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Heart Talk: Living with Heart Failure
Education for Patients, Families and Caregivers
Qualidigm, October 2011 – updated 2017 www.HeartTalk.org
This content has been provided by Qualidigm and its Communities of Care project. More information as well as educational videos about heart failure can be found on our website: www.Qualidigm.org or by
emailing: [email protected].
Special thanks to the Communities of Care Education Committee
and the following for their efforts and valuable input in creating this educational booklet:
Dana Alan BA Qualidigm
Carol Dietz RN, MBA Qualidigm
Shelley Dietz RN, BSN, MBA Hospital of Central Connecticut
Anne Elwell RN, MPH Qualidigm
Wendy Martinson RN, BSN University of Connecticut Health Center
Eileen McAdoo RN, MSN All About You! Home Care Services
Kerry McGuire MS, APRN Hartford Hospital
Michelle Pandolfi MSW, LNHA Qualidigm
Nancy Slocum Genesis Health Care
Lauren Williams RN, BSN
Connecticare, Inc.
What is Heart Failure?
Heart failure is:
♥ Weakness of the heart ♥ Sometimes heart failure is also called:
o Congestive heart failure o Pulmonary edema o Fluid on lungs
Symptoms (what you will be feeling) of heart failure are:
♥ Hard time breathing ♥ Swollen ankles, legs, or
belly/abdomen (sometimes doctors call it “edema”)
♥ Weak and tired
Qualidigm, October 2011 – updated 2017 www.HeartTalk.org
Can Heart Failure Be Treated? YES!
Although heart failure is a chronic disease (it will never go away no matter how good you feel) it can be treated so that you can continue to live your life. Heart Failure Can Be Treated with: ♥ Medications ♥ Procedures ♥ Surgery
Be sure to talk to your doctor to see what is the right kind of treatment for you.
Qualidigm, October 2011 – updated 2017 www.HeartTalk.org
What YOU can do!
Patients, like you have an important part in keeping yourself feeling good and out of the hospital. People with heart failure can live happy lives for many years by following these 6 steps: 1. Take the medications that your doctor gives you 2. Go to your doctor appointments 3. Monitor (watch) your symptoms (how you feel) and
weight 4. Adapt your diet (eating) and fluids (drinking) 5. Get exercise as directed 6. Limit alcohol and caffeine and do not use tobacco Each of these steps is further explained in this booklet. Keep reading!
Qualidigm, October 2011 – updated 2017 www.HeartTalk.org
Step 1: Take Your Medications!
It is important to take your medications just like the doctor told you. Your medicines may change after each doctor appointment, or when you are in the hospital.
It can be confusing, so keeping a list is very important. Be sure to share this list with all of your doctors and bring it to all of your appointments.
Patients who take their medicines as the doctor said to live longer, feel better, and spend less time in the
hospital.
Qualidigm, October 2011 – updated 2017 www.HeartTalk.org
What medicines do I need to take? Each MORNING after you wake up, follow this schedule:
Morning Medicines Medicine name (generic and name brand) and amount
Why am I taking this medicine?
How much do I take?
How do I take this medicine?
Doctor who gave it to me:
Qualidigm, October 2011 – updated 2017 www.HeartTalk.org
What medicines do I need to take? Each day at NOON, follow this schedule:
Afternoon Medicines Medicine name (generic and name brand) and amount
Why am I taking this medicine?
How much do I take?
How do I take this medicine?
Doctor who gave it to me:
Qualidigm, October 2011 – updated 2017 www.HeartTalk.org
What medicines do I need to take? Each EVENING, follow this schedule:
Evening Medicines Medicine name (generic and name brand) and amount
Why am I taking this medicine?
How much do I take?
How do I take this medicine?
Doctor who gave it to me:
Qualidigm, October 2011 – updated 2017 www.HeartTalk.org
What medicines do I need to take? Each day at BEDTIME, follow this schedule:
Bedtime Medicines Medicine name (generic and name brand) and amount
Why am I taking this medicine?
How much do I take?
How do I take this medicine?
Doctor who gave it to me:
Qualidigm, October 2011 – updated 2017 www.HeartTalk.org
What other medicines can I take?
Medicine name and amount
How much do I take?
How do I take this medicine?
If I need medicine for a headache
If I need medicine to stop smoking
If I need medicine for ___________
If I need medicine for ___________
If I need medicine for ___________
If I need medicine for ___________
If I need medicine for ___________
If I need medicine for ___________
Remember to tell all of your doctors about all your
medicines, vitamins and other medications you may get without a prescription at the drug store.
