Hi all,
I’ve now had four private hour long sessions of professional physio, made big difference, not now gasping for breath, no weazies or rattles. Despite asking and waiting weeks NHS wouldn’t do it. Cost £60 each. Had mucus throughout lungs at start, despite my drainage efforts, now big improvement. Would recommend for anyone struggling to be breath. Does anyone else in UK have to pay for this.
Hiya ... glad to hear that is working but sorry you had to pay for it. You should be able to see a physio through your PCD Centre in the future (they are just being set up for adults at the moment in Leeds, Leicester, London (Brompton) and Southampton). Are you seen at any of these hospitals at the moment? If not, keep an eye on our website pcdsupport.org.uk for details about the new service.
Hi Fiona, thanks for reply. Ive been patient for over 60 years at Queen Elizabeth Birmingham, one of leading uk hospitals. Didn’t think was seeing right consultant so paid last spring to look on line at all, and found Dr Anita Sullivan, whose been helpful and go to her bronchiectasis clinic, that I didn’t know about until July last year. She sent me to see Prof O’Callaghan at Leics childrens dept, who did simple nasal test, and I smiled when at age 84 was finally confirmed I have PCD. Go back in spring for another test. Asked about Leics adult service last January and again this year, still not operative. Looked at 2018 NHS rules re PCD treatment, suggest I’m entitled to respiratory physio, but it’s post code lottery.
Sorry it took so long for you to be diagnosed ... perhaps we should write a story about you for our website ... you are probably our oldest PCDer in the UK!
Unfortunately it has been a postcode lottery for PCD patients but the new service should help with that ... it should be up and running in the next few months.
Best wishes to you!
Hi Fiona, was told I had Kartagener when 33, based on heart on wrong side etc, had every conceivable test. Various experimental treatments have been done, none successful, consultants always said then knew not to do on children, hope they remembered this! I have strong genes, mother lived to 111, and try to stay positive.
One problem I’ve had since war is flattened nose, damaged by falling debris in air raid shelter during big bombing raid. Have always been refused consideration for reconstructive surgery, so breathing extremely difficult. Thanks for your help, best wishes.
Definitely think you should write us a story! Would love to hear about your flattened nose story!!!
Hi Fiona, lived in Birmingham during war, had mumps when should have been evacuated. Because of nightly bombing raids, went to bed every night in cold damp wet air raid shelter. One night lot of bombs including land mine fell in vacinity, shook shelter, think shelf for candle etc crashed onto me, remember it was very dark, and had to scramble out. Two days later when nose had stopped bleeding, doctor pushed with his thumbs nose back towards middle, but didn’t try to lift it up! Had lots of colds, bronchitis and pneumonia with kaolin poultices, but survived! Never give up. When saw War Horse sounds reminded me of war!
Morrion10 I had only five session of chest physio therapy in my life time in Canada. I tried to absorb as much information about chest physio as I could to stay healthy. I can learn techniques on my own and came up with extra technique and useful devices which work for me. Yes chest physio and the aerobika device combined work for me along with daily nasal rinses and now more medication to keep my sinus even more healthy. Keep up the work and good luck...
Anyone experience with ear tubes / grommets? 
C-section & coughing
Has anyone had a lung transplant?
