Can anyone from UK help me out with following question about acute exacerbations in IPF?.
I live in an area where there are no IPF specialists/support groups so was wondering if anyone with IPF has had an acute exacerbation and knows how it presented itself, or was detected, what types of test can be done to confirm it and if they were given any treatments. Particularly interested in hearing from folk who are under UK centres that specialise in IPF/ILD.
As background, I've had IPF for 3 years and my lung function has gradually declined over that time. Up till now this could not be detected on a weekly/monthly basis but was obvious over a 6 month to a year time scale. For example, I would find that I was out of breath climbing a hill that I used to have no problem climbing a year or 6 months ago. However, in last 6 weeks the declines can be detected on a weekly basis. For example, in 1 week I went from walking 6 miles without oxygen (SpO2 levels fell to 92) to requiring oxygen just to walk up the stairs or else my SpO2 levels fell to low 80s (previously no fall in SpO2 without oxygen). There was no obvious illness/respiratory infection at the time. Over last 2 weeks a second biggish decline has occured.
My main concern is that I could be having an acute exacerbation but I will not see my respiratory consultant (excellent, but not an IPF specialist) for at least a month so any information would be useful to have.