is a therapy to help relieve heart failure symptoms in certain patients. The therapy uses a special kind of pacemaker with up to three leads, called a Biventricular Pacemaker. It prompts the ventricles to beat at the same time. There is also a combination CRT and ICD for those who have a high risk of sudden cardiac arrest.

This is called a CRTD (cardiac resynchronization therapy defibrillator).

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Parts of a Pacemaker or ICD No matter which type device you have, your device has two main parts:

Pulse Generator A pulse generator is the smooth, lightweight metal can containing a battery and circuitry. The battery supplies the electrical energy. Working like a “mini computer,� the circuitry produces tiny electrical pulses, and also controls the timing of when those pulses are sent to your heart. The generator stores information (memory) that your doctor retrieves during follow-up visits.

Lead (or Leads)

Pulse Generator

Lead

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A lead is an insulated, flexible wire that is placed in (called transvenous) or on your heart (called epicardial).

The lead carries electrical energy from the pulse generator to your heart muscle.

It also relays your heart’s activity back to the pulse generator. Based on the type of pacemaker implanted, one, two or three leads may be used.

The Type of Device You Have As a rule, a heart’s rhythm slows down or speeds up many times during the day. Your heart beats slower while you are resting or sleeping. Activity makes your heart beat faster because your body needs more blood.

The type of device you have is designed for your special needs.

Identify the type you have. Put a check in the box to the left of it.

Single Chamber Pacemaker– A single chamber pacemaker uses one lead (or wire), placed either in or on the atrium or the ventricle. It is designed to sense and pace in only that chamber.

Dual Chamber Pacemaker– A dual chamber pacemaker has one or two pacing leads.

Most often, one lead is placed in or on the atrium, and the other is placed in or on the ventricle.

A dual chamber pacemaker can check both atrial and ventricular activity and decide if pacing is needed. When pacing occurs, the atrial and ventricular contractions can be coordinated, much like in a normal heart. This closely matches your heart’s natural rhythm and is called AV sequential rhythm.

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Rate-Responsive Pacemaker– A rateresponsive pacemaker uses special sensors to monitor changes in your body, such as motion, temperature or breathing rate. In response to these changes, the pacemaker helps your heartbeat speed up or slow down to meet your body’s changing needs. This type of pacing is similar to your natural heart rhythm and may allow you to be more active.

Rate-responsive pacemakers can be single chamber or dual chamber devices. They may be put in the atria and/or the ventricles.

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AT (Antitachycardia) Pacemakers– An AT pacemaker treats abnormally fast heart rhythms that begin in the atria (atrial flutter).

Atrial flutter and fibrillation causes your heart to beat too fast and not in a regular rhythm (atria “flutter or quiver”).

When this happens, all the blood does not empty into the ventricles. Instead the blood pools in the atria and can form clots. If these blood clots begin to move, they may go to your brain and cause a stroke.

When a fast atrial rhythm is detected, the AT pacemaker sends a burst of faster pulses to the atria. These pulses override the abnormal rhythm, the tachycardia stops and the heart returns to a normal rhythm.

If a slow heartbeat is detected, the AT pacemaker can also send a pacing signal to return the slow, abnormal rhythm back to a normal rhythm.

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ICD (Implantable Cardioverter Defibrillator)An ICD is a device that detects and treats ventricular tachycardia and/or ventricular fibrillation. ICDs can be either single chamber or dual chamber devices.

Ventricular tachycardias are abnormally fast heart rates that begin in the ventricles and decrease your heart’s ability to pump blood. This type of fast rate does not let your heart fill completely with blood between beats.

Ventricular fibrillation causes the ventricles to “fibrillate” or quiver. When the heart quivers, there is little or no blood flow to the body. This is serious and will lead to cardiac arrest (heart stops beating) within minutes if help is not provided at once.

An ICD senses the fast rhythm and sends out a burst of paced beats to “reset” it to a normal rhythm.

But if the pacing does not work, or the abnormal rhythm is life-threatening, your ICD can “shock” your heart back into normal rhythm. Emergency shock treatment must be delivered by the ICD to restore a normal heartbeat within seconds of the life threatening fibrillation.

Because an ICD also has pacing capabilities, if you have a slow heart rate it will detect it. Then it will send pacing signals to correct the slow heart rhythm.

