O2 Desaturation, Oxygen Supplement, AHI 85 untreated, Help?

[Mr Capers]

Hi Everyone,

I've been using a BiPAP AutoSV since August 2009. I've been on supplemental O2 at 3 liters since November 2009. All this was based on a take-home sleep study and one night using a pulse oximeter.

I had a full polysomnogram on January 18, 2010. On January 25, I had a full night titration. Based on the numbers I see from those two reports, I question if I still need the supplemental O2.

Here is some data from the Sleep study on 1-18.


As you can see, my desats were numerous and moderately serious. Not to mention an AHI of 84.6! But, this is a snapshot of me basically untreated. Although I had been given the BiPAP AutoSV, I had never been titrated to find the pressures that resolved my apneas/hypopneas. My sleep Dr. had set my pressures on my prescription at 20/5/5 with Auto as the Backup rate. But, no titration, so he never knew what this would do for my situation. He never followed up.

Here is similar data from my Titration study of 1-25-10.


My titration study recommended pressures of 14/6/6 with a Backup rate of Auto. At these pressures my AHI was in the range of 3, and most of my desaturations were resolved.

I'm planning to try my pulse oximeter at night to see what kind of desats I'm having now, but would appreciate feedback from those more knowledgeable than me.

If I can drop the O2 supplementation, travel would be possible again. Right now, it is a forbidding prospect. The O2 concentrator is the size of R2D2, sounds like a diesel truck, and heats our bathroom quite nicely during the winter. It weighs maybe 48 pounds. Imagine having one of these in a motel room!

Looking forward to some profound responses, maybe a visit from Muffy, SWS, and who knows?

Happy Naps,
Mr Capers

[Slinky]

Are we to understand that both the evaluation PSG and the titration PSG were done on room air? Are you sure that provision wasn't made for the addition of 02 w/o waking you to introduce the 02 to the PAP system during the titration?

You could always use your own oximeter for an overnight oximetry w/PAP and no 02 and an overnight oximetry w/PAP and 02.

Do you own your 02 concentrator or do you "rent" it from a local DME provider? My 02 concentrator is provided by my local DME provider. When I travel they either loan me (at no extra charge) a 3L concentrator which is considerably smaller than my at home 5L to take in my car. We put it in the backseat and secure it w/the seat belt. If I'm not going by car then my local DME provider makes provision w/a local DME provider at my destination to deliver a 5L concentrator to wherever I will be staying and to pick it up when I notify them I am leaving.

[Mr Capers]

Hi Slinky,

Thanks for your thoughtful response. I'll try to take your questions/comments in order in my reply.

Are we to understand that both the evaluation PSG and the titration PSG were done on room air? Are you sure that provision wasn't made for the addition of 02 w/o waking you to introduce the 02 to the PAP system during the titration?

You are right. Room air, no O2 for either the sleep study or the titration.

You could always use your own oximeter for an overnight oximetry w/PAP and no 02 and an overnight oximetry w/PAP and 02.

I plan to do this. Will post as soon as I can get it together to do each test.

Do you own your 02 concentrator or do you "rent" it from a local DME provider? My 02 concentrator is provided by my local DME provider. When I travel they either loan me (at no extra charge) a 3L concentrator which is considerably smaller than my at home 5L to take in my car. We put it in the backseat and secure it w/the seat belt. If I'm not going by car then my local DME provider makes provision w/a local DME provider at my destination to deliver a 5L concentrator to wherever I will be staying and to pick it up when I notify them I am leaving.

Is your 3L concentrator continuous?

I "rent" from Apria (Bless their hearts). When I called about travel arrangements I was told that all their small concentrators were "demand type" and could not be used with an XPAP. In other words, they were for O2 patients who used them with a nose canula - they provide O2 only when the patient breathes, not continuous O2 into the hose connection.

For travel, I was told to submit an itinerary 30 days in advance and they would arrange for the local Apria office to deliver the 5L concentrator to each motel and we could enjoy the sound and heat from the 5L machine IN OUR ROOM each night of the trip. The notion of vacation trip has by now left the building. Not to mention the thought of a spontaneous weekend getaway!

I've looked online and found that there are small/portable 3L continuous concentrators available. When I left word that such concentrators existed, I never got a call back.

So, I thought, maybe I don't need the O2 any more now that I have a correct prescription. That's why I posted the before/after data.

Hope I was clear. Please ask again if I you need more info, and many thanks for your interest.

