What should I tell the sleep doc?

ww · Post by ww » Tue Apr 29, 2008 4:40 pm

What should I tell the sleep doc?

After 45 days and trying lots of things I have concluded that you CANNOT reduce apneas to zero, so made appointment with my sleep doctor for this Friday to discuss whether bi-pap would be helpful or not. Titration pressure was 7 cm. Data shown below includes 7 cm (worst data) Auto (next worse data) then 10 cm, 10.5 cm, and 11 cm which look promising, but still only one day of zero apneas. I wonder how much higher pressure I should try to reduce apneas?

Mask also seem to make a difference and in the log show Optilife, Comfortful2, UMFF med, UMFF small, Comfort gel, and Hybrid. Best data was always with the UMFF masks. I was really surprised that pressures above 10 cm still did not reduce the apneas to zero since it only took 7 cm in the sleep study to do this!

Leak data for all of the full face masks seems good, but for the nasal masks, some mouth-breathing was obvious with resulting loss of therapy.

The log below allows the data to be tied back to a specific pressure, cpap, apap, or mask.

CPAP LOG: Received Thursday March 13. The DME finally sent Remstar Auto M Series with Humidifier. They did not have ResMed Mirage Swift II mask and delivered system with Respon Optilife Nasal Pillow mask.

March 13: Settings: Auto Aflex max 10 min 5 aflex 2 autoramp:05 min Autoram 4.0 cm/= h20 max feature off auto off feature off split night time off show al=H/Leak off remainder off; Data was 6.8 hours sleep Leak 24L/Hr AHI=8.4. 90% press=10.

March 14: Settings CPAP 7in cflex 2 Data was Leak 31.92 AHI=16.0 (14.4AHI on 7 fixed CPAP
March 15: Auto 12 max 6 min Aflex=2 Data was Leak 32.7 AHI=9.8 90% pressure 10.7 AHI=12 avg (11.2 this night).
March 16 Auto Leak 28.81 AHI=4.7
March 17 Auto Leak 36.85 AHI=6.1
March 18 Auto Leak 28.44 AHI=4.5
March 19 Auto Leak 30.55 AHI=6.1
March 20: Data Readouts Made. Set back to Auto max 10 min 6 autoramp 5. Humid set to 3. Aflex =2. Leak 30.6 AHI=10.8
March 21 Leak 30.45 AHI=8.2
March 22 Leak 28.14 AHI=4.7
March 23 Leak 33.14 AHI=12.1
March 24 CPAP=10 med hum 3 Leak 32.81 AHI=14.1
March 25 Same except large nasal prongs Leak 42.66 AHI=4.5
March 26 Leak 37.02 AHI=5.7
March 27 Leak 39.29 AHI=5.5
March 28 (Friday) received Comfortful Mask Large 65.75 avg leak 22.5% night in large leak. AHI=5.8
March 29 (Saturday) 42.1 avg leak Snore from mask 14.5 AHI=4.1
March 30 (Sunday) 45.02 avg leak Snore from mask 0.9 12.6 night LL AHI=5.1 Gave up and put OptiLife mask back on.
March 31 OptiLife mask 35.37 leak AHI=8.8
April 1 OptiLife 36.4 avg leak (missed first half of nigh that was good)
April 2 OptiLife 37.53 avg leak AHI=5.2
April 3 CPAP=10 rcvd ResMed UMFF Leak 47 CPAP=10 H=2 AHI=1.5 OA=0.8 **
April 4 CPAP=10 UMFF Avg Leak 41.07 AHI=2.6 S OA=1.6 **
April 5 UMFF Auto 8/12 A=2 Leak 37.2 AHI=4.3 S OA=0.6
April 6 UMFF Auto 8/12 Leak 35.3 AHI=3.1 OA=0.5 (2hrs data)
April 7 UMFF Auto 8/12 Leak 44.07 AHI=6.5 OA=2.3
April 8 UMFF Auto 8/12 Leak 39.95 AHI=5.6 OA=1.4
April 9 UMFF Auto 8/12 Leak (Lost 7 hrs/ Lightning Storm)
April 10 UMFF 10.5 Leak 41.98 AHI 0.3 *** OA=0**
April 11 UMFF 10.5 Leak 45.13 AHI=0.7*** OA=0.1**
April 12 UMFF 10.5 Leak 46.39 AHI=1.2** OA=0.4
April 13 UMFF 10.5 Leak 44.01 AHI=0.8 OA=0.3
April 14 UMFF 10.5 Leak 44.19 AHI=1.7 OA=0.6
April 15 UMFF 10.5 Leak 42.33 AHI=1.4 OA=0.1**
April 16 UMFF 10.5 Leak 43.45 AHI=3.9 OA=2.0
April 17 UMFF Small 10.5 Leak 42.08 AHI=1.0 OA=0.5**
April 18 Gel Small Leak 41.79 AHI=3.3 OA=1.0 **
April 19 Hybrid Leak 60.51 LL22.2%Night
April 20 UMFF Small 11.0 Leak=45.83 AHI=0.9 OA=0.2**
April 21 Hybrid 11.0 Leak 64.05 LL 30.3% (Bad) AHI=4.7 OA=3.0
April 22 UMFF Small 7.0 Leak=38 AHI=5.5 OA=0.1
April 23 UMFF Small 7.0 Leak=45.07 LL40min AHI=10.3 OA=2.3
April 24 Hybrid 7.0 Leak 32.85 AHI=12.2 OA=2.8 (No Leaks)
April 25 Hybrid 11 Leak=41.79 AHI=3.1 OA=0.8
April 26 Hybrid 11 Leak=42.56 AHI=2.3 OA=1.2
April 27 Hybrid 11 Leak=43.09 AHI=2.1 OA=0.1.4 ( 90 min nap)
April 27 UMFF Small 11 Leak 44.44 AHI=1.1 OA=0.3**
April 28 UMFF Small 11 Leak 45.75 AHI=1.7 OA=0.3**

