Useful Information From a Survivor to a Survivor

How do I make this journey a tad bit easier?

We know there is no one who can relate better to you than a fellow cardiac arrest survivor. We are continuing to learn what you and other survivors need in their survivorship and recovery journey. We have come up with a list of suggestions directly from survivors to aid you during this process.

Consider getting a blood pressure (BP) cuff and pulse oximeter

Discuss with your medical care team whether obtaining a BP cuff and pulse oximeter would be indicated for you. If so, these can be some of your best investments! Your blood pressure and heart rate may fluctuate after your cardiac arrest, and depending on the cause or any complications, you might have been started on medication for your heart.

During your survivorship journey, you may experience new symptoms that will (understandably) scare you and make you anxious. Having a BP cuff and pulse oximeter will help you quickly check your vital signs (heart rate, blood pressure, and oxygen saturation) and help you assess if a call to your medical care team or an emergency room visit may be warranted. Doing this will also help you keep track of any symptoms and associated vital sign changes so that you can tell your medical care team during your next visit. BP cuffs and pulse oximeters can be found at any drugstore or online shopping website.

Keep a diary of new or recurrent symptoms

As we have mentioned, you may experience a myriad of new symptoms (or maybe none at all!) after your cardiac arrest. One of the most difficult challenges as a survivor is knowing whether to attribute a new symptom to your history of cardiac arrest or to a completely different reason. Many of us will struggle with this for years after cardiac arrest, though it tends to improve with time. Please also know that thinking like this is entirely normal. 

Our cardiac arrest turned our lives upside down, and planted in us a little bit of fear of “What if it happens again? Is this new lightheadedness and heart racing a warning sign of an impending second cardiac arrest, or is it an anxiety attack?”. An episode of acid reflux might make you wonder if your heart is fluttering, or if you just had a heavy meal. You are not overexaggerating for wondering about these things. It is your brain doing its job and protecting you from a known danger. This is why a “symptom diary” often comes in handy. Take note of what the symptoms are, when they happen, how often they happen, what triggers them, how long they last, etc. In time you will start recognizing the patterns of your symptoms. When you see your medical care team, bring this diary with you. This will help them determine whether you need a further workup or just to eat a lighter dinner.

Update your medical ID on your phone

You can set up the medical ID in your phone to include important information about yourself that can be easily accessed by anyone in the event of an emergency. Information includes:

• • Medical conditions (has ICD, history of cardiac arrest, etc.)
  • Medical notes (date of your cardiac arrest(s), etc.)
  • Allergies & reactions
  • Medications
  • Emergency contacts

Accessing medical ID on an iPhone: If you press the “Emergency” button on an iPhone when the screen is locked, you can click “Medical ID” on the bottom right.

To set up your medical ID on an iPhone:

1. Go to Settings
2. Tap on “Health”
3. Tap on “Medical ID”
4. Tap on “Edit”
5. Enter your medical information
6. Scroll down to “Emergency Access” and tap the switch button next to “Show When Locked” to turn on, if you want your medical ID to be available when your screen is locked
7. Tap the switch button next to “Share During Emergency Call” to turn on, if you want your medical ID to be shared if you ever call emergency services (“911”)
8. Tap on “Done”

To set up your medical ID on an Android:

1. Open Settings
2. Tap on “Safety and Emergency”
3. Tap on “Medical Info”
4. Enter your medical information and tap “Save”
5. Tap the switch button to turn on “Show On Lock Screen”

Keep a heart journal

It can be helpful to keep all of your important information handy in a central place like a small notebook or in the notes section of your phone. Different from a symptom diary, a heart journal has updated medical history information.

This info can include things like:

• • Hospital name and address
  • Medical insurance cards
  • Updated medication names and doses
  • Your doctor(s)’ name(s) and contact info of their office(s)
  • Important phone numbers (pacemaker/ICD clinic, nurses, appointment booking phone line, etc.)
  • Appointment dates, topics, and concerns discussed at these appointments
  • Test dates (ECG, stress test, Holter monitors, etc.)
  • List of questions or concerns to discuss at your upcoming appointments as they come up

Don’t be afraid to advocate for yourself or have someone do this on your behalf

Don’t be afraid to pose questions, ask for clarification when needed, and double check things. Doctors and nurses who are part of your medical care team are incredible, but they are only human, and sometimes mistakes can be made. It’s important for you or someone you trust to always advocate for you at hospital visits and appointments.