Mr Capers

[Maryaz]

Hi Mr Capers; I am not too good with the sleep part of all of this. I am familiar with some o2 concentrators. Did anyone specifically mention the SeQual Eclipse. Not sure if it can work with a cpap machine but it does continuous and is one of the popular ones.
http://www.sequal.com/

This site is this most informative on oxygen and is highly recommended. I use oxygen with my Bipap and instead of my fifty foot line plugging into my cannula, I remove the cannula and the line goes into the bipap.
http://www.portableoxygen.org/#articles

Hope you can still get your plans together.

[Slinky]

It really does depend on your motel room. Most I have stayed in there is a bit of a short wall between the sink/mirror and the rest of the room. I've stashed the concentrator under the sink (it just barely fits if there is, hopefully, carpeting there). Usually that puts the concentrator against the wall which also helps to block the sound and heat. And since all the motels I've stayed in had Air Conditioning the heat wasn't a problem anyway.

The concentrators I've used have all had wheels on them so you could even put the concentrator in the bathroom, bring a small square of carpeting to put it on in case the bathroom floor is tile and shut the door at night. During the day just stash it somewhere out of the way.

You learn to be a bit innovative using this stuff. I've driven 8 hours to Lexington, KY, had the concentrator and 02 tanks delivered to my motel and walked all over KY Horse Park during the Rolex and running up my credit card at the Trade Fair there burning thru those 02 tanks rather quickly what w/all the walking. In addition to my 02 tanks (I took 2) each day (w/an extra 2 in the car in case I needed them) I carried a small canvas folding chair w/a large pocket under the seat for my usual purse contents and could just sit and rest when needed, usually in front of one of the huge screen TVs to watch the Dressage or Cross County events. I did my Trade Fair shopping during the noon break (so I could take my purchases back to the car) or after the events were over for the day so I wasn't carrying a lot of other stuff too.

I usually bring an extension cord and a 4 plug "surge bar" just in case as some of the older motels don't have enough convenient outlets. So far I've only need them once.

I'm so sorry you are stuck w/Apria. Goshes, my DME is a rather small provider, covering maybe 1/3 of this state or less. I''ve been very happy w/them. I had reservations on how things would be handled when I travel but they've been most cooperative and they've even helped w/planning what I need. Plus even when they send my equipment w/me they make provisions ahead of time w/a company in the area I'll be at should any problems arise. Like the time the 3L concentrator died on me.

My 02 tanks can be run either on "pulse" delivery or 2L continuous. Of course, on 2L continuous they don't last anywere near as long as on 2L "pulse". Our PAPs REQUIRE continuous 02 concentrators when supplementing 02, we can't use the "pulse" regulators w/them. My doctor has scripted a Helios as the portable portion is lighterweight than the B tanks but I'm afraid of filling the portable from it. I never thought to ask if the Helios itself can be used w/PAP but I don't think so. I'm more comfortable w/my current arrangement. They've given me a "constant flow" regulator for my E tanks that I use in the basement when I use my treadmill and exercise bike and for power outage emergencies as well as the "pulse/continuous flow" regulator for my B tanks when I'm "out and about" town.

Get a recording oximeter, take a short trip, 3-4 days maximum (if you have a laptop to download the oximeter info) w/o the concentrator and see how you do over those 3-4 days as far as desats. One night in the lab doesn't tell the entire story. We don't sleep the same every night.

Good luck and God bless.

[Mr Capers]

Hi Slinky, Maryaz,

Thanks for the advice! Maryaz, I have a list of 3L concentrators that are portable and continuous. Thanks for the links.

Slinky, sounds like you have this routine pretty well nailed. I'm not on O2 in the daytime, just at night. However, our September trip to Santa Fe (at 7,000 ft.) may indicate I need it daytime, too! Anyway, I really appreciate all the tips on everyday use of both the O2 concentrator and the tanks.

But, my original question was - do I even need supplemental O2 based on getting a proper prescription as my titration study showed? Titration study was 1-25-10.

Can you help with any analysis there?

Happy Naps,
Mr Capers

[Slinky]

I can't help w/the high altitude situation. I just don't know. Certainly at "normal" altitudes given your room air titration study you shouldn't still need supplemental 02 - BUT - I'd be sure to ask my sleep doctor about traveling to high altitudes w/my PAP and be absolutely sure that that in-lab titration was done on room air w/o 02 supplementation. Usually, if the sleep lab knows you've been on supplemental 02 or suspects you may end up needing it, the bleed-in setup is ready so that they can add the 02 w/o waking you during the titration.

