Hi all - this is my first post here (or anywhere!!! - new to this!!) I look after my wife who has Pulmonary Fibrosis diagnosed about 3 years ago after having been ill for quite a while. Doctors thought for a long time that her problems with breathlessnesss were due to heart issues and being overweight, although she was never what you might call obese!!
After deterioration of her health and pneumonia earlier this year she has now reached the end of available treatments, and because of her age and other health issues she is not "suitable" for a lung transplant. Currently she is on oxygen therapy at home, 15 lpm for 24 hours. The issue I have with her care at the moment and what I would like to ask opinions on is that the oxygen masks supplied by the company contracted by the NHS to provide home oxygen in Scotland are uncomfortable for use for 24 hours. The edges cut into her face and the masks are just a bad fit - for instance too long for her face.
I have talked to her Specialists, to Respiratory Nurses, and to GPs none of whom have any solution to offer. I get the impression from some that because there are so few people on home oxygen at 15 lpm for 24 hours that it is not "cost effective" to spend time on such a small issue.
Thanks for letting me rant on for so long - and if anyone can help with suggestions I would be very grateful