Aboard the OSA Express

Hello to all.

I’ve spent a few days reading the forum, after finding it using an internet search for “CPAP Forums”.

Super information source, and obviously a large number of caring individuals, willing to give of their time and experience to offer a helping hand to those who now have a ticket aboard the “OSA Express”, but don’t know how to get to “GoodSleep, USA”.

Let me tell you a little about myself and my experiences so far:

Background:

My wife has been telling me for a number of years that I snored loudly (she went to earplugs as the solution to getting some sleep herself), and that I sometimes stopped breathing for short periods, and when I did, my lips turned blue.

My male “bluster and braggadocio” gene ensured that I didn’t pay proper attention to her. A few months ago, she mentioned the issue in front of my Doctor, and he set me up with a sleep test. It was right before the end of year holidays, so I used the "I’ll go after the holidays" excuse to delay going for the sleep test.

Mid-January, my Doctor, during a call to give me some bad news, as in “You have type II Diabetes”, then said “The sleep clinic called ….. why haven’t you taken that sleep test yet?”

After telling the wife about the Doctor’s question on taking the sleep test (and getting the “look”), I girded my loins and went in for the initial, and follow-on sleep tests. I had the technician take a picture of me when I was “wired up” for the second sleep test because my granddaughter wanted to know what it was all about.

Then What Happened (a sequence of events):

1. A call from the sleep clinic that they had “provided information to a supplier", and that the supplier would be calling me about supplying the “necessary” CPAP equipment.

2. A call from the DME representative wanting to know when I could “come in” for a mask fitting session, and that once that was done, she would visit me, deliver “the equipment” I needed (she indicated it was a CPAP machine, a mask, hose, humidifier, and a smart card), and set it up/show me how to use it.

I asked where she was (about 30 miles away), and then, being an old Logistics Manager, I began asking questions such as “What is the make/model number of the equipment, mask, humifier, smartcard, etc. She provided some minimal information (it was an Elite S8 with Smart Card, but it was on order, and she didn’t know what make/model mask I would get until after the mask fitting).

I asked her how she had selected that model (expecting some kind of at least psuedo-medical/technical answer of justification), and got “I” don’t make that decision, “They” (identifying her company vice the sleep clinic – after pressing her on it) made the selection.

Then, she told me that she was new, and a customer/patient had never asked her any such questions before, but she would get me “every answer” I needed and call me back. I proposed giving her my email (since I am hard of hearing, and that would be easier for me than writing down things over the phone), and then she could provide all the details, and anything else she wanted to add in her email.

Her response was “I have a computer, but my email isn’t hooked up yet, so she couldn’t do that, but she would call her boss (in a town 100 miles away, in the next state), and call me back with the answers.

Well, by now, my internal “red flag alarm” began beeping loudly. I told her thanks, and that I would await her call back.

3. Got a call back from the DME rep, asking if I wanted to press on with the mask fitting test, only now, she was apparently willing to drive to my home, and bring “a number of sizes and models” since she had “received some shipments that had been on order”. In the time between the calls, I had been doing searches on the ResMed Elite 8 and other equipment, manufacturers, etc., as well as trying to figure out who the players were in this “dance of the CPAP” activity. So I once again put on my old Loggie Manager’s hat and started asking questions like: “Is this equipment a rental? Who owns it, and when? Is there a monthly rental fee? Who pays it? Do I have to pay a part of the rental fee along with the Insurance Co? and on and on. (Hey, she promised to get me all the answers, eh? ).

After some circling around, we got down to this: She didn’t know the answers to any of those questions, but did give me her boss’ name and telephone # in that city far away. She was new, everything would be ok if I would just let her come by and do the mask fitting, provide user training, accept the equipment, and sign on the dotted line. Also, she got answers to my previous questions, but forgot where she put the paper she wrote them down on, but she was pretty sure she remembered the answers, mostly anyway.

My internal alarm was raised a few decibels, and I told her that I really needed to understand the process, associated costs, and each party’s responsibilities better before I would be prepared to sign on the dotted line, and accept any delivery. At this point I was assured that my co-pay for the equipment at delivery was “only” $68.18. I thanked her, and told her I would get back with her, perhaps early the next week, after I had a chance to understand everything about the process and the players later.

That evening I found this forum and started reading. Talk about trying to get a sip of water from a full-on Fire Hose! But I think I’ve passed over the “technology & lingo peak” and generally understand what’s going on (thanks to all of you here who have provided that data to the forum).

