A Guide for Survivors Receiving a Implanted Defibrillator

What is an ICD? Why do I need one?

Because many different causes and situations can lead to cardiac arrest, long-term treatment may vary. A common treatment offered to survivors to prevent future events is an implanted device such as a defibrillator or pacemaker. This article provides an overview of these treatments and helpful information about living with implanted devices.

Who gets an implanted device? 

Some but not all survivors of cardiac arrest may need an implanted device to monitor or treat their heart rhythm. Because of the many different causes that can lead to cardiac arrest, not every survivor will require one. A device may be implanted before you leave the hospital if you have an ongoing risk of arrhythmia or abnormal heart rhythm.

Types of implanted devices 

There are many different types of devices. The specific device you may receive will depend upon your needs. 

An automatic implantable cardioverter defibrillator (AICD, more commonly referred to as ICD) is a device that can monitor the heart rhythm and deliver a life-saving therapy in the form of a shock, if needed to reset the abnormal heart rhythm and prevent another cardiac arrest from happening. An ICD system includes a generator and wires. The generator is implanted under skin or muscle within the chest, though sometimes it may be in another location such as the abdomen. One or more wires (“leads”) from this device connect to your heart.  Some ICDs also function as pacemakers.  

A pacemaker is a device that monitors the heart and sends an electrical impulse when the heart rhythm is interrupted, irregular, or too slow.

There are various kinds of implanted pacemakers and defibrillators including:

• • The “S-ICD” is a type of defibrillator. The S stands for subcutaneous and refers to the fact that the lead is under the skin without touching the heart. Some of the general information about ICDs will apply to the S-ICD, but some questions or concerns you may have will be specific to this type of device. You can find more information about the S-ICD from Boston Scientific.
  • A “CRT” is a pacemaker or defibrillator that can do cardiac resynchronization therapy, a type of pacing that can help the heart beat more effectively. These are generally used for people with heart failure. If the CRT is a defibrillator, it will be called a CRT-D.  If the CRT is only a pacemaker, it will be called a CRT-P. You may also hear it called a “biventricular ICD” or a “biventricular pacemaker.”
  • There is also a type of pacemaker that is “leadless” which is a tiny device implanted inside the heart. Read more about 2 kinds of leadless pacemakers: the Medtronic Micra and the Abbott Aveir.  
  • The EV-ICD (Extravascular Implantable Cardioverter Defibrillator) is a small device that is implanted under the skin of the chest and connected to the heart by a lead. The EV-ICD differs from traditional ICDs in that it does not require a lead to be threaded through the veins and into the heart. Instead, it is placed under the ribcage and outside the heart and blood vessels. This is a new technology still in clinical trials. If your hospital is a study site, you could be offered the EV-ICD.

• Your care team will talk to you about what kind of implanted device would be best for you. Your care team will also support you as you adjust to life with an implanted device. It’s common to feel overwhelmed by all the new terminology and information. Remember you don’t have to know everything all at once. You will soon get the hang of it and learn to live with your device.

Procedure and recovery

You may have questions about your procedure and recovery. Your care team can address your questions and concerns about the surgical procedure (what type of device, how it will be implanted, etc.). All procedures come with risks. If your care team recommends an implanted device, it is because any risks are outweighed by the benefits.

You will be given information on recovery and incision care before discharge. It’s important to follow these instructions to ensure you heal well with no complications. You may have temporary restrictions on bathing or activities while healing. Make sure you know who to contact if you have a question about recovery after going home.

Living with an implanted device

After recovery, living with an implanted device should not have a major effect on your lifestyle. Activities such as exercise will depend mostly on your health situation, not the device. 

Your device will require regular follow-up care, typically every few months. These checks may be done in person at a clinic or hospital, or they may be done from home with a remote monitor or app. If adjustments to your device settings (“programming”) are needed, these will be done in the office. For some devices, a check may include pacing your heart. This is not painful, but it can feel strange. Most device patients find these visits less stressful after they have done them a few times and know what to expect. 

Battery life will be monitored at every device check. When needed, a replacement procedure will be scheduled. Replacements are typically minor procedures where you can go home the same day, though this will depend on your individual situation.   

Many implanted devices have alert tones or vibrations to let you know if something is wrong and you need to seek care. Ask your care team about your alerts if you are not given this information. Alerts are not common, but it’s helpful if you are familiar with the sound or feeling and how to respond.

Understanding the ICD shocks

While shocks can be lifesaving, they can be stressful and confusing for you and your family. It’s helpful to know how to handle it if or when it happens. Everyone’s experience with an ICD shock is unique. For many, the emotional distress is more challenging than the physical pain and discomfort, which is short lived.  The possibility of getting a shock can also prompt feelings of anxiety, depression, or fear.  Research has shown that having a plan can reduce this anxiety and uncertainty. Your care team should provide you with information specific to your situation.  Ask for this information if it was not provided at discharge.

Here are some tips to feel prepared:

• • Educate yourself:  Learn as much as you can about the ICD and how it works. Understanding the purpose of the ICD, how it operates, and how to respond if a shock occurs will help to reduce your anxiety and help you to cope more effectively.  You may also want to join a support group of ICD patients.
  • Keep information handy:  Three sources of information are important to have available: your ICD identification card, a list of your medications, and your doctor’s name and phone number. This information will allow healthcare providers to take the best possible care of you in an emergency.
  • Make an action plan:  Preparing for an ICD shock might involve rehearsing what you should do if you were to receive a shock. Your doctor may have a specific plan for you. A sample shock plan can be found here. Yours may be similar.

The manufacturer of your device is a reliable resource

Once you know what type of device you or your loved one will be getting, you may wish to learn more about it. Technology changes rapidly. Unfortunately, there is outdated and incorrect information on the internet. The device manufacturer is the most reliable and up-to-date resource on your device. Be sure to fact check any information you may read online or hear from people you know.  

General information about devices, how they work, and what household items and medical procedures may require precautions can be found on the manufacturers’ websites: 

• • Medtronic 
  • Boston Scientific
  • Abbott/St. Jude
  • Biotronik 

Communicating about your device

It’s helpful for you and your family to know how to explain your situation. For example, when you see doctors or dentists, you should tell them about your device so they are aware. A brief description of your implant – for example, “I have a Medtronic pacemaker” – will be helpful. Your care team can help you learn how to talk about your device. 

You will also receive an ID card you can keep in your wallet from the device manufacturer. Some survivors may feel more comfortable wearing medical jewelry in case of emergency.

Know how to contact your care team

Your clinic or hospital that handles your follow-up care will be a good resource for more information about your device, as it applies to your medical situation. 

Learn the best way to contact your care team if you have a question or concern. They may prefer calls or electronic messages for non-urgent questions. There may be specific staff members who are your go-to contacts. For example, call device nurse Suzy at xxx-xxx-xxxx and leave a voicemail.

All clinics are different, and you will learn how to navigate yours. It’s a good idea for you and your trusted family member to keep the contact information handy in your phone or your wallet. 

Where to find more support

If you feel distress related to your device or are not coping well after a situation like an ICD shock, don’t hesitate to talk to your care team about needing more support. It may be helpful to work with a mental health professional.  

You may also find it helpful to get support from others who live with an implanted device. Your hospital or clinic may offer support groups. You can also find peer support communities online, such as these patient-run grassroots groups on Facebook:  

• • Living with an ICD 
  • Living with the S-ICD 
  • Pacemaker Support Group
  • Orgullo DAI (Spanish ICD group)

Thank you to our contributors

Jasmine Wylie & Fran Lesicko