You most likely will not feel the pacing by your ICD, but if it shocks, it might feel like you got a “kick in the chest.”

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Biventricular Pacemaker– The heart’s electrical system doesn’t send the proper signal when the muscle is stretched or is too thick, due to chronic heart failure. The two ventricles don’t pump at the same time. When this happens, less blood is sent out to the body with each beat. In a healthy heart, this might not be a problem. But, because the heart is already weaker than most, this is an extra burden, and can make heart failure worse.

A special kind of pacemaker can help with this problem. The biventricular pacemaker sends tiny, timed electrical signals to the ventricles to make both squeeze and relax at the same time. This sends more blood and oxygen out to your body.

As a result, your symptoms are lessened and you feel better. This is called CRT (cardiac resynchronization therapy).

If you have life-threatening fast heartbeats, as well as heart failure, a combination ICD and biventricular pacemaker can be used. The ICD detects the fast rhythm and sends signals to “shock” it back into a normal rhythm.

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Caring for Your Device It is important that you have routine follow-up visits with your device doctor or clinic. Your device can also be checked with telephone monitoring. Some devices can also be monitored over the internet.

Routine Follow-up Visits Follow-up visits are needed to help make sure your device is working properly. Follow-up visits allow all parts of your device to be checked.

This includes checking the device settings, battery status and the lead(s).

Most pacemaker and ICD guidelines require some type of in-person or remote system evaluation every 3 months.

During an office visit, an electrocardiogram (ECG) may be done.

The ECG records the electrical activity of both your heart and your device.

Other tests may also be done during an office visit. These may include:

Echocardiogram (ECHO)– a wand-like scanner is moved over your chest. Sound waves bounce back and forth and form a picture of your heart. It shows if there are any signs of muscle weakness or other problems with your heart.

Exercise stress test– measures your heart rate, blood pressure and oxygen usage while you walk on a treadmill, ride a stationary bike or exercise on some other machine.

Chest x-ray– gives a picture of your heart, your device leads and your lungs.

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You may also be asked to wear a Holter Monitor. This is a small ECG machine you wear on your belt or around your neck. It records your heart’s activity for 24 hours. If there is a symptom or problem, you write down in a diary the time it occurs and what you were doing at the time. Your doctor can compare the diary, notes, and time or times with what your ECG shows on the recording to see if any abnormal rhythms occurred.

Sometimes, an Event Recorder that you can wear for an extended time (like 30 days) will give the doctor more helpful information than the 24 hour Holter Monitor.

Holter Monitor

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Programmers for Devices A programmer is a small computer. Each cardiac device company has a device programmer for its pacemakers and ICDs. When your device was implanted during surgery, your doctor used it to turn on your cardiac device and make the initial settings.

The programmer is used during follow-up visits to get information from your device. This first step is to place a programming head or magnet over your implant area. Using the programmer is not painful and gives more information than an ECG. This magnet check allows the doctor to:

Programmer

• test your device and lead functions and battery status • retrieve stored data and electrograms (a type of ECG) that show how your device is working • change the settings (speed, energy, timing of signals between chambers, etc.)

Home monitoring Your doctor may ask you to do home monitoring of your device using the internet. If so, you will use a transmitter that connects to your device company’s secure internet server.

This is often through a telephone line.

(Sometimes companies use the worldwide cell phone system instead of a regular LAN telephone line.) Your device company will mail you the transmitter at no extra cost to you. Your doctor or nurse can view the data on the company’s secure website Transmitter and download a full report.

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Your doctor will tell you the dates on which he or she wants you to use the transmitter. It is easy to do. Follow the instructions in the kit. If you have any questions, call the telephone number included with the kit.

Wireless Device If your device has the wireless feature, all you have to do is be within a few yards of the transmitter during the night when the cardiac device ‘wakes up’ and communicates with it.

Non-wireless Device If your device does not have the wireless feature, yo uwill need to hold a mouse-shaped antenna (called a wand) over the device during the transmission.

For years cardiac devices were monitored through scheduled telephone transmissions to a device clinic or doctor’s office. Some pacemaker patients may continue with this method of home monitoring.

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The Life of Your Device Your device is built to last years before it needs to be replaced — up to 10 years for a pacemaker. The average lifespan is about 7 years.