Qualidigm, October 2011 – updated 2017 www.HeartTalk.org
Step 2: Go to Your Doctor Appointments
Do not be afraid to talk to your doctor or other people in the office about any questions or concerns you may have. Always ask someone if you don’t understand something, or if you feel something is “just not right.” Your doctors and nurses are there to help and support you.
Tips to follow: ♥ Set up a doctor appointment before
you leave the hospital or other care facility
♥ Set it up on the best day and time for you ♥ Make sure you have a ride to your appointments ♥ GO TO ALL OF YOUR SCHEDULED APPOINTMENTS ♥ Bring a friend or family member ♥ Bring all medications or a medication list to all
doctor appointments ♥ Ask questions!
Heart failure is not simple. The doctor needs to see you often to keep you well.
Qualidigm, October 2011 – updated 2017 www.HeartTalk.org
Step 3: Monitor Your Symptoms (How do you feel?)
Keep these things in mind: ♥ When your body holds extra fluid (water), your
weight goes up ♥ Weight gain from fluid can start up to two weeks
before you feel other symptoms ♥ By weighing yourself every day, you can keep track
of your weight
Qualidigm, October 2011 – updated 2017 www.HeartTalk.org
Step 3: Weigh Yourself Things you will need to do: ♥ Buy a scale if you do not already have one ♥ Make sure you can read the numbers easily on the
scale ♥ Write your weight down EVERY DAY using the
charts on the next two pages or on a calendar ♥ Bring the weight chart to your doctor appointment
Remember to: ♥ Weigh yourself every morning at about the same
time o After urinating o Before having anything to eat or drink o Wearing the same
amount of clothing o Using the same scale
♥ Tell your doctor when you
gain: o 3 pounds in one day OR o 5 pounds in one week
Qualidigm, October 2011 – updated 2017 www.HeartTalk.org
Are you in the Correct Heart Failure Zone?
Use these Zones To Help Manage Your Heart Failure
GREEN ZONE
“All Clear”- GOAL
You have: • No shortness of breath –
breathing easy • No weight gain more than 3
pounds per day • No swelling of feet, ankles,
legs or stomach/belly • No chest pain
What to do: • Keep up the good work!! • Take your medicine • Eat a low salt diet • Weigh yourself every day
YELLOW ZONE
“Caution”- WARNING
You have: • Weight gain of 3 pounds in 1
day or 5 pounds in one week • More shortness of breath –
breathing harder • Harder to breathe lying down
– the need to sleep in a chair • More swelling in your feet,
ankles, legs or stomach/belly • Feeling more tired • New or unusual coughing • Dizziness
What to do: • Call your doctor or nurse:
#:_________________________ Doctor’s Name:______________ Nurse’s Name:______________
RED ZONE “EMERGENCY”
You have: • Hard time breathing • Struggling to breathe even
when resting • Chest pain or discomfort • Feeling faint
What to do: • Call 911 or • Get help and go to the
emergency room
Qualidigm, October 2011 – updated 2017 www.HeartTalk.org
Daily Weight and Zone Chart Use this chart or a calendar to keep track of your
weight and see which zone you are in each day. Share this with your doctor at your appointments.
Sunday Date: Weight: Zone:
Date: Weight: Zone:
Date: Weight: Zone:
Date: Weight: Zone:
Monday Date: Weight: Zone:
Date: Weight: Zone:
Date: Weight: Zone:
Date: Weight: Zone:
Tuesday Date: Weight: Zone:
Date: Weight: Zone:
Date: Weight: Zone:
Date: Weight: Zone:
Wednesday Date: Weight: Zone:
Date: Weight: Zone:
Date: Weight: Zone:
Date: Weight: Zone:
Thursday Date: Weight: Zone:
Date: Weight: Zone:
Date: Weight: Zone:
Date: Weight: Zone:
Friday Date: Weight: Zone:
Date: Weight: Zone:
Date: Weight: Zone:
Date: Weight: Zone:
Saturday Date: Weight: Zone:
Date: Weight: Zone:
Date: Weight: Zone:
Date: Weight: Zone:
Qualidigm, October 2011 – updated 2017 www.HeartTalk.org
Step 4: Adapt Diet and Fluids (What You Eat and Drink)
Salt is also called “SODIUM” and is found in most foods you eat. Why do you need to limit the salt (sodium) in your diet? ♥ Salt acts like a sponge and
makes your body hold onto water. Eating too much salt can cause you to gain weight, make your legs swell and cause water to go to your lungs, making it harder to breathe.
How much salt (sodium) can you have each day? ♥ The American Heart Association recommends no
more than 2,300 milligrams (mgs) a day and an ideal limit of no more than 1,500 mg per day for most adults. Please check with your doctor to see what amount is right for you.