[Maryaz]

Slinky, was glad to read where you said ‘we don’t sleep the same every night’. I never heard anyone say that yet and I thought common sense would tell you that. Lot of good information here.

Mr Capers, hope when you check it out, that you won't have to hassle with the o2. If you need it, best to use it.
Have a good week.

[Mr Capers]

be absolutely sure that that in-lab titration was done on room air w/o 02 supplementation.

Hi Slinky and Maryaz,

Slinky, I don't know what to tell you except to give you quotes from the Titration Study. Thus:

"IMPRESSION: 1. Complex sleep apnea with clinical response to auto servo ventilation at 14/6/6 cm H2O. Mask: Respironics Easy Life medium.
2. Periodic limb movements of sleep, mostly without arousal.

RECOMMENDATIONS: ASV at settings of 14/6/6 cm H2O could be utilized with fine tailoring of settings based upon information from downloadable diagnostics."

So, oxygen supplementation is not mentioned at any point in the titration study report.

I don't talk to my sleep doctor if it is possible to avoid it. He is a jerk as a person. As a doctor, I believe that he is not qualified to treat me. I mentioned having a data capable machine in my one phone conversation with him and he responded that it was a bad idea for me to see my data for fear "that I would obsess upon a number." When I asked him if a case of CompSA (mine) should not have a full sleep study, not just the take-home version, he said it was probably not necessary. When I told him I had never been titrated on my auto servo ventilator, as the manufacturer insists, he said titration in a sleep lab was "not a substitute for his clinical judgement." He set my prescription at 20/5/5. With no titration! And left me with no follow up.

The reason I got to see the sleep Dr. is that I requested a pulse oximeter, wore it overnight, and it showed significant desaturations. I saw the report at my only appointment and the senior RT had written O2 supplement @ 3L. This was with my settings of 20/5/5. He called me in to insist that I use O2 at night and I told him I wanted my present ventilator settings and therapy optimized before adding O2. We had a repeat of the "my clinical judgement," and data is unnecessary because I was "obsessing upon a number" argument. All this was in November, 2009. I was diagnosed in June, 2009. Got my machine in August.

I had a real fight with him to get my sleep study and my titration. Those happened in January, 2010.

I'm setting up an appointment with my PCP and planning to ask for a referral to a decent sleep doctor. It will be quite a drive, but worth it. I might ask the new sleep doc about altitude issues but I wouldn't ask my current one for the time of day.

When I read over my titration study, it seemed to show that desaturation was not an issue. It seems to confirm my initial thought that optimizing my therapy eliminated the need for the supplemental O2. I'm glad you seemed to see the same.

Sorry for the rant, but I can't think about my one appointment with the sleep doctor without getting angry.

Happy Naps,
Mr Capers

[Slinky]

Yeah, from the sounds of it, I'd drop that sleep doctor w/o even thinking about it. Make the drive to see a better sleep doctor. Altho I've gotta tell you there aren't a lot of really good ones out there. Most of them are at least pleasant tho.

[Maryaz]

I don’t yet have an established opinion on sleep studies and doctors. I guess I realize the need for the studies. I think I am starting to see the abuse by the providers of the equipment. I also spent few years buying my own oxygen until I got on medicare and now I see what they get and what I paid. Pricing??

My sleep doctor is my pulmonary doctor and I like him and trust him. I am starting to question how much the labs are in for the patients or the financial earnings. Like so many things, you just need the right employees, and that being the ones that care. Just like a doctor with a good ‘bedside’ manner.

Looks as though Mr Capers’ doctor has none of the above. I can relate to your statement about getting so angry at just the thought. Had situations like that.

Where I go to see my Pulmonary Dr, they also have a sleep lab. My first sleep study was done there. It was like a nightmare. I swore never again ever would I do that. This woman was like a programmed robot. I could say like she was reading a script out of a book. I connect very well with my Pulmonary Dr. I didn’t care if I ever heard anything more on this. Well, that is the one time the doctor calls in good timing. Few days and he called. I told him I would never do that again. He needed me to come back for another sleep over to get more time. They didn’t have me hooked on the cpap long enough. I adamantly said no, no. I am easy going and nice person and don’t speak up much. I was still feeling lucky I got out of the lab alive.

