Help with O2 levels please

[SuzyKB]

How concerned should I be? My O2 level is usually 92/93 at rest. As soon as I start to walk, it drops to 87/88. If I walk on a slope/upstairs, it can drop as low as 74. I recover within about a minute.

It's been suggested that using vpap should improve this, as I have atelectasis as well as reduced total lung capacity due to severe kyphoscoliosis. I've been on vpap since 1st June and I've been 100% compliant - over 500 hours' use. Should I 've insisting on ambulatory O2? Whilst I would rather not have the hassle of using it, I'm concerned to avoid organ damage. I'm losing height due to the collapse of my lumbar spine. I'm 10 inches shorter than I should be so I think my organs are suffering enough without the addition of oxygen deprivation. I have a good team of doctors and I'm seeing them on 29th August. How should I deal with this problem?

[Caspiana]

Hello SuzyKB .

Like you I recover quickly when I stop to rest, however, my pulmonologist would take no chances as the risk of organ damage is too great when our levels drop that low. I know it's a hassle with the tanks and cannula but in all honesty I feel less exhausted and just better in myself with oxygen. And in time you get used to the tubes and tank. I would suggest getting accessed for ambulatory oxygen.

Wishing you the best.

Cas xx 🌹

[SuzyKB in reply to Caspiana]

Thank you, Cas! I will follow this up.

[Linda8p]

Hi I have a vpap with piped oxygen attached. Had it 6 months. I have to say it's been great for me. I have a new lease of life. I can walk further than could a year ago. My stats used to drop like yours and I was on oxygen 16 hours a day. Now with the vpap and the oxygen attached it's great to actually get an extra hours sleep something I couldn't do before as I couldn't breathe even with overnight oxygen. I truly believe the vpap with oxygen connected has given me a few years back. Even my attitude to life has changed. I feel like I am 30 again. 😘Lol. Wishing you the best for your Dr's visit.

[SuzyKB in reply to Linda8p]

The vpap is good for me too (I don't have oxygen with it). My sleep is much less disturbed, longer and more refreshing. I went to the GP about poor sleep 6 years ago and was told it was my age. I had also been mistakenly treated for asthma for 25 years. I understand that it is hard for doctors to work out each person's health issues when there are so many possibilities. I'm so grateful that this has now nearly been resolved! I just have a bit further to go to keep myself in the best possible health.

Thank you for your reply.

[O2Trees]

Im not familiar with the conditions you have and not sure whether/how they might affect thinking about oxygen requirements but I agree with Caspiana - I would be wanting to discuss a 6 minute walk test to assess for ambulatory oxygen.

[SuzyKB in reply to O2Trees]

Having a deformed rib cage means I can't breathe in fully. I've coped well with this for many years, as I play the clarinet professionally. I have a total lung capacity of 55%. Now that I'm older, this is catching up with me.

[Hidden]

Continue doing what you are doing ie. noting & recording your sats during a variety of daily activities - write/type them out on a sheet of paper to hand over at your appointment. Also - if there is any hesitation on their part to prescribe O2, ask for overnight sats monitoring too. I don't think they should hesitate to prescribe O2 - I know others with severe scoliosis etc have been prescribed it - although as you probably already realise it can be a hassle to use! Good luck with your appointment

[SuzyKB in reply to Hidden]

That's very good advice. I'll be more thorough and make some notes.

I had overnight sats testing but they had limited data. I only slept for a few hours because a noisy patient on the ward kept me awake.

I was expecting to have a 6 minute walk test on 2 occasions but it never happened. I don't understand why, when I spent 3 days in hospital for testing.

I was told by one of the doctors not to buy an oximeter and later I was told by the physio to buy one!

Overall I've been given excellent care. I feel confused about it all. Hopefully I can at least ask about these issues and the low O2 at my appointment. The fact that I'm getting similar answers here gives me confidence to ask more questions.

[joyce74]

I went to a walk in centre when I was struggling with my breathing and was advised to go to A and E which I did, was put on oxygen and admitted for a week. My sats had been 82. Was tested and home oxygen delivered before I got home. It has been a great help. I felt as if I was on holiday during that first week . It gave me a lot more freedom. Joyce

[PollyP]

Hi, certainly think you would benefit from having an oxygen level assessment.

Your 02 levels are the same as mine resting and active. I have been on ambulatory oxygen fir about 10 days and it has changed my life!

Not sure of your procedure for getting an assessment in the US, I presume that is where you are? But I would go ahead to get an assessment and let us know how you get on.

Breathe easy..,

[SuzyKB in reply to PollyP]

Thank you for your help. I'm in the UK. I'll have a very frank conversation with the consultant on 2 9th August. It's good that I don't have to wait long.

[Hidden]

wow my satats are 91 at rest and about 86 to 82 when walking and can drop too about 76 when going up hill i have had the 10min walk test and going next week to a other 10 min test with oxygen to see if it will help i do hope it does and i love to go and walk round the shop with wife

[SuzyKB in reply to Hidden]

Good luck with your walk test. I hope the oxygen will help.