Oxygen and CPAP Connection Questions

[palerider]

I replied to you, palerider, but my reply seems to have vanished. Major bummer if I have to use distilled water, as I use 2 A10 humidifier tanks per night of sleep as it is. Can you send me a link to the manual to which you refer? How long have you used oxygen, and how much has it helped? Thanks for your input.

https://www.invacare.com/doc_files/1143482.pdf

Bottled or boiled water.

I don't use O2, but my brother does while sleeping.

[colomom]

Wow, your frustration is understandable. It sounds like whatever is going on justified a 5 day stay in the hospital yet they booted you out without figuring out or addressing the underlying issue(s). Both my father and son have serious complex medical issues, I can relate to your frustrations. ER's and hospitals are designed to stabilize patients then move them out the door. On top of that the docs are busy and allowed very little time with patients they will never see again and we are in the middle of a pandemic. If I were you I would take the advise of the majority of docs who felt you need supplemental O2 and would keep pushing the docs to take a deeper look and hopefully figure out whats going on. Don't give up hope, it has been my experience that follow up specialist appointments are often much more helpful than rushed hospital consults, hopefully your appt with the new doc will be fruitful. As Pugsy suggested, a recording oximeter might be a good investment. Another pretty inexpensive thing you could get to use at home to try to help figure out what's going on with the daytime O2 sats is a peak flow meter (you can pick one up off Amazon for around $20).

[MarylandCPAPer2]

I once again "passed" the six-minute walk test, so didn't qualify that way for oxygen paid for by Medicare. The pulmonologist is convinced I need oxygen both day and night. During our visit, sitting still, my oxygen levels were in the 80s. When she put me on oxygen to test it, my oxygen levels also dropped instead of increased. She is trying to figure out a way to justify oxygen without the six-minute walk test.

I think the wearing of face masks for COVID protection is screwing up my walk test, as I hyperventilate while wearing a mask and moving. Even when I was ready to collapse from exhaustion, my oxygen levels were higher than they normally are when sitting and resting. When I am waiting in line at a grocery store, I am sure I look rather scary, as I am breathing so hard with a mask on and feeling like I could collapse at any moment. Everyone in my area wears masks and follows social distancing at the grocery store, and I am not trying to get out of wearing a mask for COVID protection. However, I don't think I will ever breathe normally enough while walking and wearing a mask. I would probably pass out first.

I forgot to ask about overnight oximetry. I am going for pulmonary function tests on Monday. Will any of them possibly give any help in qualifying for oxygen?

The pulmonologist said she would be sending a prescription for oxygen, a nebulizer, concentrator, etc. to the DME on Thursday and to call the DME to check on the status on Friday. This is the same DME as I use for CPAP, and I am still waiting for the new CPAP machine. The person I talked to had no record on status of either oxygen prescription or the CPAP machine. Evidently, they are short-handed and the phone call went to the central office, not the local office I called. You would think they have to custom build the Airsense 10 APAP instead of getting one off the shelf.

The night after the visit to the pulmonologist, we had an unexpected 14-hour power outage overnight and I got to experience what sleep without CPAP felt like--aka miserable.

If anyone has any more suggestions on how to meet Medicare requirements for oxygen that don't involve a six-minute walk test, I would appreciate it. Also, if anyone can give me an idea of the costs involved in paying for home / portable oxygen without insurance, that would be helpful. My only excursions these days are to medical facilities and the grocery store/pharmacy, thanks to the risk of COVID. I don't need to convince the pulmonologist I need oxygen.

Thank you for your help.

Maryland CPAPer

[chunkyfrog]

Look for a face mask with extra low resistance.
Or make one.
When cloth touches the face, it gets wet--restricting airflow wherever it is wet.
I recently bought iron-on interfacing to render cloth masks stiff enough to stand out from the skin.
I will let you know how it works, but I have seen stiffened masks in use--and want one.
I love my Mad Max mask, but would like to try a different look.

[palerider]

I think the wearing of face masks for COVID protection is screwing up my walk test, as I hyperventilate while wearing a mask and moving. Even when I was ready to collapse from exhaustion, my oxygen levels were higher than they normally are when sitting and resting. When I am waiting in line at a grocery store, I am sure I look rather scary, as I am breathing so hard with a mask on and feeling like I could collapse at any moment. Everyone in my area wears masks and follows social distancing at the grocery store, and I am not trying to get out of wearing a mask for COVID protection. However, I don't think I will ever breathe normally enough while walking and wearing a mask. I would probably pass out first.

https://www.youtube.com/watch?v=k5npQivAmcE

[MarylandCPAPer2]

My question is not concerning how to make a mask I can breathe in. My question concerns how to qualify for oxygen through Medicare via a means other than the six-minute walk test. I am never going to "fail" it because hyperventilating makes my oxygen levels go up, not down to the levels that qualify for oxygen through Medicare.

