I don't have CFRD myself, so am not the best person to answer your question regarding that.
I was just wondering whether this is a regular doctor who has said this, or a specialist CF doctor?
I know doctor's can't always get it right, and even the specialist doctor's you have too pester before they will actually listen properly. But, still the best doctor too be treating you and giving you advice, is one that knows more about
CF as whole, even chest physician's can't crack it (as our new consultant is finding out the hard way.)
I used to go to a shared care clinic. Where every 2 months I was seen by a normal paediatrician, every 6 months the prof from our nearest CF center came down with a CF nurse, and then once a year I had an annual review at the proper CF center, where I saw a physiotherapist, dietician and had all proper tests done.
During the months where I was just seeing my paediatrition, everything was apparently coming back normal, and he kept just prescribing us cough syrup. But whenever the CF center came down, and took back a sputum sample with them, it was showing up infection.
I know now that this was because the local hospital, don't analize samples as closely or look for CF related bugs, like the hospital with a CF center do.
I now travel 2 hours, to be seen at the CF center, and things are looked at more closely, and never passed off as a cold. Trouble is, geniuses my CF doctors are, that is all they are good at. They aren't even too bright when it comes too Asthma.
My advice-definately look to see if there is a specialised doctor in your area. If you already have a specialist, ask why he thinks it's just a cold. Sometimes, if your lung function is good, and you do a lot of excercise you don't drop much when you get a chest infection, which means sometimes, the infection just gets passed off as a cold. This happens with me. When I do have an infection, my lung function and SPO2 levels stay the same. I just feel a lot more tired, not hungry, breathless and generally feel yucky.
Co-moderator in the: Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild liver cirrohsis, mild osteopenia. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ciprofloxacin, Ursodeoxycholic Acid, Saline neb/PEP system, Piriton, Mirtazapine, Diazepam, slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05