Heart Failure Patient Self-Management Workbook

CHAPTER 5:
Working with your doctor

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BE AN ACTIVE PARTICIPANT ON YOUR HEALTH CARE TEAM

Communication, openness, honesty, and collaboration are the keys to any good relationship. Whether it is you or your loved one that has been diagnosed with heart failure, you’ll want to have this kind of a relationship with a physician and other health care providers.

PREPARING FOR A DOCTOR VISIT

You need regular doctor visits to help control your heart failure. You can ask your doctor how often you should have a routine office visit, even if you do not feel sick. It is important to keep all of your doctor appointments.

  • Know your medical history.
  • Write down the reason you are going to the doctor. This may be a routine visit or because you are sick. If you are sick, also write down the symptoms you are having as well as how they have progressed over the past few days.
  • Bring your Daily Health and Exercise Logs with you. This will provide your doctor with an accurate picture of how you are managing your condition.
  • Make a list of any symptoms you have experienced.
  • Share your concerns and fears.
  • Prepare a list of questions and listen carefully to the answers. Write them down, leaving a space for the answers.
  • Be honest with your doctor… never withhold information. Be up-front about whether the physician’s recommendations about diet, exercise, lifestyle adjustments, and taking medications are being followed. If not, the physician might be able to help.
  • Take notes! If a test or treatment is ordered, make sure you understand what it is, and why you are having it. If you are not sure you understand, ask your doctor to review it again.
  • Bring a friend or family member to your appointment.
  • Be sure your doctor understands what you are saying.
  • Don’t leave until you understand all the doctor’s instructions, especially concerning medications. Know which drugs you need to take, when and how often you should take them, and in what amount. Ask about any side effects that may occur, and what can be done about them.

QUESTIONS TO ASK YOUR DOCTOR:

  • What are the early signs or symptoms of a problem?
  • What symptoms are normal for me?
  • How should I adjust my medicationswhen I have these symptoms?
  • When should I contact you about a problemor a change in my symptoms?
  • What are the signs of an emergency?
  • How often should I see you for routine office visits?
  • What are other reasons to call you?

MAKE YOUR DOCTOR VISIT COUNT

Routine office visits often seem too short. Don’t hold anything back because of embarrassment. Remember, your doctor can help you best when you explain what is going on.

Whether you have heart failure, or care for someone who does, certain strategies can help you make the most of doctor visits:

  • Discuss your main problem first.
  • Go over how long you have had the problem.
  • If you are getting any medical treatment from another source, let your doctor know. This includes over-the-counter remedies and complementary/alternative medicines and therapies (i.e., herbs, etc.).
  • Be realistic about how much you can get done
    during a short appointment.
  • If your problem is complicated or if you don’t feel satisfied that all of your questions have been answered, DO NOT BE AFRAID TO ASK FOR A LONGER APPOINTMENT.
  • Ask your doctor or nurse to write down any instructions about self-care, such as medication schedules, next appointment, etc.

IF YOU FORGET WHAT THE DOCTOR SAID…

Don’t be embarrassed to call back! Write down what you want to ask and then write down what your doctor tells you. Play an active role!

WHEN YOU NEED TO CALL YOUR DOCTOR, BE PREPARED

If you have a problem or a question for your doctor or the staff, here are some helpful tips before calling the office:

  • If you are having a problem, write down how you feel and the time the problem started. Make a note of any symptoms you are experiencing, especially new or worsening symptoms:
    Weight gain of 2 pounds in a day or 5 pounds in a week
    Chest pain or pressure
    Dizziness or fainting
    Shortness of breath
    Swollen feet, ankles or legs
    Abdominal pain or swelling
    Trouble sleeping
    Constant cough or wheezing
    Loss of appetite or nausea
    Extreme tiredness or fatigue
    Increased heart rate
    Memory loss, confusion or disorientation
  • Have your list of symptoms handy when you make
    the call.
  • What were you doing when the problem started?
  • Have your prescriptions and any over-the-counter medications you have taken or are presently using.
  • Write down any questions you want to ask the doctor.
  • Have your calendar handy in case you need to schedule an appointment.

IF YOU NEED TO LEAVE A MESSAGE

  • Tell the person who answers that you have a problem, and that you would like to talk with the doctor or nurse. If you think your problem is getting worse, let the person you are speaking with know that this is a “very important” call about your medical condition.
  • If the doctor or nurse cannot speak with you immediately, ask to have them call you back as soon as possible. Try to find out when they are most likely available.

COMMON CONCERNS ABOUT HEART FAILURE

These are some typical concerns that people with heart failure often have. We offer them as suggestions to help you draw up a list of questions for the physician or health care team.

