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Jewish hospital appt

MAC & Bronchiectasis | Last Active: Mar 5, 2023 | Replies (43)

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@irenea8

I also thought you might get tested for CF. The test is expensive and might not be covered but sounds like you should consider it. I had the test and mine came out negative. Has your pulmonologist considered putting you on Pulmozyme? It is helpful for those with CF that have very thick and difficult mucus. Some say it is not recommended for Non CF Bronchiectasis however. I asked my Pulmo about that and he said it was based on only one study and that they have found it helps some people with Non CF Bronchiectasis. It is very expensive and also may not get covered. I spend about one and a half hours on airway clearance a day and i think that is more than average. So 4 to 5 is a lot.

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Replies to "I also thought you might get tested for CF. The test is expensive and might not..."

Someone wrote a few months ago about wanting to cry each time they start the daily airway clearance. I can relate to that. This group has made me realize that the amount of time I am spending is excessive. The Respiratory Therapist told me to use nebulizer for 10 minutes and STOP!! I would have died from not being able to breath months ago, if i had followed her instructions! She also works in the Peds. clinic part of the time.
No! I have not been tested for CF gene, but I will contact the pulmo in UNC_CH and ask about that since she sees children with CF in the Peds. clinic.