You, or your loved one, have gone through a very stressful event—a cardiac arrest—and are now a cardiac arrest survivor. Or, you may be a co-survivor, on a parallel journey. Being a survivor has long term effects. These can be with your heart, your brain, or other organs. Being a co-survivor also has long term effects. We will describe some things to expect as you continue to recover. However, everyone’s recovery is different, and you may have some, all, or none of the effects we have listed below. Please seek out support as needed when questions or concerns arise.
What to expect when you go home
Leaving the hospital and returning home after cardiac arrest is a major step towards recovery. However, the in-hospital portion of your care is only one step in the recovery process and your recovery can sometimes take several months or more.
When you leave the hospital, you may need support to complete the physical things you need to do (such as chores, driving, etc.). This can be challenging. You may need to take off from work for some time after discharge. Please ask your doctors about how long you must be off work. You may have other physical restrictions such as abstaining from sexual intercourse or not being allowed to drive for some time. Usually, these restrictions are temporary. You may have been given a post-discharge rehab plan. Following this plan can help you return to your activities sooner.
Cognitive/ thinking issues
Some post cardiac arrest survivors notice more difficulty with their thinking when they go home as compared to when they are in the hospital. This is normal. It may be related to a more complex environment at home. You may be asked to avoid certain tasks until you can complete them. For example, you may be asked to not be alone at home or not make financial decisions until you are ready to do so. Generally, post cardiac arrest survivors see a gradual improvement in these difficulties over about one year. Many survivors make a full recovery sooner.
You may have emotional needs after you leave the hospital and go back to your daily activities. Going home or back to work may trigger some of these. Other post cardiac arrest survivors have feelings later, such as 3-6 months after leaving the hospital. These feelings are common and normal. Although these may be managed independently, many survivors feel better after seeing a mental health professional and starting therapy/ medications.
You may have spiritual questions after your cardiac arrest. This is normal. We recommend that you speak to your faith advisor, another mentor, or another cardiac arrest survivor. Many survivors find support in survivor networks.
Being a cardiac arrest survivor is new unchartered territory and some cardiac arrest survivors and family members have noticed social concerns after leaving the hospital. These can include issues with insurance or their job or difficulty obtaining medical care. If you find concerns such as these, you should contact your PCP or other caregivers to be referred to outpatient services. Some survivors’ insurance plans allow for case managers who can help, as well.
As a co-survivor of a cardiac arrest survivor, you are more than a caregiver. You may have many of the same issues as your loved one, or different ones specific to you. Particularly, emotional and spiritual issues can be significant. You should not ignore or dismiss these—they are a natural part of the process of being a co-survivor and part of your healing. Some co-survivors find support in other co-survivors while others find therapy to be useful.
Cardiac arrest survivor support groups
There are several organizations focused on cardiac arrest survivors and co-survivors, such as the Sudden Cardiac Arrest Foundation. Additionally, there are Facebook and other social media groups for survivors and their family members. Finally, your treating team may have a list of survivors who are willing to speak with you.
Reasons to call your doctor or go to the Emergency Department
During your recovery, you may have certain new symptoms. While many are not dangerous, some of these can be a sign of more severe problems.
For example, if you develop any of the following symptoms, you should call 911 or go to the nearest Emergency Department:
- New chest pain
- New shortness of breath
- Coughing up blood
- Severe sweatiness
- New dizziness or vertigo (a sensation of spinning).
Additionally, if you develop any of the following symptoms, you should call your doctor for advice:
- Difficulty with walking
- Lack of coordination
- Change in vision
- Worsening memory or concentration issues
- Depression or anxious mood (in yourself or your family member).
Questions? Contact info [at] sca-aware.org.
Prepared by: Ankur A. Doshi, MD, FACEP, Co-Director – UPMC Post Cardiac Arrest Service and University of Pittsburgh Center for Cardiac Arrest Survival Member – Sudden Cardiac Arrest Foundation Board of Directors, and Mary M. Newman, MS, President, Sudden Cardiac Arrest Foundation.