A Guide for Survivors Receiving a 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 your loved one leaves the hospital if they have an ongoing risk of arrhythmia or abnormal heart rhythm.

Types of implanted devices  

There are many different types of devices. The specific device your loved one may receive will depend upon their 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 the 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 your loved one may have will be specific to this type of device. More information about the S-ICD can be found 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. It may also be 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 loved one’s hospital is a study site, they could be offered the EV-ICD.

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

Procedure and Recovery

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

Your loved one will be given information on recovery and incision care before discharge. It’s important to follow these instructions to ensure they heal well with no complications. Your loved one may have temporary restrictions on bathing or activities while healing. Make sure they know who to contact if they 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 loved one’s lifestyle. Activities such as exercise will depend mostly on their health situation, not the device. 

Your loved one’s 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 their device settings (“programming”) are needed, these will be done in the office. For some devices, a check may include pacing your loved one’s 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 your loved one can go home the same day, though this will depend on their individual situation.   

Many implanted devices have alert tones or vibrations to let the survivor know if something is wrong and if they need to seek care. Your loved one should ask their care team about their alerts. While alerts are not common, it’s helpful if your loved one is familiar with the sound, feeling, and how to respond.

Understanding ICD Shocks

While shocks can be lifesaving, they can be stressful and confusing for you, your loved one, and other family members. 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. The care team should provide your loved one with information specific to their situation. Ask for this information if it was not provided at discharge. 

Here are some tips so that your loved one can feel prepared: 

• • Be educated: Your loved one should learn as much as they 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 their anxiety and help them to cope more effectively.  They may also want to join a support group of ICD patients.  
  • Keep information handy: Three sources of information are important to have available: an ICD identification card, a list of medications, and the doctor’s name and phone number. This information will allow healthcare providers to take the best possible care of your loved one in an emergency.
  • Make an action plan: Preparing for an ICD shock might involve rehearsing what you and your loved one should do if they were to receive a shock. The doctor may have a specific plan for your loved one. A sample shock plan can be found here. Your loved one’s may be similar.

The manufacturer of the survivor’s device is a reliable resource

Once you know what type of device 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 loved one’s device. Be sure to fact check any information you or your loved one 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 that can be found on the manufacturers’ websites: 

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

Communicating about the device

It’s helpful for you, your loved one, and other family members to know how to explain the situation at hand. For example, when your loved one sees doctors or dentists, they should tell them about their device so they are aware. A brief description of your loved one’s implant – for example, “They have a Medtronic pacemaker” – will be helpful. The care team can help your loved one learn how to talk about their device. 

Your loved one will also receive an ID card they can keep in their wallet from the device manufacturer. Some survivors may feel more comfortable wearing medical jewelry in case of emergency.  

Know how to contact the care team 

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

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

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

Where to find more support

If your loved one feels distress related to their device or is not coping well after a situation like an ICD shock, they shouldn’t hesitate to talk to their care team about needing more support. It may be helpful to work with a mental health professional.  

Your loved one may also find it helpful to get support from others who live with an implanted device. Their hospital or clinic may offer support groups. They 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