bdp522 · Post by **bdp522** » Tue Apr 29, 2008 5:06 pm

I think you may be trying too hard to get zeros. You seemed to do best with the UMFF at 10.5, if it were me, I'd stick to that for now. The numbers you got with this set up are excellent!
I also think you need to give it a week or two before making any changes. Everytime you make a change wait a week or two so you have time to adjust to the change and get the mask tweaked properly.

Brenda

Slinky · Post by **Slinky** » Tue Apr 29, 2008 5:19 pm

You're chasing windmills changing pressure and/or mask repeatedly night after night.

Patience is key here. Make ONE CHANGE whether mask or pressure and STAY there for one full week. Check the weekly data. Make ONE more change if you are not satisfied and stay w/that change for ONE FULL WEEK, if you are still not satisfied then ONE change for another week.

This is a PRIME example of gaining access to the Clinician's Setup Menu before having any knowledge of how to properly utilize that info.

ww · Post by ww » Tue Apr 29, 2008 6:02 pm

Slinky wrote:You're chasing windmills changing pressure and/or mask repeatedly night after night.

Patience is key here. Make ONE CHANGE whether mask or pressure and STAY there for one full week. Check the weekly data. Make ONE more change if you are not satisfied and stay w/that change for ONE FULL WEEK, if you are still not satisfied then ONE change for another week.

This is a PRIME example of gaining access to the Clinician's Setup Menu before having any knowledge of how to properly utilize that info.

Chasing Windmills?

It took 21 days to get an AHI under 4.0! At that time, I finally got a ResMed UMFF mask (wrong size) that made a big difference and it sure didn't take 7 days to see the difference.

After that It was obvious the Auto only pointed you in the right direction. I spent 5-7 days at a pressure unless it was obvious that it didn't work, such as the Titrated 7 cm, which never worked right in the first 3 days or the last 3 days of use.

I kinda hate to tell the doc that his numbers are working, when it is obvious, even to me that they do not!

The appointment is Friday, what would you tell the sleep doc?

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): resmed, AHI, auto

jules · Post by **jules** » Tue Apr 29, 2008 6:10 pm

I suspect your doc is going to look at this information and say It's working, next patient please. His goal was probably to get your average AHI under 5.

Why would you think a Bipap machine would be better?

ww · Post by ww » Tue Apr 29, 2008 6:23 pm

bdp522 wrote:I think you may be trying too hard to get zeros. You seemed to do best with the UMFF at 10.5, if it were me, I'd stick to that for now. The numbers you got with this set up are excellent!
I also think you need to give it a week or two before making any changes. Everytime you make a change wait a week or two so you have time to adjust to the change and get the mask tweaked properly.

