Hi Andy, that was me.
......... Now I’m going to go on a bit. Skip to final paragraph if you’re in a hurry!
I was prescribed oxygen nearly 6 years ago after a stay in hospital preceded by a dramatic entrance into icu. My asthma was suddenly COPD! Bit of a shock all round. Anyway I was initially on 2lpm for at least 15 hours a day. They sent me home still breathless and very weak, but improving slowly we thought.
After some months I started getting weaker and more tired again. I voluntarily gave up driving because my legs felt so jelly like sometimes. We bought a wheelchair – we’d already installed a stairlift. My consultant in Dorchester started talking about the BiPap – I had no idea what it was. But off we went to Southampton respiratory department where they perform miracles it seems. I think it was then we heard more about CO2 retention. My CO2 levels were very high indeed, so they gave me the BiPap with face mask, set the levels, told me to increase the oxygen to 4lpm overnight and said come back next week. The face mask was uncomfortable but I’ll try anything that might help. We went back to Southampton a week later, by which time I was already feeling stronger, and my CO2 levels had dropped significantly, which explained the improvement.
Things have continued to get better and 6 years on my kids and husband have just about forgotten the trauma of being summoned to my Intensive Care bedside. I started driving again within a couple of months because I felt so much stronger. I still see my consultant every 6 months, and go back to Southampton yearly. Over the time they dropped my oxygen down till it was only 1lpm day and night, and now I don’t have oxygen at all overnight. Having tried a few different types, I’ve got used to the face mask you have to wear. Any discomfort is more than worth it, and I sleep well.
Ok that’s the story - thought I’d give a bit of my background to make it clear that there was never any question of not giving me oxygen. I needed it because my sats were too low, and I certainly didn’t have to fight for it. I carry a CO2 Retainer medic alert type card now, explaining how much oxygen it’s safe to give me in an emergency. Maybe I’ve been lucky with my consultant. I hope you have luck with yours. You might not need oxygen - that depends on your sats - but if you are a retainer the BiPap could work wonders as it did for me.
All the very best, Jan