4. The next day the DME rep called back (didn’t wait for me to call her the following week) and asked if I wanted her to deliver the equipment, fit the mask, and sign me up! When I explained to her that I now better understood some things, and that I would still require more time before proceeding down any path with her and her company, I got this: “Well, OK, but I just wanted you to know that we have other people in the area who also are needing this equipment, and I may have to deliver it to them to satisfy their requirements, and if so, when you call back, we may not have the equipment, and you would have to wait until we re-ordered and received more equipment, and we don’t want to leave you without equipment.”

Now, the last time I heard that pitch was on a car lot, by a guy with white shoes and belt, plaid pants, a vertically striped shirt, lots of finger rings and an oily smile! Needless to say, my internal alarm was really blaring now!

I told the rep thanks for the concern, and that she should certainly press on and give the equipment to that needy patient as soon as she could! (I don’t think she was real happy with me).

5. Decided to stop acting like someone standing outside a window and looking in, seeing people doing things without consulting first (and honestly) with the person who would live with the results (me!).

Based on what I learned on this forum, and from the many useful links provided, I have now contacted the sleep test clinic and got a copy of my two test results (I’m trying to decipher the results now), as well as a new prescription (asked for and got a more open content type prescription).

Will be contacting my Insurance provider next week about limits/compensation in acquiring the equipment on line.

Will be providing test info here to the forum and asking for help in understanding the results, and how they extrapolate into the best equipment set for me.

Hope this isn’t too long-winded, but wanted to add my story, dissatisfactions, and hopefully ultimate solution to the mix here at this forum.

Note. I also need to find an equivalent forum about Diabetes II, so if anyone here has any suggestions about that, I appreciate any help you can give.

NetYardDog

NetYardDog wrote:
After telling the wife about the Doctor’s question on taking the sleep test (and getting the “look”),

I know that "look"


Well, by now, my internal “red flag alarm” began beeping loudly. I told her thanks, and that I would await her call back.

I know that alarm sound.

talk about trying to get a sip of water from a full-on Fire Hose!

....ain't that the truth.


Now, the last time I heard that pitch was on a car lot, by a guy with white shoes and belt, plaid pants, a vertically striped shirt, lots of finger rings and an oily smile! Needless to say, my internal alarm was really blaring now!


If I can get that in green, will you buy today???

I told the rep thanks for the concern, and that she should certainly press on and give the equipment to that needy patient as soon as she could! (I don’t think she was real happy with me).

...you walked.....oooooo, they don't like that....no control.

NetYardDog

Great story! Too bad most of us have to live it.
You certainly got the full Monty.

Welcome! All the best as you new life begins.

Hi, you can post the results of your test as a summary (though it's probably already done - the part listing AHI, leak rates, 02 desaturation and times, etc. etc. and we'd be happy to try and make sense of it for you if you can scan it to a reasonable size to post here.

NetYardDog,

http://community.compuserve.com/n/pfx/f ... s-diabetes

is where I learned much of what I know about diabetes. Very helpful and friendly people -- one of the older Forums on the Net. (going back BEFORE most net Forums, when access was paid by the minute!)

You"ll need a screen name and password.

Kiralynx wrote:NetYardDog,

is where I learned much of what I know about diabetes. Very helpful and friendly people -- one of the older Forums on the Net. (going back BEFORE most net Forums, when access was paid by the minute!)

You"ll need a screen name and password.

---------------
Wow, Compuserve. You're right, that was a while back wasn't it? (Thinking back to his Commodore 64, 1st computer days).

Thanks for the link. Took a quick look, and will signup later.

NetYardDog wrote:Wow, Compuserve. You're right, that was a while back wasn't it? (Thinking back to his Commodore 64, 1st computer days).

Thanks for the link. Took a quick look, and will signup later.

Yeah, I've been on CServe since 1987, and active in the Forae there since 1992. I was using an Osborne 1. Although there aren't as many active members there as there once were, the ones who are there are very knowledgeable and friendly. <g> In fact, it was one of the folks THERE, who pointed me HERE for CPAP information!

Julie wrote:Hi, you can post the results of your test as a summary (though it's probably already done - the part listing AHI, leak rates, 02 desaturation and times, etc. etc. and we'd be happy to try and make sense of it for you if you can scan it to a reasonable size to post here.

