Questions and Answers for Cystic Fibrosis Patients and Families

Cystic Fibrosis Center

Questions and Answers for Cystic Fibrosis Patients and Families

COVID-19 Information
For more information about COVID-19 and UW Health's response, please visit:
coronavirus.uwhealth.org

We realize that everyone has concerns about the coronavirus pandemic. The questions and answers below may help to address some of your concerns. Throughout this pandemic, the situation evolves and changes regularly. Please go to coronavirus.uwhealth.org for the most up-to-date information.

Video icon - answers to common questions about COVID-19 Watch a video of Dr. Rock answering common questions about COVID-19

I am concerned about coming back to clinic and the risk of acquiring coronavirus. What is being done to minimize the risk of infection?

  • All patients and their caregivers (limit of two adults at American Family Children’s Hospital) are expected to wear a mask/face covering upon entering the American Family Children’s Hospital and keep it on all the time while in the building.
  • Staff are required to self-monitor for symptoms twice daily, and screening occurs for all patients and their families, with a temperature check upon entering the building.
  • Siblings who do not have appointments are not allowed to come to clinic.
  • There are enhanced cleaning procedures for our exam rooms.
  • In addition to the usual gowns, gloves and masks worn by providers, all staff who enter exam rooms will be wearing face shields.

In the past, the waiting room has always had many people (parents and children) present. What is changing in the pediatric specialty clinic?

  • The clinic is opening in phases and we are currently in phase 2.
  • Our clinics are less crowded as some visits are now conducted via video or telephone.
  • Our experience so far in phase 2 is that the number of in-person visits is approximately half of what we were seeing in the pediatric specialty clinic prior to the pandemic. Thus, there is little to no time spent in the waiting room.

We recently participated in a video clinic visit. That was very convenient and efficient. Can all our clinic visits be video visits in the future? Will we continue with quarterly CF clinic visits in the future?

  • Medical centers and CF Centers have rapidly transitioned to video visits due to the coronavirus pandemic. These visits are efficient both for staff and for families.
  • Unfortunately, the video visits do not allow us to obtain high quality heights and weights, throat swab or sputum cultures, nor chest x-rays. There is a need to obtain these tests so that we can maintain the best health possible for people with CF. There may be an option to obtain blood work and x-rays at your local clinic/primary care provider (PCP) office.
  • We hope to offer a combination of in-person and video visits in the future.
  • The coronavirus pandemic has taught us that there are other ways to provide high quality care to people with CF. There is not a “one-size-fits-all” approach. For children over 2 years of age, if the patient is doing well, it is likely that there will be a hybrid approach to clinic visits in the future. Specifically, some in-person visits (so that necessary cultures can be obtained) and some video visits. For patients who are not meeting their nutritional or pulmonary goals, in-person visits will be necessary (including the need to see patients more often than every 3 months).

Why can’t I go to my PCP for a throat swab culture?

  • When labs see a throat swab, they expect that the desired test is a screen for strep.
  • In CF, we are interested in specific bacteria such as Staph, Pseudomonas aeruginosa and Burkholderia complex.
  • The bacteria named above can only be grown on special media (think of this as nutrient Jell-O) in the lab.
  • In our CF Center, throat swab cultures are labeled as coming from a CF patient and the lab uses the proper media to grow the bacteria.

Why is there an emphasis of in-person clinic visits for children under 2 years of age?

  • The fastest growth in our lives is in the first 2 years.
  • A normal newborn doubles their birth weight by 6 months of age and triples their birth weight by one year of age.
  • It can be very difficult to obtain accurate lengths and weights from home measurements.
  • We need to make sure that this growth continues normally in infants with CF. In-person visits during this crucial time in life allows us to “fine-tune” enzyme dosing and provide helpful guidance so that infants have the best pulmonary and growth outcomes.

Is there a way to monitor pulmonary function values without coming to clinic?

  • The Cystic Fibrosis Foundation has identified a home spirometer called the MIR Spirobank Smart that we hope will be useful for monitoring spirometry values at home. This device connects by Bluetooth to your smart phone.
  • The values provided by this device are the same ones that we look at in clinic (FVC, FEV1, peak flow and FEF25-75).
  • We are in the process of obtaining these home spirometers and will teach you how to use the spirometer.
  • We do not recommend that patients blow into their spirometer every day. The best use of this device is to perform spirometry at home just prior to a video clinic visit.
  • This device can also be used at home if the person with CF is ill with an increased cough.

How are the results of the home spirometry values conveyed to the care providers at the clinic?

  • There are two ways that you can provide the home spirometry values to us:

1) You can call us at (608) 263-6420, option #2, and verbally tell us the spirometry values.

2) You can save the spirometry test as a screen shot on your smart phone, send us a MyChart message and attach the screen shot to the message. This is the preferred way to convey the results to us.

For those who have not signed up for MyChart, we highly recommend that you establish a MyChart account. You can sign up for MyChart by following the directions at: uwhealth.org/mychart.

We will provide step by step instructions of how to send the results to us via MyChart. Grasieli Reis from respiratory therapy (or another respiratory therapist) will be available as a resource to you if you need assistance.

How do I keep up with COVID-19 information?

This pandemic is very scary. How can I cope with this?

  • The information about COVID-19 changes quickly and we work hard to keep you up to date, let you know what to expect and keep you and your family safe while managing cystic fibrosis.
  • Please know that we are here for you and always available to answer questions. You can contact us at (608) 263-6420, option #2, or send a MyChart message to us.