Brenda

Thanks so much for looking that carefully at the data. I agree, that 10.5 cm looks promising and above that leaks are more troublesome and the cflex doesn't seem to be as effective.

It seems to be a cause for concern that after 21 days, there are still many times a night that my breathing stops even at pressures above 10 cm, which seems to be the magic number for eliminating apneas in most sleep studies. My wife concludes that stopping breathing is cause for alarm that the therapy is not working as well as it should. That is why the question concerning bipap.

I am sure that Friday will be my first and last opportunity to get a script change if I need it as leased equipment changes after 2 months seem to be at the discretion of the DME as they don't have as long to recover the purchase price, and it becomes even harder to change DME's to one that is closer than 75 miles.

Slinky · Post by **Slinky** » Tue Apr 29, 2008 6:37 pm

45 days to adjust to CPAP and wearing a mask, much less several different masks until you find one that works for you just is NOT that much time. I doubt you will encounter ANYONE in this forum who consistently achieved 0.0 AIs w/in the first 60 days they were on CPAP.

You do understand that an AHI <=4.9 is considered "normal" and it is highly unlikely you are going to find a doctor who is going to be concerned or get in a twit about your reported AHIs over your first 45 days of therapy?

There's no sense in beating around the bush. Be right up front w/this sleep doctor. Present your data, Point out the best mask/pressure results. Hopefully the doctor will respect your desire to take an active part in your therapy and will be willing to work WITH you as a team.

Wulfman · Post by **Wulfman** » Tue Apr 29, 2008 7:30 pm

What should you tell him? If he prescribed a pressure of 7, it's obvious that either a CPAP pressure of 10.5 or 11 with the UMFF are your best combinations......you can tell him that HE "guessed" wrong at your pressure. Didn't bother me to tell my sleep doc that I didn't need a pressure of 18......and 10 was working fine (at that point).

If this is a pre-scheduled appointment......fine. If it's not, I'm not sure why you need to see him......you're numbers look pretty good. If you're FEELING GOOD, that's what counts.

Don't try to tweak your pressure settings for AHIs of 0.0......it won't happen......at least on a regular basis and you might not sleep well there, either.

Den

ww · Post by ww » Tue Apr 29, 2008 8:31 pm

[quote="jules"]I suspect your doc is going to look at this information and say It's working, next patient please. His goal was probably to get your average AHI under 5.

Why would you think a Bipap machine would be better?

ww · Post by ww » Tue Apr 29, 2008 9:08 pm

Wulfman wrote: Don't try to tweak your pressure settings for AHIs of 0.0......it won't happen......at least on a regular basis and you might not sleep well there, either.
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Does this mean that is unreasonable to expect apneas to be very close to zero each night?

jules · Post by **jules** » Tue Apr 29, 2008 9:30 pm

ww wrote:A bipap machine will do everything an apap or cpap will do plus it allows you to independently set the inhale and exhale pressure to allow easier breathing. Set to 7 cm and 11 cm, I think it would work better and I know it is easier to breathe out against the lower pressure with biplex. If the pressure gets above 11, then there is a distinct advantage to the bi-pap for me as cflex seems to become less effective at higher pressures.

I doubt they would script it without another sleep study and based on the data from the first one, I would not consider taking another one. Much rather use an auto bi-pap and look at the data with the sleep doc, or if he is a disinterested as it sounds like he may be, then with other forum members that are quite knowledgeable in the actual machine operation and settings.

All of a sudden you went from talking bipap to talking auto bipap. A bipap can not do everything an APAP can. A bilevel machine can be issued that isn't necessarily the Respironics Auto Bipap.

Insurance (those nasty people) want certain criteria met before they will pay for a bipap. CPAP failure is one possibility but you don't appear to have that met. There are a few diagnosis of heart and or lung issues that should also give you a bipap. Insurance may require another PSG and bipap tritration. Again, what the insurance requires is something you need to be prepared to talk about on Friday.

When you stop breathing at night, it is on inhale or exhale?

Expecting your AHI to be close to 0 every night might be very unreasonable. There are those who can do it and those who can't. It might be interesting to see the AHI vs pressure data you have not just the nightly AHI data.

