What to Expect
Clinic appointments are every Wednesday afternoon, once every 3-4 months or more often if needed.
You will be asked to complete a questionnaire that will give us a general overview of how your health has been since the last clinic visit. If you prefer to do this prior to your clinic appointment please print off a copy of the questionnaire and bring it with you that day.
We will collect a sputum sample or throat swab from you each time, to evaluate what organism may be growing in your lungs and to determine the best treatment for you.
What tests will I have?
Starting at the age of five years, you will complete a Pulmonary Function Test that allows us to monitor your lung function the health of your lungs.
You will see the doctor and nurse case manager at every visit. We will review your care and answer any questions you may have. The physician will complete a physical assessment and listen to your lungs.
Once a year from the time of diagnosis, you will be asked to complete yearly blood work and a chest X-ray. This is to monitor your vitamin levels, ensure you are not developing liver disease and are able to fight off infection. The chest X-ray is done so that we can monitor for the chronic changes that occur in CF.
Starting at the age of 10 years, you will also have an Oral Glucose Tolerance Test, which monitors for Cystic Fibrosis Related Diabetes. You will also have a Bone Mineral Density done. This test shows us how strong your bones are and whether or not we need to add any more vitamin D or calcium into your diet.
Clinics for infants
If your baby has been diagnosed with CF, the clinic flow is slightly different. You will be seen weekly for the first 2-3 months and as your baby progresses, we will slowly increase the amount of time between clinic visits. Each baby responds to treatment differently and as such we will individualize the care plan.
The Ontario Newborn Screening Program
The Ontario Newborn Screening Program (ONSP) screens newborns for a wide range of medical conditions including cystic fibrosis.
Frequently Asked Questions
Q: My baby’s newborn screening has come back showing a possibility that she may have CF, what happens next?
A: The newborn screening results will come back and show if there is an elevated IRT and how many disease mutations were identified on your baby. Within one to two weeks of getting the results you will be booked in for a sweat test to be performed which is the ‘gold standard’ test to determine whether or not your baby has CF. The sweat test will happen in the morning in the Paediatric Medical Day Unit (PMDU). The results take approx 2 hours to return. Once the results return, you will meet with the genetic counsellor and a paediatric respirologist to review what they mean.
Q: The sweat test was negative, now what?
A: Should the genetics show one mutation, there is a good chance that your child will be a carrier of CF. The genetics counsellor will discuss what this means as your child may need to know this for later in life when having their own children.
Q: The sweat test was positive, now what?
A: The CF nurse case manager will also meet with you and provide you with information on CF to take home and read. You will be booked in to the CF clinic the following Wednesday to begin learning about the disease and its management. You will come once a week for six weeks. If everything is going well, we will slowly increase the amount of time between clinic visits until you are spread out to every 3 months.