[colomom]

I don’t know how much portable concentrations cost. The EverFlo is the quietest concentrator you can get for use at night, last January I was able to get a new EverFlo for $600. That was before COVID, I wouldn’t be surprised if prices have gone up due to increased demand. Look around online if you’re paying out of pocket you don’t have to buy from a DME. You may be able to find a refurbished or used one for a lower price.

Hopefully the nebulizer will help with the daytime shortness of breath. For the hyperventilating you might try researching breathing and relaxation techniques. I know when I had undiagnosed asthma I used to hyperventilate when I felt an asthma attack coming on (i think it is a natural reaction to that feeling of air starvation). If you can learn to slow and deepen your breathing it might help you make it thru the grocery store.
It sounds like you found a good doc. Hopefully the doc will figure out the underlying cause(s) of your problems and can run you through the right hoops to get insurance to cover the treatments that will help you.

[chunkyfrog]

Look for a used one.
People get newer ones or no longer need one.
(Sympathies, but opportunity)

[palerider]

My question is not concerning how to make a mask I can breathe in. My question concerns how to qualify for oxygen through Medicare via a means other than the six-minute walk test. I am never going to "fail" it because hyperventilating makes my oxygen levels go up, not down to the levels that qualify for oxygen through Medicare.

So, what you want is to con medicare into paying for something that you don't NEED medically. Got it.

[chunkyfrog]

So, the doctor says she needs oxygen, but Meducare does not.
This happens all the time, money and politics "trump" science.

[palerider]

So, the doctor says she needs oxygen, but Meducare does not.
This happens all the time, money and politics "trump" science.

Of course, doctors are *never* wrong.

[chunkyfrog]

So, the doctor says she needs oxygen, but Meducare does not.
This happens all the time, money and politics "trump" science.

Of course, doctors are *never* wrong.

Maybe sometimes--but seldom, compared to those with no empathy for the patient.
Or no soul . . .

[MarylandCPAPer2]

So, the doctor says she needs oxygen, but Meducare does not.
This happens all the time, money and politics "trump" science.

I don't think it's gotten to Medicare yet. The doctor is trying to find another way to justify oxygen within Medicare's guidelines. My resting oxygen saturation level is in the low 80s most of the time. When I have to exert myself, evidently I manage to increase my oxygen saturation level long enough to accomplish short tasks before I collapse and can't catch my breath, whether wearing a mask for COVID protection or not. The times I have not been able to catch my breath for a long time after minor exertion have been at home, outside in cool air, away from people, without a COVID mask.

My current "go to," when short of breath at home, is to lay down and use my CPAP. It isn't very helpful but it calms me down eventually. When I can't catch my breath at all, I call my dr. First time got me a COVID test. The second time got me an ER visit and 5 days in the hospital on oxygen. I should have stayed in the hospital, but 5 days seems to be my limit before I fight like a tiger to get out and they give in. Is there something "magic" about a 5-day hospital stay being allowed by Medicare when you are admitted via the ER? This is my 2nd 5-day hospital stay. The last one was in October for a 5-inch blood clot in my bladder, cause unknown. I fought like a tiger every day to get out that time, but it took 4.5 miserable days for the bladder clot to be flushed out.

Maryland CPAPer2

[MarylandCPAPer2]

The pulmonologist's office has faxed an order to the DME for Oxygen 2LPM and a standard nebulizer, for continuous use. She put a diagnosis of Reactive Airways Disease and OSA. Length of need 99 months, which I am told means forever.

I had pulmonary function tests this morning. I got a copy of the raw results without interpretation.

Does anybody know of an online forum such as this for people who use oxygen where I can ask stupid questions such as I ask here? I have NO experience with oxygen and want to know what I am getting myself into, preferably before it is delivered and I have no idea how to set it up or what to ask.

Thanks for your help.

Maryland CPAPer 2

[MarylandCPAPer2]

My question is not concerning how to make a mask I can breathe in. My question concerns how to qualify for oxygen through Medicare via a means other than the six-minute walk test. I am never going to "fail" it because hyperventilating makes my oxygen levels go up, not down to the levels that qualify for oxygen through Medicare.

So, what you want is to con medicare into paying for something that you don't NEED medically. Got it.

No con here. My pulmonologist prescribed oxygen, after I thrived on oxygen in the hospital for 5 days and have been non-functional at home since then. She is convinced I medically need it. Evidently, she thinks there are means other than the six minute walk test to satisfy Medicare requirements.

We shall see if I get my oxygen paid for by Medicare or die first. I am sure you [palerider] are rooting for the latter.

Does anyone know of any online forum or support group for home oxygen users? The equipment looks a lot more complicated to me than CPAP, which few master on their own. From what I have read so far, you sign a 5-year contract with a DME for whatever oxygen equipment you end up with, and the DME still owns the equipment at the end of the 5 years. Knowing nothing about oxygen equipment and not being willing to commit to anything about which I know nothing for a 5+ -year period, I don't want to get stuck with the equivalent of a CPAP brick.

Maryland CPAPer 2