Sudden Cardiac Arrest Survivors Handbook. Resources from Minnesota partners to support recovery for patients and families

Transcription

1 Sudden Cardiac Arrest Survivors Handbook Resources from Minnesota partners to support recovery for patients and families

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3 Welcome You have gotten this booklet and kit because you are either a cardiac arrest survivor or their family or friend. Cardiac arrest survivors are an elite group; survival of sudden cardiac arrest is about 12% in Minnesota. Your survival is a miracle and we hope that this kit will help you and your family recover to your maximum potential. This booklet and bag are filled with local and regional resources you might find helpful as you get back to your everyday activities. You will find Contact information for local and regional support groups Information on how you can meet those involved with your rescue from the dispatchers, police, fire personnel and the ambulance staff that transported you Information on AEDs and CPR training Tracking sheets for medications, blood pressure and cholesterol Activities and exercise suggestions **Please note always follow the instructions of your care team to ensure the best and safest recovery for yourself or your loved one.

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5 What is Sudden Cardiac Arrest (SCA)? Sudden Cardiac Arrest can happen to anyone, anywhere, at any time. It is an electrical malfunction in the heart that causes sudden loss of blood flow usually from a cardiac condition called ventricular fibrillation. This essentially means that the bottom part of the heart is not functioning effectively so the victim suddenly goes unresponsive and may have a seizure. If treatment, which is CPR, is not initiated within 10 to 15 minutes, the victim will die. An AED will further improve the chances of survival by treating the ventricular fibrillation with a shock. SCA is NOT a heart attack, which is when a blockage limits blood flow to a portion of the heart. A heart attack can however trigger an electrical malfunction that leads to sudden cardiac arrest. SCA symptoms are immediate and life-threatening: Sudden Collapse No Pulse Not Breathing Loss of Consciousness Sudden cardiac arrest often provides no warning. Occasionally however, other signs precede SCA. Such may include dizziness, shortness of breath, weakness, vomiting, fatigue, fainting, chest pain, or palpitations.

6 CPR and AED Information Learning CPR and how to use an AED is a benefit for anyone but very important for individuals and family members living with heart conditions. There are a variety of ways to learn CPR, as easy as learning in your own home, online or classes. Here are a few resources and ideas: AHA CPR Anytime Kit - this kit can teach you, your family, friends, neighbors, and anyone else CPR in about 20 minutes in your own living room. The kit contains a DVD and an inflatable manikin that can be used again and again to learn Adult and Child CPR. Included on the DVD are also segments on how to use an AED and how to help someone who is choking. - online CPR programs include videos, simulation training and ideas on how to be better prepared for cardiac emergencies. Formal training courses these are offered by American Heart and American Red Cross. Often instructors will provide classes at local community centers, schools or other community settings. The SCA Survivors group has individuals with equipment and experience providing CPR and AED education. Contact the group if you would like more information on how they can help you with training needs.

7 CPR and AED Information Sudden Cardiac Arrest victims who receive bystander CPR and have an Automated External Defibrillators (AED) applied have an improved chance of survival. Everyone should have CPR and AED training! Learning CPR and how to use an AED is not difficult and the information can easily be shared through many venues and media sources. Most people do not require the course completion card that is achieved through traditional CPR classes. You do not need to attend an extensive or costly class to perform CPR or use an AED as a bystander. In fact, dispatchers typically will coach untrained individuals on how to perform CPR prior to emergency crews arriving. AEDs (Automated External Defibrillators) are in many public places such as stores, businesses, medical offices, schools and many more. There are many brands of AEDs but they all do the same thing which is to deliver a shock to a heart that is not beating effectively. Once they are turned on, the device has voice prompts that will take you step by step through the process. AEDs also have diagrams and pictures to make all aspects of application and use easy. An AED will only shock a very specific, and lethal, rhythm. If an AED is applied to someone who does not need it; it will not deliver a shock. The best chance for survival of SCA is when bystander CPR starts immediately and the AED is applied and delivers a shock within the first minutes.