Remember, you had to have an AHI of at least 5 to get the diagnosis of OSA. Think about all those people out there with AHI's of 4 --- that means during an 8 hour sleep period they stopped breathing 32 times. They don't even get to try CPAP unless they pay OOP for a machine. How would your wife like that if she doesn't like your current AHI's?

BTW - have you got your answer ready for when the doc asks you why you weren't staying at 7?

bdp522 · Post by **bdp522** » Tue Apr 29, 2008 9:39 pm

Does this mean that is unreasonable to expect apneas to be very close to zero each night?

Yes. Any AHI under 5 is considered normal. I can't imagine any doctor trying to get it lower. If your AHI is 5 or under during a sleep study you won't even be considered for xpap treatment.

Many spend months and even years trying for the numbers you got with the UMFF at a pressure of 10.5.

You found something that works. Now be happy with it!

Brenda

ww · Post by ww » Tue Apr 29, 2008 10:08 pm

jules wrote:
ww wrote:A bipap machine will do everything an apap or cpap will do plus it allows you to independently set the inhale and exhale pressure to allow easier breathing. Set to 7 cm and 11 cm, I think it would work better and I know it is easier to breathe out against the lower pressure with biplex. If the pressure gets above 11, then there is a distinct advantage to the bi-pap for me as cflex seems to become less effective at higher pressures.

I doubt they would script it without another sleep study and based on the data from the first one, I would not consider taking another one. Much rather use an auto bi-pap and look at the data with the sleep doc, or if he is a disinterested as it sounds like he may be, then with other forum members that are quite knowledgeable in the actual machine operation and settings.
All of a sudden you went from talking bipap to talking auto bipap. A bipap can not do everything an APAP can. A bilevel machine can be issued that isn't necessarily the Respironics Auto Bipap.

Insurance (those nasty people) want certain criteria met before they will pay for a bipap. CPAP failure is one possibility but you don't appear to have that met. There are a few diagnosis of heart and or lung issues that should also give you a bipap. Insurance may require another PSG and bipap tritration. Again, what the insurance requires is something you need to be prepared to talk about on Friday.

When you stop breathing at night, it is on inhale or exhale?

Expecting your AHI to be close to 0 every night might be very unreasonable. There are those who can do it and those who can't. It might be interesting to see the AHI vs pressure data you have not just the nightly AHI data.

Remember, you had to have an AHI of at least 5 to get the diagnosis of OSA. Think about all those people out there with AHI's of 4 --- that means during an 8 hour sleep period they stopped breathing 32 times. They don't even get to try CPAP unless they pay OOP for a machine. How would your wife like that if she doesn't like your current AHI's?

BTW - have you got your answer ready for when the doc asks you why you weren't staying at 7?

ww · Post by ww » Tue Apr 29, 2008 10:25 pm

bdp522 wrote:
Does this mean that is unreasonable to expect apneas to be very close to zero each night?
Yes. Any AHI under 5 is considered normal. I can't imagine any doctor trying to get it lower. If your AHI is 5 or under during a sleep study you won't even be considered for xpap treatment.

Many spend months and even years trying for the numbers you got with the UMFF at a pressure of 10.5.

You found something that works. Now be happy with it!

Brenda

jules · Post by **jules** » Tue Apr 29, 2008 10:29 pm

AHI is apnea/hypoapnea index or a rate of sum of apneas and hypoapneas per hour on the machine. If during the night, say 8 hours, you have 12 apneas and 8 hypoapneas, you have an AI of 1.5, HI of 1.0 and AHI of 2.5.

The price online for a machine is not what the DME will bill insurance. They will probably bill 3 times that amount and have a contracted rate with the insurance for a certain %age of that. A bilevel machine will be billed the same as the bipap auto. It is now sounding like you are desiring only the bipap auto, not just a bilevel machine. Not all bilevel machines can adjust inhale and exhale pressures during the night.

If you are willing to buy the bipap auto OOP, then ask your primary doc for the script. If you are wanting to use insurance, then you got to play their games. There needs to be medical necessity documented.

Some sleep docs are willing to hear out patients and some aren't. Some are willing to accept patients adjusting machines and some will fire the patient for doing it.

Many of us wish we had as nice of AHI's as you have posted when we started. I have nights now with AHI closer to 9 sometimes followed by nights with AHI close to 1. I haven't seen but 1 AHI of 0.0 I think in almost 2 1/2 years on cpap/apap.