  • What is my or my family member’s diagnosis? Is the heart failure mild? Moderate? Severe?
  • What should we expect within the next few weeks, months, and years? What is the likely progression of the condition?
  • What are some specific ways that daily life will change? Can I or my family member still work, play golf, have sex, do the laundry, (fill in whatever activity you’re wondering about)?
  • What are the three most important things we can do to manage this condition?
  • What strategies have other patients found useful for motivating themselves to eat better, exercise, stop smoking, etc.?
  • What will happen if I or my loved one slips back into old habits?
  • Do you recommend a cardiac rehabilitation program? If so, where will it take place? How often?
  • We’re having trouble keeping the medication schedule straight. Is there any way we can simplify it?
  • A certain medication is causing side effects that are difficult to deal with. Is there some way to minimize those side effects? Is there another equally good medication available?
  • What if the health insurance plan doesn’t cover the treatment or medication you’re recommending? What’s our next step?
  • If any symptoms seem to get worse or change
    suddenly, what’s the best way for us to contact you?

THE MEMBERS OF YOUR HEALTHCARE TEAM

Most of us get used to seeing just one doctor – and visit only once a year or every couple of years. People with heart failure often work with a large number of different specialists, especially as their condition progresses (although some patients are managed by just one doctor). Each professional brings special skills and expertise to the healthcare team.

Your health care team may include:

  • Your primary care doctor, usually a general internist or family physician, provides your routine preventive healthcare (including physical exams and basic tests) and is the first contact when medical problems arise. In most cases, he or she remains in charge of overall care and is the main contact for questions and advice.
  • Your cardiologist, a doctor who diagnoses and treats heart problems.
  • Surgeons and other specialists, if needed and recommended by your primary care doctor or cardiologist.
  • Clinical nurse specialists, nurse practitioners, other nurses and physician assistants who give care, perform tests, and provide information, education and counseling.
  • Physical and occupational therapists who assist with the cardiac rehabilitation program and help develop an appropriate exercise plan.
  • Mental health professionals who can help you and your family deal with emotional stress, anxiety or depression.
  • Social workers and case managers who help with complex financial, legal and other types of issues such as insurance coverage, developing an Advance Directive, and finding social support services.
  • Pharmacists who fill your prescriptions are an excellent resource for information about medications. They can tell you if a drug interacts badly with cer tain foods or with other drugs, including nonprescription ones. They also
    can help you understand package inserts and label instructions.

KNOW THE WARNING SIGNS

If you or a family member has heart failure, chances are you’ve already made a trip to the emergency room, or at least spent some time in the hospital. And you’d like to avoid going through that again.

You can decrease the chances of another hospital admission by getting in touch with the physician right away if any of these warning signs appear:

  • Sudden weight gain (2 or more pounds in a day, 5 or more pounds in a week, or whatever amount the doctor told you to report)
  • Chest pain or pressure
  • Dizziness or fainting
  • Shortness of breath not related to exercise or exertion
  • Increases in swelling of the legs, ankles, or feet
  • Swelling or pain in the abdomen
  • Trouble sleeping (waking up short of breath, using more pillows)
  • Frequent dry, hacking cough
  • Loss of appetite or nausea
  • Increased tiredness or fatigue
  • Increased heart rate
  • Memory loss, confusion or disorientation

Post the phone numbers for your primary care physician and cardiologist by your telephone, along with a list of current medications, other medical conditions, and allergies. That way you can get in touch quickly if your condition changes. If caught early enough, these symptoms may simply require an adjustment in medication, which often can be done over the phone.

QUICK TIPS

  • Ask your physician and pharmacist about whether your medications might interact badly with certain foods or other drugs you’re taking (both prescription and over-the-counter).
  • If you need advice on financial, legal and family issues, ask the healthcare team to refer you to a social worker or case manager. They also can assist with finding outside help for household tasks and deciding whether or not to go to a nursing home or retirement community.
  • Use the Daily Health Log and Exercise Log to record your daily weight, any observations about symptoms, and activity level. That way you’ll have a handy reference to bring with you to doctor appointments.
  • Post the phone numbers for your primary care physician and cardiologist by your telephone, along with a list of your current medications, other medical conditions and allergies. Call the doctor right away if you experience a sudden change or your symptoms get worse.
  • Before a doctor appointment, sit down and prepare a written list of questions and concerns.
  • Take notes during doctor visits so you can review key information and instructions later.
  • Some patients find it helpful to bring along a family member or friend to doctor visits – for help with note taking, understanding doctor’s instructions and moral support.
  • Be honest about whether or not you’re following recommendations about diet, lifestyle and taking medications. The health care team often can suggest strategies to help you get on track.
  • When discussing treatment options, make sure to ask about costs and insurance coverage.
  • Keep asking questions until you fully understand the doctor’s instructions for taking medications – when, how often and in what amounts.
  • If you don’t understand a word, concept or direction, ask your doctor for another explanation.
  • Ask your doctor to be up-front with you about what you can expect to happen over the next few weeks, months and years.
  • Ask your doctor to identify the three most important things you can do to manage your condition.

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