Thanks to ongoing research and development, the battery life of devices continues to increase, and yet the size of the generator has decreased.

How long your device will last depends on how hard and how often the battery has to work.

How long the battery will last depends on: • your medical condition • the type of device you have • the way it is programmed (heart rate and energy output) The life of the battery and the lead(s) cannot be accurately predicted. Today’s leads are designed to last years, but the actual time varies with each patient.

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It is unlikely that your device will suddenly stop working. When it needs to be replaced, it is designed to change its pacing rate to show the need for replacement. This change occurs several months before the battery is drained. This gives your doctor time to schedule replacement surgery.

Your doctor will be checking for this rate change during your follow-up office visits and routine monitoring.

However, an acute lead problem (such as a lead fracture) may cause your device system to stop working. If this happens, the lead needs to be replaced.

If your heart rhythm is pacemaker dependent (has no backup rhythm of its own), this must be done immediately.

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Because the battery is permanently sealed inside the device, the entire pulse generator will be replaced when the battery is depleted.

This is typically a minor surgical procedure that involves opening the device pocket, removing the old pulse generator and replacing it with a new one. It may be a same day surgical procedure or you may need to spend a night in the hospital. Your doctor will discuss this with you when the time comes.

When your pulse generator is replaced, your doctor will check to see if new leads are needed.

If the leads are working well, the existing leads will be connected to the new pulse generator.

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Device Identification (ID) Card You will be given a wallet card that gives basic information about your device.

It also includes your doctor’s name and phone number.

You should carry this ID card with you at all times. In case of an accident or sudden illness, this card will alert those around you that you have a pacemaker or an ICD. It is a good idea to make a spare copy and keep it at home. In the event you lose one, you will still have the other.

Show your ID to any health care provider you visit. If you move, change your telephone number or change doctors, let your new doctor know about it as soon as you can.

It is also important to show this card to airport personnel when traveling. Your device will set off the security system. Also show ID at any other facility where metal detectors or security screening is required.

Think about getting a MedicAlert ID* bracelet or necklace that shows that you have a heart rhythm problem and a device.

* MedicAlert is one type of ID you can buy. The ID will have a 24-hour emergency number, a list of your medical conditions and a code number assigned to you when the bracelet is bought. Your medical records are stored under this code number. For more information, contact: MedicAlert Foundation International, 5226 Pirrone Ct., Salida, CA 95368, 1-800-432-5378, www.medicalert.org.

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Check the Beat In addition to clinic visits and routine monitoring to check your device and how it is working, you should learn to check your own pulse from time to time.

Always check your pulse if you have weak spells or any dizziness to make sure it is not your device causing it. If possible, ask someone to help you check it.

Here is a simple way to check your pulse: 1. P ut the tips of your first two fingers lightly over the artery in your wrist or neck.

2. Count the beats you feel in 15 seconds.

3. Multiply this number by 4.

4. This is your pulse rate.

Number of beats in 15 seconds =______ x 4 =______ your pulse rate

Talk with your doctor about when to call if you have an irregular pulse.

Your doctor will most likely give you a range in which your pulse should be.

Write that here.

My pulse should be between______and______(at rest).

My maximum pulse when I exercise should not exceed _______.

If it’s not, I need to call (___)_____-______ and tell my doctor about it.

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Everyday Things and Your Pacemaker Electricity and Magnets Electromagnetic interference (EMI) can affect how your cardiac device works, especially an ICD. Long periods of EMI can cause you to feel dizzy or notice your heart is beating too fast. Some devices give off beeping tones or vibrations when you are near EMI. Moving away from the equipment that is causing the EMI is often all that’s needed. Usually, any symptoms go away and the device goes back to normal. In some cases, strong and long-lasting EMI might change the device settings and/or damage the circuits.

Being very close to any of these can cause EMI: • power plants, large generators and power transmission lines and buildings • restricted access areas of radar or radio/TV broadcasting antennas • strong magnets (i.e. MRIs or junkyard magnets used to lift cars) Generally, most electrical items that are found around the house are safe and will not interfere with your device. Several safeguards are built into pacemakers and ICDs to prevent magnetic interference from affecting how they work. But, to be sure, avoid placing any electronic item directly over your device.

If you think there is anything interfering with your device, simply move away from or turn off the electrical device.