8 How to use an AED and do CPR Cardiac arrest happens to over 350,000 people a year. Every 33 seconds in the U.S. someone dies due to a heart related incident. The survival rate nationwide is about 8%, in Minnesota only slightly higher at about 14% (2011/2012). The chain of survival includes early 911, early CPR, early AED, Advanced Life Support and Cardiac Care Centers. The most important, but often avoided, steps in a cardiac arrest are early CPR and AED use. These steps can double, if not triple, survival according to the American Heart Association. The most important thing you can do is call 911, start CPR and request an AED if one is available. Heart Attacks: this is a serious problem that requires immediate 911 response and care at a cardiac center. This is a plumbing issue but can lead to cardiac arrest. Signs & Symptoms: chest pain - middle of the chest and may extend down the left arm or into the left neck and jaw, on some it may be described as upper back pain; shortness of breath; nausea; light-headed; indigestion; pale skin and sweating. Cardiac Arrest: this is a serious problem that requires immediate action! Call 911 and start CPR. This is an electrical issue that is causing a lethal rhythm in the heart that is not producing blood flow to the rest of the body (no heart beat) including the brain. Left untreated, the person has no chance for survival. Signs & Symptoms: sudden collapse; no breathing or signs of life; may be turning ashen TAKE ACTION! - Remember doing something is always better than doing nothing! ASSESSMENT CPR AED TIPS Make sure BOTH you and the patient are safe Check the patient - tap and shout; if no response - CALL 911 Check for breathing or signs of life Begin chest compressions - compress at least 2 on the center of the chest Compress 100 beats per minute to the beat of Stayin Alive Minimize interruptions to chest compressions and lift hand between pushes Infants age 8-30 compressions and 2 quick breaths - repeat Retrieve and use as soon as possible - before CPR or upon arrival Turn on the unit - by pressing on button or opening Follow the voice prompts - remove clothing from chest and apply pads Allow the AED to analyze and deliver shock if indicated Make sure no one is touching the patient when shock is delivered Continue CPR; if no shock indicated, continue CPR until help arrives Don t be afraid. Your actions will only help. 70% of cardiac arrests happen at home - be prepared. Every minute that goes by - chance of survival drops by 10%. You can make a difference - you could save a life!!!

9 The Minnesota Sudden Cardiac Arrest (SCA) Survivor Network is a non-profit, grassroots organization whose mission is To support SCA survivors and their families Advocate for CPR education and access to AEDs Educate people about SCA and early defibrillation Formed in November 2003, the Network is affiliated with the Sudden Cardiac Arrest Association, a national organization whose mission is to prevent loss of life from Sudden Cardiac Arrest. Join Minnesota SCA Survivor Network Survivors: If you ve experienced Sudden Cardiac Arrest and were resuscitated by an AED (Automated External Defibrillator), a manual defibrillator, or an ICD (Implantable Cardioverter-Defibrillator), congratulations! You are a survivor! If you d like to join our organization, or simply learn more about us, please contact us at or mnscasurvivor@yahoo.com or go to our website and click on the How to Join tab. There is no cost to join.

10 We are an informal group and have no membership requirements. You can be as active as you choose to be. We meet every other month and have other activities such as CPR/AED education, legislative initiatives and other activities. We are well known by organizations like the the American Heart Association as the orange shirt guys because our t-shirts are orange which is symbolic for survival. We keep in touch via phone or .

11 Resources MN SCA Network developed the What to expect after SCA brochure that was included in your kit. This should answer some of the questions that you or family might have. Survivor Summit: The annual summit is a one day event that includes classes and discussion groups that cover all aspects of a cardiac arrest and recovery. Separate support sessions are dedicated to family members or caregivers who may have different concerns. Notifications are sent to members of the network and posted on the SCA survivor web page and Facebook page. Connecting with other Survivors: The survivors network connects survivors for ongoing support and discussions. Our list has 150 survivors.

12 Resources American Heart Association Support Network: this support network provides an outlet for sharing emotions, questions and concerns that people who have not had similar experiences may not understand. There is no cost to join; it is user friendly (only basic computer skills needed); you can join an existing group or create your own; and it has reliable and creditable information. Join a conversation at heart.org/supportnetwork Local Support Groups: Many hospitals and cardiac rehab units have support groups for patients and caregivers. Check with your local provider for programs near you. Your local hospital may have included a brochure in this bag for reference. Facebook Survivor Support Groups: There are several Facebook support groups Reading materials: Several SCA Survivors have written books about their experience that may be helpful to other survivors. There are many suggestions beyond these that can be found on the survivor network website. A Second Chance Surviving Sudden Cardiac Arrest Death by Patrick W. Emmett Sudden Death A Survivor s Story by Rachel Turpin-Smith with Jeff Turpin The Silent Heart a Personal Journey Back from Cardiac Arrest by Larry J. Matthews Heartmates A Guide for the Partner and Family of the Heart Patient by Rachel Freed

13 Life After SCA the National HeartRescue Project developed a website with resources for survivor, caregivers, and support groups. Sudden Cardiac Arrest Association offers several programs and resources for survivors and caregivers including the COPE program. Sudden Cardiac Arrest Foundation offers resources and a community for SCA survivors.

