"Idiopathic Pulmonary Fibrosis sufferers deserve..."

Anything else?

I was diagnosed with IDF nearly 3 years ago in Derby shortly before I moved to Rugby.The consultant was kindly but straightforward with his message. 'There is no therapy and no medication we can offer you. Your life expectancy is 3 to 5 years during which time you will increasingly need oxygen therapy .All you can do is to stay as fit and active as you can and avoid catching colds or flu'. With that I was ushered out of the surgery. My first reaction was to wish it had been lung cancer as at least I would then have had the support of a specialist cancer nurse with whom to talk things over, and some possible avenues of treatment. Surely there should be some counselling followup for a patient given such a bleak prognosis. Having moved to Rugby I have had excellent care from the Respiratory Physiology Dept who are very kind and have made a real difference to me. However I feel very upset that I have never seen the consultant and every appointment has been with a locum, a different person every time. It would give so much more confidence if one felt that the doctor had any real knowledge of my history, and was going to be an ongoing monitor of my progress. Presumably someone somewhere is trying to find an answer to this condition but too late for me I fear. Please give us sufferers as much care and support as others with a terminal diagnosis are given.