Saturday, 2 February 2013


Terrible day - Thursday. Hospital visit to Kings armed with an overnight oximeter. First, reprimanded by bossy chest consultant for being late for an appointment I didn't know I had, then given the bombshell that my CO2 had gone from 5% to 8% and I was at risk of imminent ventilatory failure! Talk about lack of bedside manner. No compassion at all.  To say I was terrified is an understatement.

She said I had to be admitted there and then to be trained on the NIV machine. If I didn’t comply I had only weeks, maybe months left. No punches pulled.
 I was too scared even to cry! I told her that I didn’t want to stay in but agreed to try the machine. (It’s ridiculous that the one in the clinic which is used to demonstrate NIV is very antiquated and disconcerting).

In the chest unit I was greeted by a lovely physio and a respiratory technician. They talked me through the machine (modern and easy to use) and the different masks; I immediately opted for the nasal mask which didn’t appear to be as claustrophobic as the others. I tried it on and, with what any ‘normal’ person may consider as being patronising manner (but don’t forget, I’m s**t scared of the whole experience) they went through the machine and measurements, staring low. Starting it up and monitoring my response and reactions. It was relaxed and caring; I forgot my fear and, despite the initial ‘weirdness’ of air being ‘forced’ up my nose and having to breathe only through my nose, I sat back and let it happen. Surprisingly, it was okay. Just keep remembering that this is your temporary lifeline and you’ll cope.

Within half an hour my CO2 had gone down to 6%, a vast improvement. Exceptionally good but bossy doctor came back and said I could go home. So, here  I am, 2 days later; SATS up to 99% O2 which is much better than the 91/2% which it was on Thursday.

(thanks Steve for information re oximeter. I bought one and it’s invaluable – (

The ventilator seems to be working and I have to admit that I felt less anxious this morning, THOUGH I DO REALISE THAT THIS IS THE SLIPPERY SLOPE AND ................IT IS TERRIFYING!

Now that I am at this point in my disease process I can only hope that the NIV can temporarily ‘hold’ things. I have a wedding to attend (my younger daughter, Alex), and a grandson to cherish. So, sorry ‘grim reaper’, but I’m busy at the moment!

My beautiful daughter, Alex and her adorable nephew (my grandson), Flynn