Long story short I agreed, after I settled down, that I would come in see them during the day and they would hook me up. In the meantime during this 3 month recovery I started attending my pulmonary rehab again. Shorten story, a sleep tech did a class and we connected. He heard my story. I ended up doing another sleep study at the hospital.

This may be a little different than a bad doctor but believe me sleep labs or techs are not equal. The two experiences were as different as night and day. I don't blame my doctor for the tech in the lab. I let him know my feelings and him being my pulmonary doctor and the sleep Dr are two different things.

Guess I got a little carried away but felt I should add that to the other bad experience.

[Slinky]

Just shows to go you the range of experiences when dealing w/the sleep profession. I've had PSGs at 3 different sleep labs, all three labs the RPSGTs were great. The one sleep lab uses multiple doctors so there is not the continuity of care as if you were under the care of one particular doctor which makes for not so satisfactory experiences. This lab's owner/manager is great! The alternating doctors at this sleep lab were all pleasant but not particularly impressive nor particularly interested in getting to the root of any problems once they dictated your titration PSG results. One of the alternating sleep doctors stood out from the rest but he left that sleep lab and moved to his own office and now sleep lab too that is an hour and a half drive from my home. One sleep lab the sleep doctor was a complete JERK! And I did write a letter of complaint. All 3 sleep labs were accredited and all sleep doctors were acrredited. So - accredidation doesn't mean as much as you would hope or expect. I guess you just never really know until you try them out.

[slaaplekker]

I just started on therapy the last week of May. I've not really felt any better since starting therapy and wake up almost as much as I did before mostly because of mask or PLM/RLS issues or pain. After the first week of therapy I new that the stats from the APAP were just one part of the understanding your data. It would be nice to have all of the information you get from a sleep study whenever we need it but that isn't realistic so I decided to get at least an Oximeter to compare with the APAP stats. That additional data is very helpful. My Dr. was already planning on a follow up take home Oximeter study but now I can do one any night I want. Already knew I was still having desat events but I did bring the one home from the sleep study and it showed and average of 6 desats an hour for a total of 43 events over 7 hours with the significant time being spent below 80% even on the APAP. Compared those results to my personal Oximeter for the same night and they looked very close so I know my Oximeter

Since then I've had to add O2 at 2 Liters as a supplement. The nice thing is that the O2 concentrator is pretty quite but does put out some heat. I sleep with white noise turned on anyway so I really don't hear the concentrator and it doesn't bother my wife either. And while it isn't small it is something I can take when I travel if necessary. So far I haven't traveled with it.

If I had to I would buy one of the smaller quieter concentrators myself since the price isn't off the charts and quality of life would be improved with a quieter and easier to transport concentrator. I guess I'm lucky that the one that I have is small enough and quiet enough. Since it looks like I will be on O2 for the rest of my life there is a chance that I might someday buy a small one just for travel.

Get the Oximeter and see what is going on with your O2. Doing it for a few nights in row and then you will have a good baseline to talk with your Dr.

Good Luck
John

[Slinky]

slaaplekker, what concentrator do you currently have that is relatively quiet and decent size??

Which ones are you looking at that are smaller,quieter w/the price not off the charts??

[slaaplekker]

slaaplekker, what concentrator do you currently have that is relatively quiet and decent size??

Which ones are you looking at that are smaller,quieter w/the price not off the charts??

This is the one that I have

http://everflo.respironics.com/

I think my DME is a respironics shop whenever he can be. I tried to get a S9 from him but he said he was out. He has both OSA and uses supplemental O2. He said he preferred the System One to the S9 but that is what he uses. Both masks he gave me were respironics too. But I'm pleased with the everflo, I can't hear it at all over the white noise that I use in the bed room when I'm sleeping. I would guess that if you are used to having a quiet room it would be audible. To be honest the ringing in my ears is much more of an issue and I have learned to tune it out.

My wife says that the noise from the APAP and the O2 Concentrator are not a problem. But then that is what getting used to sleeping with white noise is good for. One the kids were teenagers it came in handy having the white noise since it helps cover up sounds of teenagers watching TV etc. at 11pm on a Friday It is 45dBA which isn't bad.

Now we take a white noise machine where ever we go and it helps cover up hotel noise etc. Once it gets turned on you automatically start thinking of sleep so that is a bonus too.

I haven't tried to travel with the concentrator yet but think it shouldn't be too much of an issue since it is on wheels and I can lift it. Just need a place to plug it in.

regards
John