Things That are Safe Most household appliances and equipment, that are properly grounded and in good working order, are safe for you to be around and run. But, poor grounding can cause electromagnetic interference.

Below is a list of many items that are safe for you to be around and use. If you have a question about any other item, ask your doctor.

• Televisions, stereos (see page 30), FM and AM radios, VCRs, DVDs, CD players

Make sure you have grounded outlets in your home and where you work!

• Video games, desktop and laptop computers, copy machines, fax machines and laser and dot-matrix printers • Electric blankets, heating pads and portable space heaters • Tabletop appliances including toasters, blenders, electric can openers and most modern microwave ovens* • Large appliances including washers, dryers, gas and electric stoves and refrigerators • Treadmills, lawnmowers and vacuum cleaners • Power drills, electric screw drivers • Small refrigerator magnets * As a rule, you can safely use modern microwave ovens. But, if you are using an old microwave, don’t stand directly in front of the microwave while it is heating food.

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Cell Phones, ipods®, etc.

New cardiac devices have been tested with many types of cell phones and other electronic items. No special safety precautions are needed.

But, follow these safety steps to reduce any chance of interference: • Hold the cell phone or earbud over the ear opposite from your cardiac device.

• Don’t carry the phone, ipod®, etc. in a breast pocket directly over your device.

If you have specific questions about your device and how it might interact with cell phones or other electronic items, talk to your doctor.

Wireless internet modems and routers are safe, but you should follow the same safety steps as above to reduce the chance of interference.

Security Systems The metal case of a cardiac device can trigger an alarm as you walk through a security detector. Keep your device ID card with you when shopping or going through the airport.

Walking through the electromagnetic field of a security detector or having a hand-held wand waved briefly over your device should not damage or reset your device. However, do not stand or lean against either the outside or inside of a security detector for any length of time.

Security Wand

Remember Do not stand close to any electrical device if you think it is causing a problem with your pacemaker or ICD.

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Things to Avoid Don’t use or carry any kind of large magnet or magnetized material near your pacemaker or ICD. This includes kilns (used in pottery making), toys with large magnets, a heating pad or massager. While they are in operation, also avoid handling devices that deliver electrical energy bursts, such as: • jumper cables • large battery chargers Don’t lean closely over spark-ignited motors when they are running, such as automobile engines, lawnmowers, leaf or snow blowers, tractors or boat engines.

Other Things to Avoid Some device companies suggest you also avoid: • abdominal stimulators • electric body fat scales • magnetic mattresses, chairs and pillows Check with your doctor and/or device company before operating chain saws, electric arc welders or heavy industrial equipment such as: • dielectic heaters

• electric steel furnaces

• induction furnaces

• large industrial magnets

Some device companies also say to keep at least 3 feet away from residential transformers and avoid using a jackhammer.

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MRIs Magnetic resonance imaging (MRI or MRA*) is still being studied in patients with either a pacemaker or an ICD. Some newer cardiac devices ARE approved for MRI as long as they are paired with a suitable lead system.

Ask your doctor if your device and the lead system are approved for MRI. Show your device ID card and pass on what you are told to any doctor you see, especially in an emergency situation if MRI is mentioned. Any doctor can follow up with the company as needed 24/7.

If your device and lead system are NOT approved for MRI, many hospitals will not do the MRI. If an MRI is crucial at some point, your doctor may ask you to see an electrophysiologist (EP doctor). Sometimes they can make device changes and supervise an MRI procedure to reduce the risk of MRI to the device. These MD’s have a lot of experience with MRI in patients with devices. Research continues to see if MRI or MRA can be done safely in more cardiac devices.

* Magnetic resonance imaging angiography 29

Dental and Other Diagnostic Medical Procedures Tell your dentist that you have a pacemaker or ICD. Generally, most dental and medical procedures are safe and will not interfere with your pacemaker or ICD including: • CT or CAT scans • dental drills, ultrasonic probes to clean teeth and dental x-rays • diagnostic x-rays, including chest x-rays It may be that you need antibiotics before you have any dental work and some surgeries. Talk with your doctor about this. If you need it, you will most likely take one dose of antibiotics one hour before the procedure. This is to help prevent a bacterial infection inside your heart, called endocarditis.

