Thursday 2nd May - My Oxygenated Life

I'm going to have to open a whole new file to keep track of everything... perhaps these blog posts will help. 

I did some googling today. Apparently there are around 32,000 people in the UK with Pulmonary Fibrosis (PF), around 8,000 people with Pulmonary Arterial Hypertension (PAH) and 19,000 with Scleroderma, the auto-immune condition I was first diagnosed with back in about 2000, which led to the PF and the PAH. I hadn't really realised how uncommon my situation is - when I go to the clinics they are always packed with people so I had assumed I was one of a large crowd. 

That explains why, outside the specialist clinics I attend in London, none of the other health departments I interact with have much idea of these diseases. I'm working on getting an assessment for home oxygen done locally. The secretary told me that I am seventh in the queue, so, with two clinics a week I should been seen at the beginning of July, possibly at the end of June. 

Months away. Oh. My. Word. It's a good job my life doesn't depend on this (heavy irony and sarcasm). I've said I'll accept a short notice cancellation in the hope getting an earlier appointment. Meanwhile I'll carry on juggling the portable concentrators, each with a short 1.5m  length of tube, that we bought some time ago. Otherwise I would just have to stay upstairs using the NHS concentrator prescribed for overnight use. 

I had a call from another community health department about things that would make life easier. I'm so glad we were able to afford a stair lift ourselves. The waiting list for assessment for NHS help is 6 months... I really, really feel sorry for people who just have to wait. 

Thank heavens, praise the Lord that Spring is on the way! Getting out into the garden every day for a little while is keeping me sane and sweet tempered(ish!).