14 Resources American Heart Association.heart.org Ask the ICD asktheicd.com Boston Scientific bostonscientific.com Hands Only CPR handsonlycpr.org Medtronic.medtronic.com Mended Hearts....mendedhearts.org MN Resuscitation Consortium.. mrc.umn.edu MN SCA Survivors Network...mnscasurvivor.org St Jude Medical...sjm.com Youth Resources Lasting imprint..lastingimprint.org Mended Little Hearts mendedlittlehearts.org Parent Heart Watch.. parentheartwatch.org Young Adult Heart Foundations..youngadultheart.org

15 Meet your Rescuers! If you would like an opportunity to meet with the dispatchers, Police officers, Fire Fighters, and Ambulance personnel that were involved in your care we would be happy to help set that up. These responders often don t have the opportunity to receive feedback on their patients and when there is such a great outcome the rescuers are just as excited to meet you and hear your story as you might be to meet them. These meetings can be set up at a local public safety station, your home, or even at a city council meeting if you would like. Please feel free to contact the Minnesota Resuscitation Consortium at any time to set up a meeting. We understand that you may not be ready to meet your rescuers just yet but if and when you are please contact us. Phone mrc@umn.edu Mailing Address Minnesota Resuscitation Consortium University of Minnesota 420 Delaware Street SE, MMC 508 Minneapolis, MN 55455

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17 Checklists and tools You have likely been given many instructions and recommendations. Included on the next few pages are tools to help you maintain a healthy lifestyle. Current Medication List Name of medication What it s for Amount to take Frequency/time

18 Cholesterol Tracking Total Cholesterol LDL (Bad) Cholesterol HDL (Good Cholesterol Goal levels* Less than 200 mg/dl Less than 100 mg/dl 40 mg/dl or higher (men) 50 mg/dl or higher (women) Triglycerides Less than 150 mg/dl *Based on the AHA Recommended Guidelines Date Cholesterol HDL LDL Triglycerides

19 Blood Pressure Monitoring Goal levels* Systolic (the top number) Less than 120 Diastolic (the bottom number) Less than 80 *Based on the AHA Recommended Guidelines Date Time BP Notes

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21 Food Tracking How to Track Your Eating Habits There are many different ways to keep track of what you eat. We suggest that you write down the times you eat, the foods you eat, portion sizes (more or less), and make notes about what you were doing or feeling at the time. At the end of the day, review your food list (Food Diary) and ask these questions: To control hunger: Did I eat three meals? Did I have filling foods (including water) with every meal or every snack? Did I focus on fruits, vegetable and whole grains? To reduce calories: Did I keep portions smaller than my fist? Did I select skinless poultry, fish, and nuts; while limiting red meat, sugary foods and beverages? What trade-offs can I make to cut calories? Did I eat when I was not hungry? If yes, what was I feeling or doing that made me eat?

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24 Exercise Program Example MODE FREQUENCY INTENSITY TIME Walking (indoors or outdoors) Week 1 to 4 : 3 to 5 times a day Week 4 to 8 : 2 or 3 times a day Slow to moderate pace Avoid becoming short of breath Avoid hilly terrain Week 1 : 5 to 10 minutes Week 2 : 10 to 15 minutes Week 3 : 15 to 20 minutes Week 4 : 20 minutes Week 5 : 25 minutes Week 6 : 30 minutes Cycling (stationary) Week 1 to 4 : 3 to 5 times a day Week 4 to 8 : 2 or 3 times a day Little to moderate resistance Comfortable speed Avoid becoming short of breath Week 1 : 5 to 10 minutes Week 2 : 10 to 15 minutes Week 3 : 15 to 20 minutes Week 4 : 20 minutes Week 5 : 25 minutes Week 6 : 30 minutes Week 7 : 35 minutes Week 8 : 40 minutes

25 Exercise and Activities (emedicinehealth.com) The cardiac rehabilitation program is the transitional phase of cardiac rehabilitation (rehab) after you leave the hospital. The goals are to: Make a smooth transition from hospital to home. Take care of yourself after leaving the hospital. This includes taking care of your incisions if you had surgery. Get stronger and be more active. Follow your discharge instructions to avoid postsurgical complications and to prepare yourself for a more active lifestyle. Your home program will vary in length depending upon your medical history and current condition. Your rate of recovery depends on age, gender, and other health conditions. Depending on your condition and how you respond to rehab, you may stay in a particular phase or move back and forth among the various phases. There is no set length of time that you must stay in a specific phase. Home exercise program Your exercises at home depend on your medical history, clinical status, and symptoms. Discuss additional physical limitations or medical issues with your doctor before you begin any exercise program. Exercise progresses from activities of daily life to regular exercise. You will most likely walk or ride a stationary bike. Aerobic exercise A regular walking or stationary cycling program is an essential part of your home exercise program. How fast you progress will depend on your overall cardiovascular and muscular strength. Always warm up and cool down. Never exercise at an intensity that causes shortness of breath soon after open-heart surgery. Drink plenty of fluids, and avoid extreme weather conditions and temperatures. In extreme weather, you can try walking indoors at a mall or a gym.