Surgery Make sure your surgeon knows that you have a pacemaker or an ICD before surgery. If electrocautery is required for your surgery, your device will need to be checked by a pacemaker/ICD nurse immediately after the surgery.

(Electrocautery uses high frequency waves.)

CAUTION! You should not have any surgery with electrocautery in any facility that does not have on-site pacemaker/ICD support services.

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Remember, before you have any medical procedure, tell the doctor, dentist or technician that you have a pacemaker or ICD. They may need to speak with your device doctor before doing the procedure. Some cardiac devices ARE MRI-compatible but many are not.

If you have any questions about any situation or piece of equipment, ask your doctor or nurse. You may want to keep a journal to help you remember these things. You can use this space to begin.

Things to be careful about using are:

Driving You may be able to drive, but check with your doctor first.

It depends on the local or state laws and on your heart condition.

The decision is based on what is best for both your safety and the safety of others.

Generally, if you have times when you black out (lose consciousness), have confusion or loss of awareness due to a rapid heart rhythm, your device doctor will not let you drive until the abnormal heart rhythm has been under control for some time (often 3 - 6 months without an incident).

Ask your device doctor about how your condition and your state’s laws may affect your ability to drive a vehicle.

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Activity Restrictions Talk to your doctor about the activities and sports you want to do and your level of competition. There are some basic rules you should follow.

For physical activity, the rule of thumb is to avoid rough physical contact—especially things that involve jarring or falling. Too much stretching, twisting or weight bearing with the shoulders or arms should be avoided too.

You should be cautious or avoid exercises such as kickboxing, martial arts and gymnastics that involve any direct impact or sustained stretching of your upper body.

Contact sports such as football, ice hockey, lacrosse and wrestling could be dangerous for you. This is because you might injure the device site or fracture (break) the lead.

Amusement rides warn people with heart problems not to ride them. Ask your device doctor if you can go on these rides.

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If you want to lift weights, use weights that are light enough so that you can easily do 15 repetitions. Avoid straining while lifting weights because that can damage the device pocket.

Make sure you tell your school or employer (nurse, gym teacher, personal trainer, coach, etc.) that you have a device, what activities you should not do and about any potential problems. You will probably have to fill out special forms before you are allowed to take part in a program.

If you are under 18, your parents will most likely have to sign that it is OK for you to play, especially any team sport.

It is important for you to share your medical information about your heart condition and device with any volunteer programs you participate with. This is especially true if you have responsibility for young children, like camps, youth groups, etc.

More restrictions may apply when you have a congenital heart defect.

Talk with your doctor about any other activity restrictions.

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Sexual activity Your device should not affect your sexual activity. The only thing that may be an issue is if you have a rate responsive pacemaker. In that case your heart rate may speed up a little more than you might expect it to. Other than that, there is no reason you cannot engage in sexual activity.

If your sex life was limited before you had a pacemaker because of a very slow heart rate, it may be better now that you have a device. Your body will move with more energy than it had before.

If you have an ICD, and it goes off while you are having sex, it may make you feel like you were kicked in the chest. This may distract you from what you are doing. And your partner may feel a tiny tingle from the charge. Talk with your doctor if this continues to happen.

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Diet Recommendations A diet low in fat and high in fiber is good for everyone. When you have a heart problem, it is even more important. And it is important to reduce sodium in your diet.

Follow these tips for reducing the fat and increasing the fiber in your diet: • Eat more fish and lean cuts of meat such as chicken or turkey.

• Bake, broil of poach meats.

• Remove the skin from chicken and turkey.

• Use skim milk, 1% milk or evaporated skim milk instead of whole milk or 2% milk.

• Use low-fat, low-sodium cheeses.

• Eat more fresh or frozen fruits.

• East more fresh or frozen vegetables.

• Use less cream and cheese sauces on vegetables or salads.

• Eat whole grain rice, pasta, English muffins, bagels, sandwich breads or soft tortillas.

• Eat whole grain cereals (hot or cold).

• Eat dry peas and beans.

• Use olive oil in place of butter or margarine.

• Use very little salt in your food.

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Have at least 5 servings a day of fruits and vegetables.

What to do if You Think Your Defibrillator Went Off If you think you have received a shock from your ICD, you should call your doctor. If you become unconscious for more than a minute, be sure someone else knows to call an ambulance. Discuss this with family or friends now so they know what to do.