SALT = SODIUM and SODIUM = SALT
Qualidigm, October 2011 – updated 2017 www.HeartTalk.org
Reading a Nutrition Label Sodium = Salt
Here is an example of a nutrition label. Always check to see how many servings are in the box or can. If you eat a portion larger than the serving size, you end up eating more salt than is listed on the label.
Your goal is to LOWER the amount of salt (sodium) you eat. Sodium (salt) is found in many foods, in addition to the salt you may add to your foods:
1 teaspoon salt = 2,300 mg sodium 1 teaspoon baking soda = 1,259 mg sodium 1 teaspoon baking powder = 488 mg sodium 1 teaspoon MSG = 700 mg sodium
Qualidigm, October 2011 – updated 2017 www.HeartTalk.org
Reading a Nutrition Label Sodium = Salt
It is important that you read food labels to find out the sodium content of foods. It may also be helpful to know that the government ruled that some words used on labels must mean what they say: Key words: Meaning: “Sodium Free” (or “salt free”) Very little salt (less than 5 mg per
serving) “Very low sodium” 35 mg sodium or less per serving “Low Sodium” 140 mg sodium or less per serving “Less Sodium” 20% sodium reduction from original “Reduced Sodium” At least 25% reduction from the
original “Light in Sodium” 50% sodium reduction from the
original “Unsalted”/ “Without added salt” No salt added during process “No salt added” No salt added during process
Qualidigm, October 2011 – updated 2017 www.HeartTalk.org
Foods High in Salt
These foods should be avoided or limited: Canned foods/soups Frozen dinners Deli meats Hot dogs Jar tomato/pasta
sauce Pickles Sausages and Kielbasa
Potato chips Ham and Bacon French fries Sea salt Adobo seasoning Salad dressings Cheeses Soy sauce
Tips To Keep You Eating Healthy: ♥ If you do eat salt, tell your doctor:
o Medications may need to be adjusted o More doctor visits may be needed o You may need to talk with a diet specialist,
commonly called a dietitian ♥ If you eat out, choose heart healthy foods. A few
suggestions are: o Order baked or broiled foods (chicken, fish and
steamed vegetables) o Ask for a salad dressing, sauce or gravy on the
side
Qualidigm, October 2011 – updated 2017 www.HeartTalk.org
Step 4: Adapt Diet and Fluids (What You Eat and Drink)
Drinking Too Many Fluids?
Most people with heart failure can drink normal amounts of fluid. Do not restrict your fluids unless you are told to do so by your doctor.
By staying away from salt and watching your fluid intake in your diet, you can live longer, feel better, and
spend less time in the hospital.
Qualidigm, October 2011 – updated 2017 www.HeartTalk.org
Step 5: Exercising and Keeping Active
In general, exercising, having sex and driving are OK. Make sure to talk to your doctor about what kind of exercise is safe or good for you. Tips to follow for exercising and having sex: ♥ Follow the treatment plan your doctor gives you ♥ Wait at least 1 hour after eating before exercising
or having sex ♥ Stop and rest for a while if you get tired or have a
problem ♥ Pace yourself ♥ Choose a time when you feel your best
Qualidigm, October 2011 – updated 2017 www.HeartTalk.org
Write down the exercise goals your doctor told you here and follow this schedule:
Doctor Ordered Exercise Routine Exercise Goal(s):
Day Time Activity Length While
exercising I felt:
After exercising I feel:
Qualidigm, October 2011 – updated 2017 www.HeartTalk.org
Step 6: Limit Alcohol and Caffeine
Alcohol: If you are allowed to drink alcohol, have no more than: ♥ 2 drinks a day (for men) ♥ 1 drink a day (for women)
One drink is: ♥ 1 ½ shot glasses of 80 proof or 1 shot
glass of 100 proof alcohol ♥ 5 oz glass of wine ♥ 12 oz bottle of beer Alcohol can make your heart failure worse. It can also
affect your medicines. Caffeine: Caffeine is usually OK in moderation (always check with your doctor). If allowed, have no more than: ♥ 1 or 2 cups per day
Qualidigm, October 2011 – updated 2017 www.HeartTalk.org
Step 6: Do NOT use Tobacco
Tobacco Use: ♥ If you smoke (cigarettes or cigars), please STOP!
o It is bad for anyone, but especially for those with heart failure
o It makes the heart work harder o It can lead to heart attacks
♥ Ask your doctor or nurse about help to quit smoking
Qualidigm, October 2011 – updated 2017 www.HeartTalk.org
Healthcare Planning for Your Future
Who will speak for you, if you can’t speak for yourself?