----------------------

Thanks Julie.

I did an OCR scan of the first study (Polysomnographry) report they sent me. I'm posting it below, and will post the 2nd study (CPAP Titration) report they sent me after I finish OCRing it and removing identifying data. Maybe seeing both will help some future forum member in understanding what such a report looks like (although it appears to me that I got the abbreviated versions of the reports). Here goes:

----------------------------------------------------------------(Sleep Diagnostic Clinic’s Name)-------------------------------------------------------------------



Patient Name: (Patient’s Name)
Type of Study: POLYSOMNOGRAPHY
Date of Study: (Study Date)
Referring Physician: (Doctor’s Name)
Demographics: HEIGHT: 5'11" WEIGHT: 253 AGE: 62 SEX: M
System: Alice 5 20+ channel montage.
Technician: (Technician’s Name)

Indications: EDS, Snoring
Epworth score: 6 Hypertension: Y Cardiac Disease: N Pulmonary Disease: N

This patient had severe Obstructive Sleep Apnea with a total AHI of 27.2 and a REM AHI of 50.3. There were a total of 165 respiratory events, with the longest lasting 44 seconds. O2 desaturations were seen down to 76%. O2 desaturations were between 76% and 90% for 24.0 minutes. There were 0 Periodic Limb Movements of Sleep seen for a PLM index of 0. EKG rhythm was unremarkable. Sleep onset was early at 5.0 minutes, REM latency was early at 55, and sleep efficiency was 94%. Sleep staging, abnormal sleep architecture with slow wave sleep rebound.

Axis A: OSA.

Axis B: Polysomnography.

Axis C: Other medical disorders per H&P.

Recommendation:
CPAP Titration and weight loss.
Follow up in clinic for test results.



(Doctor’s Signature)
______________________________
(Doctor’s Name, Title)


---------------------------------------------------------------------------[Cover Page]---------------------------------------------------------------------------------


-----------------------------------------------------------------(Sleep Diagnostic Clinic’s Name)------------------------------------------------------------------



POLYSOMNOGRAPHY REPORT


Patient Name: (Patient’s Name)
Study Date: (Study Date)
HEIGHT: 5'11" WEIGHT: 253 AGE: 62 SEX: M
Referring Physician: (Doctor’s Name)

PARAMETERS RECORDED:
FRONTAL EEG, CENTRAL EEG, OCCIPITAL EEG, EOG, EMG (CHIN AND LEG), 3 LEAD EKG NASAL PRESSURE TRANSDUCER
SNORING MICROPHONE, AIR FLOW, RESPIRATORY EFFORT (ABDOMINAL AND THORACIC), OXYGEN SATURATION, BODY POSITION.

SLEEP STAGING DATA:
LIGHTS OUT: 11:01 pm LIGHTS ON: 5:30 am
SLEEP ONSET: 5.0 TIME IN BED: 389.0
REM LATENCY (FROM SLEEP ONSET): 55.0
TOTAL SLEEP TIME: 364.5 MIN SLEEP EFFICIENCY: 94

SLEEP STAGE PERCENTAGES:
N1: 3 (N-5%) TIME: 9.0 N2: 44 (N-55%) TIME: 161.0
N3: 32 (N-18%) TIME: 117.0 REM: 21 (N-22%) TIME: 77.5

SUMMARY OF SLEEP STAGING DATA: Good sleep efficiency with early REM onset and massive slow wave sleep rebound.

AROUSAL EVENTS:
NUMBER OF AROUSALS: 190
AROUSAL INDEX: 31.2

RESPIRATORY EVENTS SUMMARY:
NUMBER OF OBSTRUCTIVE APNEAS: 59
NUMBER OF OBSTRUCTIVE HYPOPNEAS: 103
NUMBER OF MIXED APNEAS: 2
NUMBER OF CENTRAL APNEAS: 1
LONGEST EVENTS: 44 seconds
TOTAL AHI (APNEA-HYPOPNEA INDEX): 27.2
REM AHI (APNEA-HYPOPNEA INDEX): 50.3
TOTAL NUMBER OF EVENTS: 165


--------------------------------------------------------------------------[Report – Page 1 of 2]------------------------------------------------------------------------

------------------------------------------------------------------(Sleep Diagnostic Clinic’s Name)------------------------------------------------------------------



POLYSOMNOGRAPHY REPORT


Patient Name: (Patient’s Name)
Date of Study: (Study Date)

SUMMARY OF RESPIRATORY EVENT DATA: Severe OSA seen far worse in REM with severe snoring noted.

