This is almost a copy of my Face Book status. I've kept it simple without too much technical stuff.
>> I'm getting better by degrees as my Gran used to say. Find the home oxygen very cumbersome to lug the cylinder around. It's like a diver's air cylinder, only weighs about 6 kg but it's awkward. The bag which you carry it in goes on like a back pack. I don't need the O2 at rest. However, going out and about will require effort and the tank lasts 2 hours so some planning is needed too. I could do short expeditions off the cuff though.
ANYWAY, they are changing it to an easier system next week - A liquid O2 tank I fill flasks from. I'm surprised that the flow has to increase (I had another assessment yesterday as I had used a lot just getting used to the whole business).
Reg has stepped up to the breach and is doing some dinners and more fetching and carrying and all that, he isn't well himself and looks tired which is worrying, he saw his GP, got meds and they will do tests. Can't have him flake out on me now!
Soon be all systems go for finding a better place to live (rented). I'm at the form filling stage yet but am reasonably confident of getting somewhere given the medical needs.
Central Bexhill would be good, being flat. Has to be ground floor with parking.
I'm mostly in a good mood, but some days get low about the restrictions I have to accept. Still breathing though!
*Bailey the gerbil has got the all clear from the vet and is back home with Motte now.*
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robevanz
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Great to hear from you again Rob You will undoubtedly find liquid 02 a great improvement on what you have at the moment. Apart from being less cumbersome there is the advantage of being able to fill up as and when you need to, and you will be able to spend a much more time out and about! You say your flow had to be increased - what LPM are you now? Bexhill sounds a good move - would love to live somewhere flat myself, but Cornwall seems to be nothing but hills.
May both you and Bailey continue to go from strength to strength, best wishes, Parvati.
Thanks Parvati and Stitch! Thought I'd do a joint reply.... I'll be on 4LPM ambulatory which is actually more than I'd been using, I was keeping it down at 3 max, but the new walk test indicated 4 would be better. Blood gas from the ear was 'borderline' this time, not as good as at the last test (pre pneumonia). I seem OK at 85% saturation at rest.
The resp nurse was great, Reg and I were there an hour and I had my questions better formed this time. She sent me away with an oximeter to wear while sleeping which records the o2 sat as I told her I wake at 74% often.
Stitch, she did put a conserver on for the start of the walk test but it 'wasn't man enough' to deliver the o2 to me so that's been discounted as a possibility in my case. You know, I think they could produce more user friendly containers, I've found the dials and knobs infuriating too and a 5 can look very like a 0 without specs on. And WHY can't they design them with a lower centre of gravity for stability's sake? Glad it looks like the flasks are better in pictures I've seen.
Still, mustn't grumble.
Hi Rob, glad you are feeling you can manage things better now. And hopefully things will improve even more when you get the easier system next week.
If you are finding each time your ABG when measured by an NHS medical professional is ok, you might want to check with the doc or nurse about the discrepancy readings you are getting at home. What are normal blood oxygen levels etc
All good wishes in finding a suitable new home for you all.
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You will undoubtedly find liquid 02 a great improvement on what you have at the moment. Apart from being less cumbersome there is the advantage of being able to fill up as and when you need to, and you will be able to spend a much more time out and about! You say your flow had to be increased - what LPM are you now? Bexhill sounds a good move - would love to live somewhere flat myself, but Cornwall seems to be nothing but hills. 
Home oxygen advice needed!
Oxygen and100 yard challenge
Oxygen concentrator twisty tubing !
low oxygen levels
