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Work with Your CF Team

It’s very important to have regular phone contact with your CF health care team during home care. You also need regular follow-up visits to your CF clinic. (Hopefully you make late morning or afternoon appointments so you can sleep in!) You’ll want to check your pulmonary function and weight to see if the treatments are working. Your CF health care team can help with problem solving tips and ideas.

Here are some other ways to work with your CF health care team and a home care agency to get extra support:

  • Ask your CF health care team about different types of IV access (heparin locks, peripherally inserted central line, implanted ports or central lines), oxygen systems (liquid or gas tanks or a concentrator) or tube feeding devices. Having choices that fit your lifestyle gives you some control over your quality of life.

  • Tell your CF health care team if you feel at all uncomfortable doing home care. Maybe you’d feel better visiting an outpatient infusion clinic for the first few doses. Your team may also be able to order a nurse visit to help you get started, be available for problem solving and to provide extra education.

  • Be compliant with labs draws! Getting your blood drawn for peaks and troughs (drug levels) of certain medications can make a difference in whether you save your hearing or kidneys. If you’re too tired or busy for labs, ask your CF health care team if they can order a visiting nurse to draw labs at home.

  • You may have choices in home health care agencies. Choose one that is close and offers the highest-quality service. Call your insurance provider to see what your choices are. If you prefer an agency that’s familiar with CF treatments and protocols, your CF nurse probably has some recommendations. If you have concerns about the care provided by your home care company, contact your CF health care team.

  • Ask your home care agency for the most portable and convenient IV pump possible. You can infuse with disposable bottles, portable pumps, push syringes or IV poles with pumps. Try to let them know clearly why you need one version over another to help you do your medicines as planned.

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    Did You Know...

    PubMed has more than 21 million medical and research articles, including information published about CF.

    It is free and a part of the National Institutes of Health (NIH).

     
    Ask your respiratory therapist for tips on using supplemental oxygen. Are there new and more comfortable cannula or masks? How do you flush your sinuses when using oxygen? How do you monitor your flow rate, and when do you need a flexible refill schedule? This is all good information to have.

  • Don’t always take “no” for an answer. If you find a pharmacy or home care agency that says, “No, that’s not our policy,” or “No, we don’t carry that,” always ask to speak to the supervisor. You can talk with your CF care team or look up information online and give that to your agency to challenge their rules and policies. Maybe you can give the agency an article about a new delivery device if you find it at an education event, on the internet at PubMed or through your CF care team or a friend. Who knows, maybe they’ll be convinced to order that device!

  • Don’t do home IVs just to save money. If money is your concern, talk to your social worker to see if there are other options for hospital coverage.

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Updated 8/7/13

The Cystic Fibrosis Foundation is an accredited charity of the Better Business Bureau.