26 Another phase of cardiac rehabilitation (rehab) is the initial outpatient cardiac rehab program. The goal is to lower your risk of future heart problems. You may take part in a supervised exercise program and receive information and tools to make lifestyle changes, such as: Not smoking. Healthy eating. Managing stress. Taking your medicines. You may also receive vocational rehab so you can return to work safely and sooner. The frequency and duration of rehab sessions for each week will vary depending upon the structure of your personal program. Exercises may vary depending on your medical history, clinical status, and symptoms, and whether you had heart surgery. You will typically exercise regularly, usually in a hospital rehab facility. This exercise includes stretching, aerobic exercise, and an introduction to strength training. Some exercise goals are to: Have more aerobic capacity. Get stronger. Learn how to monitor your own heart rate and rate your activity level. Learn stretching and strength exercises. Progress will likely be monitored by rehab staff members. While you exercise, a health professional tracks your heart rate and rhythm, blood pressure, and symptoms.

27 Stretching and flexibility Make stretching part of your warm-up and cool down every time you exercise. The benefits from an increase in flexibility are numerous. And as part of your lifetime physical maintenance program, stretching will help increase the length of time that you can continue to be active. Enjoy the feeling of relaxation as you stretch. As you do each exercise in a slow and controlled manner, focus on your breathing and become more aware of your body's range of motion and positioning. An example program: Frequency: at least 3 days a week Intensity: stretching to a position of mild discomfort Duration: 10 to 30 seconds for each stretch Repetition: 3 to 5 for each stretch Type: control and hold without resistance, emphasis on lower back and legs Aerobic exercise This phase of rehab includes a carefully monitored aerobic program that involves one or more types of exercise. Choose an exercise that you enjoy, and record how hard you exercise. Use your target heart rate (THR) and rating of perceived exertion (RPE). You will exercise within a specific heart rate range. Over time, your health care provider may suggest you increase it. Note any heart rate intensity or any signs of chest discomfort or pain, and tell your doctor and the staff who is supervising your exercise. It is suggested that you use heart rate monitors to accurately record your heart rate and exercise 10 to 15 beats per minute (bpm) below the known threshold.

28 Aerobic Exercise Example: Mode Aerobic (walking, swimming, biking) Intensity RPE: 11 to 13 (light to somewhat hard) Heart rate: within your target heart rate range 30 bpm above resting heart rate (RHR) Duration 15 to 60 minutes Frequency Minimum of 3 to 5 times a week Progression Increase HR Change mode Increase duration and endurance (gradually) Strength training Strength training has been shown to be very effective with cardiac patients for improving muscular strength and endurance as well as help in improving coronary risk factors. It also decreases the cardiac demands of daily activities such as lifting and increases your endurance capacity for other activities. Do not start a strengthtraining program without prior discussion with your cardiologists and/or primary care physician. When you are strength training, be sure to follow recommendations for correct technique, breathing, and appropriate intensity. Strength Training Example: Mode Strength training (hand weights, machines) Intensity RPE: 11 to 13 (light to somewhat hard) No straining No pain 1 to 10 pounds Duration 10 to 12 reps for each set 1 to 2 sets for each exercise Frequency 2 to 3 days a week Add following aerobic exercise Progression Increase resistance Reduce rest periods between sets Add more exercises

29 The final steps are often referred to as the maintenance phase of cardiac rehabilitation (rehab), because it emphasizes long-term lifestyle changes, such as a regular exercise program. The program will help you practice and keep healthy behaviors and habits. Your goals will be to: Learn lifestyle changes to lower your risk of future heart problems. Continue exercising to regain your physical function. Phase IV programs are usually held at a community facility or at home and will be tailored to your specific needs. Regular communication with your rehab staff or doctor for periodic reviews and assessments is an important part of phase IV. Your progress may be monitored by several rehab staff members. The number of rehab sessions you have each week will vary depending upon the structure of your program. This will focus on making lifestyle changes part of your everyday life. You will learn how to monitor your symptoms and heart rate. Ask for written instructions including how fast your heart rate should be so you can easily refer to them as you become more independent. Support throughout your life is important. Joining an exercise group or a support group for nonsmokers may be helpful in maintaining lifestyle changes. If you exercise at home, make sure a health professional checks your progress. Education and support from nurses, dietitians, physical therapists, and doctors will help you continue making lifestyle changes during this phase. In group programs, other people in the rehab program may become your support group and help you make lifestyle changes.

30 Activity Log **Follow your physician s recommendations and the direction of your care team or cardiac rehab program for all activities and exercise programs.

31 Designed with permission from advertised programs and printed by the MN Resuscitation Consortium

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