If you have symptoms of a rapid heart rhythm, your ICD will most likely give therapy within a few seconds. If you appear fine after the therapy and no more symptoms or shocks occur, you should speak with your doctor that day. The doctor may want to download information from the ICD about the event.

You could feel symptoms and not receive therapy from your ICD. This depends on how it is programmed. If your symptoms are severe or do not go away, and you feel no shock, you should get medical attention at once.

Keep a diary of dates and times when you feel symptoms of a rapid heart rhythm.

The doctor can compare these dates and times with the information taken from the ICD during follow-up visits.

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When to Call Your Pacemaker or ICD Doctor Watch for physical signs that your device and/or heart condition need to be checked. Call your doctor immediately if you have any of these symptoms: • chest pain • dizziness or fainting • persistent fatigue (being tired all the time) • vomiting • breathing difficulty • if you fall or are hit on the pacemaker/ ICD site

• twitching or pulsating abdominal or chest muscles • hiccups that won’t stop • a swollen arm on the side of the device • slower heart rate than the pacemaker setting

When you have an ICD, call your doctor if you have: • a shock from your ICD • no shock when you have severe symptoms of tachycardia • warning tones (beeping coming from your ICD) • redness, swelling or tenderness around the incision • fluid leaking from the incision • fever of 100ºF (38ºC) or higher If your defibrillator delivers more than 2 shocks, go to the emergency room as soon as possible.

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• unusual heart rate increases or palpitations • warm feeling over surgical site • swelling around, or drainage from, the incision • fever of 100ºF (38ºC) or higher

Everyday Things and Your Pacemaker Quality of Life is Key Pacemakers and ICDs have improved the quality of life for so many. It is important to use good common sense and follow the guidelines your doctor and this book have outlined for you.

Life with an implantable device is to be enjoyed. Quality, not quantity is what you aim for.

Life is not meant to be patterned or paralyzed by the fact that you have such a device for your heart. It is just making sure that “The Beat Goes On.”

End of life considerations for ICDs Your device cannot prevent or cure the heart muscle from further deterioration. If your doctor tells you that your heart disease has reached “end stage,” it is important to discuss with your doctor and family whether you want the ICD’s “shock” function turned off. This information should also be part of any Hospice Care plans you have.

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Pacemaker/ICD Diary Use this space to ask the questions you need from your doctor or nurse:

What company made my device?

Biotronik_____Boston Scientific (Guidant)_____Medtronic St. Jude Medical/Abbott_____Other:__________________________

What type of device do I have?

Pacemaker

Single chamber:_____right ventricle Dual chamber:_____right atrium or_____right ventricle

_____left ventricle

Biventricular: _____right atrium or_____right ventricle

_____left ventricle

Rate responsive sensors: Breathing:___________________________________________ Body movement:______________________________________ Biventricular pacemaker with defibrillation (CRT-D):________________________________

ICD Single chamber:______right ventricle Dual chamber:_____right atrium or_____right ventricle

______left ventricle

Biventricular: _____right atrium or_____ right ventricle

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_____left ventricle

Pacemaker/ICD Diary continued

What to do if the ICD delivers a shock?

Call

Dial 911 if you feel dizzy after a shock.

What type of follow-up monitoring will I need?

Internet-based remote home monitoring:

Telephone transmission (some pacemakers):

How will I get the monitoring equipment?

Office/clinic visits:

Special advice Incision care:

Arm activities in the first few weeks:

First MD appointment: Return to work/driving:

Other:

Reviewers William A. Scott, MD University of Texas Southwestern Medical Center Dallas, TX Teresa A. Lyle, RN, MN, CPNP Adult Congenital Cardiac Program Emory Healthcare Emory University Hospital Atlanta, GA Nancy S. Winn, RN, BSN Electrophysiology Department Emory University Hospital Atlanta, GA

We believe that you have the right to know as much as you can about your health. Our goal is to give you enough facts to get the main points clearly in mind. We do this with medical accuracy, warmth and humor. The result for you: less tension, more healing and a good idea of what to ask your doctor, nurse or others.

Pritchett & Hull Associates, Inc. 3440 Oakcliff Road, NE, Suite 126 Atlanta, GA 30340-3006

1-800-241-4925 www.p-h.com

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