people using/on oxygen need some input

[Mr CFX]

Need some input from people who are using oxygen.

I have been on o2 for a little while now but never been told or had it tested out properly to see what i should really be on.


Currently i am on 4litres of o2 and my sats are around 86-94 when IDLE

When i move around or walk upstairs etc they drop to around 80 sometimes a little lower and my heart rate increases

I also now have a slight swelling on my ankles which means i need more o2 as i must be low

Now i have been told you are supposed to keep your sats above 90. This would require more oxygen when idle and lots more when moving

But turning it up could cause co2 retention etc so what do i do


In the hospital sleep study i was fine on 4l and sats are actually higher when sleeping at around 90-94 without really dropping


But its the day and doing things that's the issue

I am going to get a study booked in but until then can anyone shed light on this as to what you use and if you are on different litres for idle and moving. As that's in a few weeks time and i need to sort this asap


Also has anyone ever managed to decrease the oxygen they need and slowly get better to need less o2 as im starting a whole new exercise regime to try and beat this and want to make sure my o2 usage is perfect so i can maximise my workouts and not pass out haha

 

[windex125]

I have been using o2 for abt 6yrs now but only at night 3 liters, sad to say I do not know my sats? but when I lost the function of my right lung it has been colasped for yrs. now due to MAC and other issues, I have to stay when I walk long distance or up steps I am completely out of breath, I wish I cld be of more help info wise. Pat-59/CF and a lot of other issues

 

[nocode]

Hi,

My saturation is between 90 - 94% when idle. I feel fine on low activity level without supplemental O2. My sleep study showed an average of 86% saturation, the lowest point reached being 80%. I am on 2 Lt at night, continuous flow.
I also use 2 Lt when exercising.

My doctor and physiotherapist both tell me that as long as you don't reach 98% saturation on supplemental oxygen it's OK. I think this is because our cells are not used to a high O2 concentration.

 

[Mr CFX]

Thanks for the input

I have a sleep study in january but its coping until then that's the issue

I am on 4L but i had turned it up to 5 to keep sats up but after talking to the docs they said not to as i do retain some co2 from the last test they did (maybe i retain more now ill soon find out)

Ive been researching and ive seen the bipap helps with carbon retention and helps people get the right o2 for sats but also keeps the carbon down

this sounds pretty good to me until i read some people saying its the last stage for us cfers which has scared me to be honest

I mean on paper it looks like i am at the last stage but in reality ive seen people with far better lung functions and weights who are worse than me so im confident i may be able to do something miraculous and turn this around or slowly make it better at least


The main thing at the moment is my sats when moving as they drop to 70 quickly so once i find out what i can do about those i can restart my exercising etc and can leave the house again too