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Talking to Health Care Providers


Hemophilia Treatment Center: More Than Just A Treatment Center

Talking to Health Care Providers

You are a member of your own health care team. Right now you are a key player, but eventually, you will want to be the team leader. To be a leader, you need to show your health care team that you understand your bleeding disorder and how to treat it. You can start by talking to your health care providers without your parents’ help. In fact, you might have questions that your parents never thought to ask.

In this section of Next Step, you’ll find:

Preparing for Your HTC Visit

First, find out why you’re visiting the Hemophilia Treatment Center (HTC). Is it for a routine checkup? Is it for special treatment? Knowing the reason ahead of time will help you to get ready and make you more comfortable.

Here are some other suggestions to help you get ready for your appointment:

  • Keep a treatment journal. It will help you understand more about your own body. (There are many mobile phone apps available if you prefer to keep a journal this way.)
    • Write down:
      • When a bleed happened.
      • What you were doing when it happened.
      • The signs that you were having a bleed.
      • The type of treatment you needed to stop the bleed.
  • Bring your treatment journal to the appointment.
    • A good record of bleeding episodes often helps the medical team and the person with a bleeding disorder see how well a treatment is working. If needed, the treatment can be adjusted. The goal is to have fewer bleeds. The result: your life is much less disrupted.
  • Write down the questions you want to ask and any information you want to share with your health care team.
  • Bring a favorite book to read or game to play between appointments at the HTC.
  • Practice relaxation techniques. Deep breathing will help calm you if you begin to feel nervous or anxious about your appointment.
  • Stay positive. Remember: getting treatments and checkups regularly are ways to help you stay healthy.

What to Do During Your HTC Visit

During your appointment, take the time to talk to your health care providers. They will be giving you important information about your bleeding disorder, and you’ll have a chance to ask them a lot of questions.

Here are some things to keep in mind during your visit:

  • Bring your treatment journal to the appointment.
  • Ask any questions you had written down since your last visit. If you’re a bit nervous, you can also just show the staff your questions.
  • Tell your health care providers how you’ve been feeling both physically and emotionally.
    • Be honest. Your health care team needs to know so they can give you the proper treatment.
  • Ask your health care provider to explain any information that’s not clear.
    • It’s okay to ask the same question over and over until you understand.
    • If you don't know what a medical word means, ask your health care provider to explain it in simple words.
  • If you think you’ll forget, ask to have information and instructions written down.
  • Ask where you can find more information if there are things you don’t understand.
    • Does your treatment center have brochures they can give you?
    • Find out about events specifically for people your age with bleeding disorders.
  • Ask to spend time alone with your health care provider. You may want to ask some questions without your parents in the room.

What to Do After Your HTC Visit

If it's important call your nurse coordinator.

  • Write down anything you may have forgotten so you can bring it up next time.
  • Research the information your health care provider gave you so you can better understand your bleeding disorder.
    • You’ll find a lot of good information right here on Steps for Living!
  • Always follow the advice given to you by your health care providers.

Meet Your HTC Team

It’s important to be able to name and describe the roles of your health care team. Not every person with a bleeding disorder needs to see each of these health care professionals. While not every Hemophilia Treatment Centers (HTC) has all these specialists on staff, most will be able to refer you to one.

Here are some members of your hemophilia treatment team:

  • Hematologist. A doctor who is an expert in blood problems. The hematologist may be your main doctor.
  • Nurse coordinator. A nurse coordinator is often the link between the person with a bleeding disorder and the whole health care team. Remember, the nurse coordinator wants to hear from you! Nurse coordinators want to answer your questions, especially if you think you might have a bleed.
  • Dentist. The dentist is an expert in teeth and gums but not all dentists treat patients with bleeding disorders. Your HTC may have a dentist or you may have to find a specialist dentist in your area.
  • Genetic counselor. A genetic counselor helps individuals understand bleeding disorders and how they may be inherited. Speak with your parents about why you have a bleeding disorder or ask a genetic counselor or other HTC team member for information. See whether other family members might benefit from being tested to find out if they are carriers of, or could be affected by, a bleeding disorder.
  • Social worker. A social worker helps a person with a bleeding disorder and his or her family deal with the impact of having a bleeding disorder in everyday life. The social worker helps prevent problems in your life, not just problems in your body. Remember, preventing a problem is often easier than dealing with one.
  • Orthopedist. An orthopedist is a doctor who is an expert in diseases of the bones and joints.
  • Physical therapist. The physical therapist tests joints and muscles to measure how well they move. The physical therapist can also provide exercises and help restore any loss of strength or range of motion loss.
  • Occupational therapist. The occupational therapist will help you figure out ways to manage everyday tasks with any limitations you might have.

What Happens at a Comprehensive Care HTC Visit?

A Hemophilia Treatment Center (HTC) provides comprehensive care that addresses all issues related to the bleeding disorder, as well as education about the disorder.

Here are some examples of what may take place at a comprehensive care HTC visit:

  • The health care team gets a detailed history of your bleeding episodes, treatment, and other medical issues.
  • The team will answer questions and develop a plan with you and your family for treatment and education.
  • Blood is drawn; laboratory studies are done and the test results are reviewed to see if they will affect your treatment.
  • Physical exams, other tests, and imaging studies are performed, if needed.
  • The physical therapist will check out your muscle strength and how well your joints work, and will recommend follow-up visits for physical therapy, if needed.
  • The social worker will meet with you and your family to help identify problems and find solutions.
  • You’ll learn about research that’s being done on new treatments for bleeding disorders.
  • You might be asked if you want to take part in studies on bleeding disorders.
  • Reports will be prepared and provided following the clinic visit.

What to Know When Going to the Emergency Room (ER)

Sometimes you may have to go to the emergency room (ER). But the ER doctors may not be familiar with your specific bleeding disorder. They might not know how it affects your body or what type of medicine you’re taking. Being prepared helps the ER team better understand your illness and how best to treat it.

Here are some tips for going to the ER and talking to ER staff about your bleeding disorder:

  • Always wear your medical alert jewelry or emblem.
  • Call your Hemophilia Treatment Center (HTC) before going the ER so they can alert the ER that you’re coming.
  • Insist that ER staff contact your HTC if they have questions about your treatment plan.
  • Bring important contact telephone numbers, particularly the HTC number, in case the ER staff has questions.
  • If possible, bring your treatment journal.
  • If possible, don’t go to the ER alone. Bring a family member or trusted adult with you.

For more information about ER visits, click on When to Go to an Emergency Room.