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Cystic Fibrosis FAQ

Frequently Asked Questions

Click each question below for its answer:

Doesn't drinking milk increase mucus? Should a person with CF avoid milk?
No, drinking milk does not increase mucus. A person with CF can safely drink milk as part of their healthy diet.
If I have to go into the hospital, doesn't that mean I have failed at my therapies?
No. It is not uncommon for a CF patient to need hospitalization. It does mean that you need more advanced treatment than you can get or do at home.  
If I have to have a gastrostomy tube (G-tube) placed (a tube that goes from the skin to the stomach), does that mean I'm dying?
No, it doesn't. Many people with CF have trouble eating enough calories to maintain their weight or to eat enough to grow big and strong. Having a G-tube simply allows for tube feedings (often take place over night) to help supply more calories as needed.
I'm in a study, and I see the research coordinator and doctor all the time. Why do I have to come to clinic?
First, thank you for participating in CF research! Although it may seem like you do the same thing in study visits as you do in clinic, that's not the case. We ask you to come to clinic quarterly in order to assess your sputum, your blood sugar, and labs not commonly assessed in study visits. In addition, we follow the CF practice guidelines, which dictate quarterly clinic visits in order to facilitate social worker, dietary, and respiratory therapy visits as well as doctor visits.
I'm sick. What do I do? Do I need to be seen?

If you have the following signs and symptoms, or a combination of symptoms, please call 208-381-7092 (or 208-514-2525 after business hours) to make an appointment to be seen by a member of our team:

  •  Fevers of 100.4 or higher in the past 2 weeks
  •  Fatigue or being more tired than normal for more than 2 weeks
  •  Missing significant amounts of work or school during the past 2 weeks
  •  Poor appetite during the past 2 weeks
  •  Weight loss or poor weight gain compared to the last clinic visit 
  •  Increased cough frequency, duration, or intensity
  •  A major change in sputum: new onset, increased sputum, change in consistency, or change in chest congestion
  •  Increased shortness of breath at rest
  •  Increased work of breathing or respiratory rate
  •  Hemoptysis (coughing up blood) that is new or increased
Is a 504 Plan the same thing as a Health Plan, and which one should I ask for at my child’s school?
Health plans and 504 accommodation plans are different plans. Many people assume because CF is a medical condition that a health plan is what’s needed at the school level. Health plans contain information only relating to the health of the child and are not inclusive of other areas of needs that may require accommodations.

A 504 plan “ensures that the child with a disability has equal access to an education.” A child on a 504 plan may receive accommodations and modifications in any area of need related to the disability; to include medical, environmental, social/emotional, and academic needs.

Is it okay to put Vick’s Vaporub on a child’s feet and then put socks on? Many Internet sites recommend against this for CF kids because it is a cough suppressant.
Actually, putting Vick's Vaporub on a child's feet and then putting socks on has no effect on a child's cough. This is an urban legend. There may be some stories out there that claim it works, but there's no scientific evidence that it hurts or helps suppress cough.
Why can I eat a high-fat, high-calorie diet, but my brother can't?
People with CF have problems absorbing the nutrients in the food they eat. Therefore, we ask people with CF to eat higher calorie foods with more fat than the average American's diet recommendations
Learn more about cystic fibrosis care at St. Luke's