OXIMETRY DATA:
AVERAGE SAO2: REM: 91 NON-REM: 94
AWAKE: 94 LOW SAO2: 76%

DESATURATIONS RANGE:
91-100%: 365.0 MINUTES
81-90%:23.0 MINUTES
71-80%: 1.0 MINUTES
61-70%:0 MINUTES
51-60%: 0 MINUTES
BELOW 50%: 0 MINUTES

OCCURRENCE OF CHEYNE STOKES BREATHING: No

SUMMARY OF OXIMETRY DATA: Severe desaturations seen.

CARDIAC DATA:
MEAN HEART RATE: WAKE: 93 NREM: 53 REM: 53

SUMMARY OF CARDIAC DATA: ECG is unremarkable.

MISCELLANEOUS DATA: Unable to distinguish true PLMS due to repetitive arousals.

PERIODIC LIMB MOVEMENTS: 0
PERIODIC LIMB MOVEMENT INDEX: 0
AROUSAL INDEX: 0

TECHNOLOGIST IMPRESSION: Severe OSA seen far worse in REM with severe snoring noted.



(Clinic Technician’s Signature)
______________________________
(Clinic Technician’s Name, Title)



--------------------------------------------------------------------------[Report – Page 2 of 2]------------------------------------------------------------------------

Here's a few more links.

Den


http://www.diabetes.org/home.jsp

http://community.diabetes.org/n/forumIn ... g=adaindex

http://community.diabetes.org/n/pfx/for ... g=adatype2


http://www.dlife.com/

http://www.dlife.com/diabetes-forum/

http://www.dlife.com/diabetes-forum/vie ... ae3b8d2f5e

I did an OCR scan of the first study (Polysomnographry) report they sent me. I'm posting it below, and will post the 2nd study (CPAP Titration) report they sent me after I finish OCRing it and removing identifying data. Maybe seeing both will help some future forum member in understanding what such a report looks like (although it appears to me that I got the abbreviated versions of the reports). Here goes:

++++++++++++++++
Here's the second study (CPAP Titration):

-----------------------------------------------------------------(Sleep Diagnostic Clinic’s Name)--------------------------------------------------------------------



Patient Name: (Patient’s Name)
Type of Study: CPAP Titration
Date of Study: (Study Date)
Referring Physician: (Doctor’s Name)
Demographics: HEIGHT: 5'11" WEIGHT: 253 AGE: 62 SEX: M
System: Alice 5 20+ channel montage.
Technician: (Technician’s Name)

Indications: EDS, Snoring
Epworth score: 6 Hypertension: Y Cardiac Disease: N Pulmonary Disease: N

This patient was tried at multiple settings of CPAP, including 4, 6, 8, 10, 12 cm H2O. The patient had a good response with CPAP at 8 cm H2O with an AHI of 3.2, good sleep efficiency, and resolution of snoring. Good REM was seen at this setting. EKG was occasional PAC's. There were 325 Periodic Limb Movements of Sleep seen for a PLM index of 51.1.


Axis A: OSA, PLMS.

Axis B: CPAP Titration.

Axis C: Other medical disorders per H&P.

Recommendation:
NCPAP at 8 cm H2O, to be worn nightly.
Weight loss.
May need to consider Requip or Mirapex for PLMS if symptoms persist.
Follow up in clinic for test results.



(Doctor’s Signature)
______________________________
(Doctor’s Name, Title)


-------------------------------------------------------------------------------[Cover Page]-------------------------------------------------------------------------------

--------------------------------------------------------------------(Sleep Diagnostic Clinic’s Name)-----------------------------------------------------------------



CPAP TITRATION REPORT


Patient Name: (Patient’s Name)
Study Date: (Study Date)
HEIGHT: 5'11" WEIGHT: 253 AGE: 62 SEX: M
Referring Physician: (Doctor’s Name)

PARAMETERS RECORDED
FRONTAL EEG, CENTRAL EEG, OCCIPITAL EEG, EOG, EMG (CHIN AND LEG),
3 LEAD EKG NASAL PRESSURE TRANSDUCER
SNORING MICROPHONE, AIR FLOW, RESPIRATORY EFFORT (ABDOMINAL AND
THORACIC), OXYGEN SATURATION, BODY POSITION, CPAP PRESSURE READING.

