URGENT high level lpm oxygen users and bipap users PLEASE read and comment

[Mr CFX]

Need some urgent help here before its too late. Please read it all and comment if you have any help.


I have been on 4lpm oxygen from a concentrator for when sitting/idle + very light movement like standing or going to toilet, light walk/steps etc now and this usually keeps my o2 from around 85-90 when idle and mid 70s when moving.

My sats drop really fast as above so i was told to switch to an o2 cylinder on 6lpm recovery for when moving more and even though they still could drop into mid 70s they would come back up to 90+ in no time. Basically it was used as a quick recovery from a cylinder when you sit down etc instead of the usual 4lpm flow from the concentrator to bring sats up super quick as the longer they stay in the low range the worse the internal damage is.



Now I've been getting by like this but major problem


Recently my sats have dropped a little more overall (could be the humid weather recently)

The problem is that 4 lpm is no longer enough and keeps my sats at 78-82 SITTING/IDLE and i feel bad especially when sleeping as i cant sleep as its too low so doesnt feel great

If i turn it up more ill get co2 retention and get headaches and my sats will come down again as a result

And when light moving I've seen it drop to as low as 63 on 4lpm whereas before it was mid 70s


And even when plugged into the cyclinder at 6lpm i am lower than what i was and sats don't raise to the same figure they used too so i could do with more when moving

Now low o2 levels result in organ damage, a heart attack and potentially death anything under 88 really but especially as low as im getting and at the same time too much co2 can kill you for taking in higher oxygen


What the hell do i do?


I've been told by so many people now the bipap helps prolong life and has worked literally miracles as apparently it expels co2 etc in the night. Does anyone use one or have any input or feedback on it


And lastly i only have a nasal cannula which apparently can only take max 6 so what would i need to have on the concentrator if they somehow can swap to one that goes higher than 5?



So confused because i want to start exercise as that should supposedly help sats but at the same time the fear of killing myself and the sheer fact that i am confused on how to exercise with sats like these is really detrimental.

 

[musclemania70]

the bipap is supposed to help a lot. my problem was that i couldn't keep it on. everytime i finally adjusted it to fit snugly i needed to cough and had to take it off and start all over again. it really is difficult to use for people who have to cough constantly.
but its supposed to be very helpful. sorry i wasn't much help but if you can use it, do it.
i also felt like it was suffocating me.

 

[Mr CFX]

Thanks for your input

I take little coughs sometimes in the night and some big coughs.

I rarely need to cough anything out at the most once a night if that.


I have never actually seen a bi pap so what does it feel like or do exactly so i can understand what people mean when they have negatives like you have.

 

[catcom]

Hello,
I recently started using a bipap at night and think it really helps. At first it did feel a bit suffocating and I needed a sleep aid to help me adjust but now I love it. I can really tell that I am more rested with it and it has helped keep my CO2 levels in check. Mine is a small (size of a clock radio) that sits on the nightstand and a hose from my concentrator hooks into it. I started with a full face mask that covers nose and mouth but now just have a nose mask. They also have "nose pillows", (think of a canula on steroids) but I haven't figured that out yet. My only problem is that it makes me really thirsty and I have to get up occasionally and take a drink, (easier with the nose only mask). I recently turned the humidity setting up a bit and that seems to help with the dry mouth. I've heard that some places have you go through a whole sleep study to get the levels for the bipap correct but I started it in the hospital and we just adjusted it as needed.

I don't have much advice regarding the low O2 during the day. Usually when I get too low for my home equipment to handle I have to check into the hospital for a couple of weeks. I can usually tell that I need to go into the hospital when can no longer complete a breathing treatment without my sats getting into the danger zone even when I am on the full force of my home concentrator. The nice thing about the hospital is they can run my breathing treatments off the oxygen so I can actually get some clearance done. It has been happening a lot more lately (5 times last year!) but I usually come home only needing O2 for sleep and exercise and I am grateful for that. I hope you are able to get some R&R and get back to a safer level soon.

 

[Mr CFX]

Great reply thank you very much and absolutely i will be getting thr overnight sleep study done too

Seems like it should help loads! I hope i get used to it and isn't too strange

 

[skyler]

So I am not someone who usually speaks up but in this case I feel like I should. First, my son had a BiPAP machine for quite some time and it definitely did help him.

i'm going to mention two other things that you can look into. I do know quite a bit about them, but I don't want to come across like I'm giving you advice but rather just information that you can follow up on if you so choose.

The first thing you could look into is, hyperbaric chambers. In a nutshell these are like the big daddy's of a BiPAP machine. A BiPAP machine has limitations on how much pressure it can provide before it starts giving you the feeling of blowing you up like a balloon. You climb inside of a hyperbaric chamber so the pressure is equal on the outside and inside your lungs. This allows for greater pressure while remaining safe. The list of advantages are awesome but they are large and take up a lot of space and quite a bit more expensive than a simple BiPAP machine. Anyway, you might find it interesting to look into.

The second thing you may want to look into is, Heliox. Heliox is a oxygen and helium combination as a breathing treatment. Sounds kind of funny but the smaller helium Adam helps carry the oxygen through the membranes of not just your lungs but throughout your body easier. Again, I have personally seen this including with my son. When he was on extremely high oxygen levels we did this and we were able to turn the percentage of oxygen way down while his stats still went up. Higher oxygen concentration and your body without the danger of oxygen toxicity. It also helps the carbon dioxide get out of your body which is equally important but does not get talked about a lot. Anyway, ask around and look into it if you want. You may find it to be a solution for you.

good luck with whatever you do. If I were to give you any strong advice I would just say that don't just count on anyone else, you have to be diligent about your own care.

I hope you feel better soon.