Have come across this press release from the NHS mentioning CF, are we PCD patients also to be included?
NHS At Home monitoring: Have come... - PCD Family Suppor...
Thanks Fiona, I went to see Prof O,Callahan at Leics last year, who finally clinically confirmed at age 84 PCD! I’ve been patient at QE University Hospital Birmingham for 60 years, finally last July got to see consultant who knew about PCD, Dr Sullivan. Had found her by going on line and paying to see qualifications and interests of all respiratory consultants, consultant I had been seeing was no real help. Dr Sullivan arranged Nebuliser, but couldn’t offer physio until March this year. I don’t go hospitals during winter flu season. Dr Sullivan runs Bronchietasis clinic, I didn’t know about. It was because of bronchitisasis that Kartagener was diagnosed at age 33. I’m hoping that by joining in research my experience will help others
Hi Fiona, yes will do when have time! As a widow living alone am kept busy with house, garden etc. Nebulising helps, but that and drainage afterwards takes up 3-4 hours a day! Think main thing is stay positive, don’t think can’t do something until tried, then look for alternative. I’m ok, will be glad when allowed out in my cars again, still have late husbands Classic Jag XJS, not worth much but lovely to drive, but not to supermarket carpark.