♥ 90% of Americans have heard of a living will1 ♥ 71% of Americans have thought about their end-of-
life preferences1 ♥ Only 29% of Americans have a living will1
Without a plan, your healthcare team won’t know your wishes, and your family may not know what to do. Healthcare planning for your future, also known as “Advance Care Planning,” is about conversations and decisions. It is for people of all ages. Advance care planning lets your family and healthcare team know what your choices and wishes are. It allows you to remain in control of your care should you become very sick. Plans for your future healthcare are documented on papers called Advance Directives.
1 www.nhdd.org
Qualidigm, October 2011 – updated 2017 www.HeartTalk.org
ADVANCE DIRECTIVES Advance directives are legal papers that tell others what you want for your medical care when you can’t speak for yourself. Advance directives are used only if you can’t speak for yourself. An advance directive has two parts:
1. a living will 2. a durable power of attorney for health care
Living Will Durable Power of Attorney for Health Care
Is a legal paper(s)/document
Is a legal paper(s)/document
Is used when you can’t speak for yourself
Is used when you can’t speak for yourself
Tells your doctors what care you want if you are dying or permanently unconscious and cannot make decisions about emergency treatment
Names someone to make medical decisions for you only when you cannot speak for yourself. The person you name is called a healthcare proxy
Is for health care choices only
A proxy can be chosen in addition to or instead of a living will
Is created while you are alive and able to speak for yourself
Is created while you are alive and able to speak for yourself
Qualidigm, October 2011 – updated 2017 www.HeartTalk.org
When choosing a DURABLE POWER OF ATTORNEY FOR HEALTHCARE, choose someone you trust to follow your wishes. This person might be a:
Family Member Close friend Priest
Minister Rabbi Lawyer
DOCUMENTING EMERGENCY CARE CHOICES You have choices about how you want to be treated when there is no longer a cure for your condition or when you are dying. You can make those decisions now while you are alive and well. You can document these decisions in your living will. These decisions are about doctors using emergency treatments to keep you breathing and your heart beating:
cardiopulmonary resuscitation (CPR) ventilator use (breathing through a tube) artificial nutrition (tube feeding) or artificial hydration
(intravenous fluids) The following table helps explain each of the above - what it is, when it is used and why it is used.
Qualidigm, October 2011 – updated 2017 www.HeartTalk.org
EMERGENCY TREATMENTS
CPR (cardiopulmonary
resuscitation)
Ventilator Use
Artificial Nutrition (tube feeding)
or Artificial Hydration
(intravenous fluids) Used after your heart stops.
Used when you can’t breathe on your own. Machines do the breathing for you.
Used if you can’t eat or drink.
Doctors/nurses push hard on your chest again and again. Doctors/nurses blow air through your mouth into your lungs.
A tube connected to a ventilator machine, is put down your throat and pushes air into your lungs. Medicines keep you sleeping, while the tube is in your throat.
Tube feeding: A tube placed up your nose and down your throat, is used to feed you. If using for a long time, surgery is needed to put the tube into your stomach, instead. Intravenous fluids: A tube is placed in your vein to give you fluids.
CPR may re-start your heart, and these actions may also break your ribs or collapse a lung. Doctors/nurses may also use medicines or electric shocks to help re-start your heart.
After a few days, if you can’t breathe without the ventilator machine, doctors may put a tube into your throat through a hole in your neck instead. You can stay awake then, but can’t talk without special help.
The use of tubes for feeding or fluids can be uncomfortable if near death.
Qualidigm, October 2011 – updated 2017 www.HeartTalk.org
DO NOT RESUSCITATE ALLOW NATURAL DEATH Do Not Resuscitate (DNR), also referred to as Allow Natural Death (AND), is another way to tell your doctors and healthcare team what your wishes and choices are for treatment when there is no longer a cure for your condition or when you are dying.
DNR and AND promotes comfort and dignity. It means supporting you in your choice to die when nature determines it is your time.
It means that no emergency treatments will be used if your heart stops or you stop breathing.
Other choices you may have to make are included on the next page:
Qualidigm, October 2011 – updated 2017 www.HeartTalk.org
Hospitalization Your time in the hospital may increase and occur often during the last months of life. Comfort Care Comfort care includes treating symptoms that make you uncomfortable and providing support– for example: managing shortness of breath, limiting medical testing, providing spiritual and emotional counseling, and giving medication for pain, anxiety, nausea, or constipation.