SLEEP STAGING DATA:
LIGHTS OUT: 9:38pm LIGHTS ON: 4:42am
SLEEP ONSET: 23.5 TIME IN BED: 424.0 MINUTES
REM LATENCY (FROM SLEEP ONSET): 75.0
TOTAL SLEEP TIME: 381.5 MINUTES SLEEP EFFICIENCY: 90%

SLEEP STAGE PERCENTAGES:
N1: 2 (N-5%) TIME: 8.0 N2: 57 (N-55%) TIME: 217.5
N3: 16 (N-18%) TIME: 60.0 REM: 25 (N-22%) TIME: 96.0

SUMMARY OF SLEEP STAGING DATA: Good sleep efficiency with REM rebound.

AROUSAL EVENTS:
NUMBER OF AROUSALS: 19
AROUSAL INDEX: 2.9

RESPIRATORY EVENTS SUMMARY:
NUMBER OF OBSTRUCTIVE APNEAS: 0
NUMBER OF OBSTRUCTIVE HYPOPNEAS: 7
NUMBER OF MIXED APNEAS: 0
NUMBER OF CENTRAL APNEAS: 1
TOTAL AHI (APNEA-HYPOPNEA INDEX): 1.3
REM AHI (APNEA-HYPOPNEA INDEX): 5.0
LONGEST EVENTS: 66 sec.
TOTAL NUMBER OF EVENTS: 8




-----------------------------------------------------------------------[Report – Page 1 of 3]---------------------------------------------------------------------------



CPAP TITRATION REPORT


Patient Name: (Patient’s Name)
Date of Study: (Study Date)

SUMMARY OF RESPIRATORY EVENT DATA: Severe OSA; Patient well controlled at 12cm in REM.

OXIMETRY DATA:
AVERAGE SAO2: REM: 95 NON-REM: 96
AWAKE: 96 LOW SAO2: 86%

DESATURATIONS RANGE:
91-100%: 423.5 MINUTES
81-90%: 0.5 MINUTES
71-80%: 1.0 MINUTES
61-70%: 0 MINUTES
51-60%: 0 MINUTES
BELOW 50%: 0 MINUTES

OCCURRENCE OF CHEYNE STOKES BREATHING: No

SUMMARY OF OXIMETRY DATA: No significant desaturations seen.

CARDIAC DATA:
MEAN HEART RATE: WAKE: 60 NREM: 54 REM: 53

SUMMARY OF CARDIAC DATA: ECG is occasional PAC's.

MISCELLANEOUS DATA: Severe PLMS seen.

PERIODIC LIMB MOVEMENTS: 325
PERIODIC LIMB MOVEMENT INDEX: 51.1
AROUSAL INDEX: 1.3

TECHNOLOGIST IMPRESSION: Severe OSA; Patient well controlled at 12cm in REM and in all body positions. Patient may require pharmacological treatment of severe PLMS.



(Clinic Technician’s Signature)
______________________________
(Clinic Technician’s Name, Title)



-----------------------------------------------------------------------------[Report – Page 2 of 3]----------------------------------------------------------------------


Patient Name: (Patient’s Name)
Date of Study: (Study Date)


CPAP TITRATION DATA TABLE

---CPAP----------------------REM--------NREM-------CENTRAL-----OBSTR--------MIXED
SETTINGS-----TIME-------TIME--------TIME--------APNEAS ------APNEA-------APNEAS------HYPOPNEAS------SNORING-------AM
-----4------------9.6----------0.0----------9.6-------------0--------------0---------------0-----------------0------------MODERATE------0.0
-----6-----------18.5----------0.0---------18.5------------0--------------0---------------0-----------------0----------------MILD----------0.0
-----8-----------98.5---------18.5---------75.5------------0--------------0---------------0----------------5------------------NO-----------3.2
----10-----------76.1---------18.0---------52.0-----------1---------------0---------------0----------------1------------------NO----------1.7
----12----------193.1---------59.5--------129.0----------0---------------0---------------0----------------1------------------NO----------0.3



-------------------------------------------------------------------------[Report – Page 3 of 3]------------------------------------------------------------------------

Wulfman wrote:Here's a few more links.

Den

Thanks mucho Den. I've got a lot of research/learning to do on the subject.

NetYardDog