Be consistent with your medications

A pill box is one of the most useful things you will have after your cardiac arrest. Many survivors will need to take several medications after their cardiac arrest, and most of us will experience memory issues, especially soon after the event. You don’t want to have to wonder whether you took your morning pills or not and then take double the dose, as some of these medications might slow down your heart rate, drop your blood pressure, or have other undesirable effects. There are many pill box options out there, but we strongly recommend getting one that separates your morning meds from your afternoon and/or nighttime meds. Pill boxes can be found at retail stores, local pharmacies, or online shopping sites.

Set an alarm on your phone to help you remember when to take your medications. Reminder alarms on your phone can help you remember when to take your medications and stick to a routine based on what your medical care team has recommended.

Have a strong support system

This goes without saying, but after overcoming a traumatic experience, you will need a very strong support system to be there with you during rough times. Sometimes this support might be found in your partner, your family, other survivors, or friends. You might experience little health or emotional hiccups and be frustrated with the ups and downs of recovery. Your support system will play a key role during these moments, as you might feel defeated at times (This is also very normal. If you talk to most survivors, they will tell you that they have felt angry or frustrated multiple times, and with time, each setback becomes easier to overcome).

Seek therapy or help from a mental health professional

This is probably the best advice we can give you. While we know that therapy might not be for everybody, studies have shown that practicing mindfulness leads to better outcomes after surviving cardiac arrest. Mental health professionals can help guide you in this, provide mindfulness resources, activities, and the appropriate therapy method(s) to help improve your coping mechanisms and quality of life after cardiac arrest.

Do the things you love

After surviving cardiac arrest, it is very common to stop doing certain things that you used to love out of fear of “overdoing it,” triggering another event, or even out of depression. If cleared by your medical professionals, slowly reintroduce those activities that used to bring you joy. You might like to skateboard, weightlift, paint, hike, etc. Listen to your body and take small steps to gauge your new endurance. Going back to your old routine might feel like a daring challenge (and it is), particularly at the beginning of your recovery. By slowly reintroducing what makes you happy, you will build your self confidence back (which could have been fractured by your cardiac arrest) while producing the much-needed endorphins (happy chemicals) your body craves!

Meet your rescuers

Survivors have reported meeting their rescuers to be an important step during their journey. Talking to the people that gave you chest compressions, shocked your heart, or were present during your resuscitation will often answer questions you had and will also help them through their process. Lay rescuers also go through their own process when resuscitating someone. They can also face trauma, guilt, and even PTSD.

Talk to your family members who were there for you

Oftentimes, family members are the ones who started CPR and called 911 when survivors collapsed. This experience has also turned their lives around and might have long-lasting effects on their feelings and behavior. Talking to your co-survivors will help you understand the parallel journey they are on, their fear and anxiety regarding your health, and how you can help each other navigate life after your cardiac arrest. Do keep in mind that they are on their own healing journey too, and depending on their experience, they may not be ready to discuss things right away. Don’t push these conversations, and be mindful that they may need some time before they are ready to speak about this with you.

Take all the time you need to heal

After suffering a sudden cardiac arrest, you may experience a variety of new feelings and emotions that you have never experienced before. You may not feel quite like yourself again right away. This is absolutely normal.

It is important to keep in mind that cardiac arrest is an injury, and injuries take time to heal from. In the case of sudden cardiac arrest, it is an injury that is invisible, so it is common to forget that your mind and body still need to be given the time to heal from this type of injury too. Try not to be too hard on yourself for not feeling like yourself right away or not being able to jump back into your life.

If you broke your leg and could not walk, you probably wouldn’t be angry with yourself, because you would clearly see what is preventing you from walking again right away. Experiencing cardiac arrest is a traumatic experience that affects both your mind and your body. But sometimes because there is no visible physical injury, it’s easy to forget that this injury also needs and deserves time to heal. Don’t forget to be kind to yourself as you are healing, and try to keep in mind that healing does take time. It’s not a linear process. Some days will be better than others. Just keep moving forward, and take it one day at a time.

Sources

How to use Galaxy Device in an Emergency to Contact Emergency Contacts & View Important Medical Information: https://www.samsung.com/uk/support/mobile-devices/how-to-use-galaxy-device-in-an-emergency-to-contact-emergency-contacts-and-view-important-medical-information/

Thank you to our contributors

Samantha Fernandez & Katrysha Gellis