Comfort care includes…
Palliative Care Hospice Care
Focuses on improving quality of life for both the patient and the family
Relieves suffering and also focuses on improving quality of life for both the patient and the family
It is appropriate at any age and at any stage in a serious illness
It is appropriate at any age and is provided during the patient’s final days, weeks or months
Care is provided by the entire healthcare team
Care is provided by the entire healthcare team
Can be received in many care settings; including your own home
Can be received in many care settings; including your own home
Can be provided along with curative treatment
After death, the hospice team continues to offer support to your family
Qualidigm, October 2011 – updated 2017 www.HeartTalk.org
Making decisions, having the conversations and planning for your future (advance care planning) is an important step in letting your healthcare team and family know your wishes. Many choices are available to you and your family. These choices will keep you in control of your life. Planning now rather than later will make difficult decisions easier for you and your family. ___________________ The above information has been adapted from the National Institute on Aging website http://www.nia.nih.gov/health/publication/advance-care-planning
ADVANCE CARE PLANNING RESOURCES The following websites have further information and resources for you and your family when discussing your advance care plans:
A website about the importance of advance care National Health Care Decisions Day: planning www.nhdd.org (USA) www.AdvanceCarePlanning.ca (CANADA)
Approaches to end-of-life Medical/Physician Orders for Life Sustaining Treatment: planning that focus on patients’ wishes for care they receive http://www.polst.org/ (National – POLST) https://www.compassionandsupport.org/index.php/for_patients_families/molst
(MOLST)
A legal living will form in 42 states and available in 26 Five Wishes Document: languages www.agingwithdignity.org/5wishes
National Institute on Aging: ederal website dedicated to aging research and Fresources http://www.nia.nih.gov/health/publication/advance-care-planning
Qualidigm, October 2011 – updated 2017 www.HeartTalk.org
Make These Steps A Permanent Part Of Your Life!
Following these 6 steps and anything else the doctor and nurse tell you to do will pay off for you! You can stay active and enjoy a quality life by following their advice. We know that it can be hard. If you are having trouble following the advice of the doctor, please do not change anything – instead, talk to your doctor or nurse for help! Write down any problems you are having or questions that you would like to ask your doctor or nurse. Remember to bring them with you to your doctor appointments to get some answers. Things that are hard for me and questions I have: 1) __________________________________________
2) __________________________________________
3) __________________________________________
4) __________________________________________
5) __________________________________________
Qualidigm, October 2011 – updated 2017 www.HeartTalk.org
Remember These 6 Steps To STAYING HEALTHY!
1. Take the medications that your doctor gave you. 2. Go to your doctor appointments. 3. Monitor (watch) your symptoms (how you feel) and
weight. 4. Adapt your diet (eating) and fluids (drinking). 5. Get exercise as directed. 6. Limit alcohol and caffeine and do not use tobacco.
Patients who follow these steps live longer, feel better, and spend less time in the hospital.
Qualidigm, October 2011 – updated 2017 www.HeartTalk.org
Heart Talk Video
A FREE video on how to live with heart failure is available at www.HeartTalk.org.
Heart Talk: How to Live with Heart Failure is a
video created for patients living with heart failure, their families and caregivers. A doctor explains
how you can feel and live well with heart failure, including tips on how to stay healthy and how to
stay out of the hospital.
To watch the video, go to the website: www.HeartTalk.org and scroll down to Series 3. The video
will play like a movie on your computer.
This booklet and the video have the same
information so you can follow along as you watch.
Qualidigm, October 2011 – updated 2017 www.HeartTalk.org
Many FREE resources and videos on how to
live with Chronic Obstructive Pulmonary Disease (COPD) are available
at www.LungTalk.org.
Lung Talk: How to Live with COPD is a video series and resource website created for patients living
with COPD, their families and caregivers. Medical professionals and patients explain how you can
feel and live well with COPD, including tips on how to stay healthy and how to stay out of the
hospital.
To watch the videos and explore the resources, go to the website: www.LungTalk.org.
Qualidigm, October 2011 – updated 2017 www.HeartTalk.org
This material was prepared in collaboration with Qualidigm, the Medicare Quality Improvement Organization for Connecticut, under contract with the Centers for Medicare & Medicaid Services (CMS), an agency of the U.S. Department of Health and Human Services. The contents presented do not necessarily reflect CMS policy. Pub #CT-800100-2011052. The views and opinions expressed here do not reflect the policy or position of the Centers for Medicare and Medicaid Services, nor of Qualidigm. Examples and information provided are for educational purposes only and should not be construed as medical advice. Any person with questions or concerns relating to any medical condition or treatment should consult with a qualified health care professional.
Qualidigm, October 2011 – updated 2017 www.HeartTalk.org
(860) 632-2008 Fax: (860) 632-5865
www.Qualidigm.org
Questions? Email us at [email protected]