Hello everyone,

I got a call this evening about the result of my 1st sleep study, I was told it was very bad. I've been reading as much as I could in the past 4 hours on sleep apnea, I must say that I'm very sad about the result, but at the same time, it is very encouraging to have found such a wonderful and supportive group of people in this forum.

Results:
AHI 99 (Apnea 61, Hypopnea 38)
REM AHI 86
NREM AHI 101
RDI 99
Longest event 50s obstructive apnea - min SaO2 81%
Lowest O2 saturation 57% - 45s obstructive hypopnea

I've been scheduled to perform the 2nd test next week. However I'm really worry about what to expect and if this is the right way of treatment. I was actually refer to a pulmonologist by my family doctor due to excessive sleepiness and snoring. But so far, I've not met with this doctor yet, the only person that I've talked to was the technician administrating my first test. In the telephone conversation just now, I was told that I need to do the 2nd test asap and then the vendor will be sent to my home with the CPAP machine. I don't think this is the right way to do it, but I'm not sure what to expect.

My questions:
1) Should I demand to see the pulmonolist? can he really prescribe the treatment without even seeing me?
2) I understand that there are a few type of PAP machines, CPAP, BiLevelPAP, AutoPAP, AutoBiLevelPAP, and different people response differently to them. So during the 2nd sleep test, do the technician try all of them on me? Or it will be default to CPAP and the rest will be used only if I've complaint?
3) I also read that it is best to get the machine with data capability. Do I request this with the vendor that came to my home? I also read that I should get on with 'rent to own' type of arrangement. Does all DME has this? I think I should be calling my insurance company on this but would appreciate any advise you have on this.  
4) I really would want to cancel the appointment and take some time to find out what options do I have first. I don't really feel good about the center that I went to. But at the same time, I'm also worry that the situation will get more severe. If anyone has any good experience with Dr or sleep center around Chicago/Palatine area, I would really appreciate the recommendation (PM).
5) I will continue to learn more about interpreting the results, if you have any important observation about the results above or need more data, please comment.

I apologize to post a long list of questions in my first post. I will try my best to learn and hopefully I will be knowledgeable enough one day and help out any newbies out there in the future. Thanks in advance for any comments/advise/sharing that you provide.

Regards,
Mike

1) No. A prescription can be written without a consultation. Your treatment, though, is in the hands of the technicians administering and compiling the data. Everything you have written, regarding the process, seems relatively normal. Referral, sleep study, titration study, dme involvement.

2) You can expect to have CPAP and Bipap available. More than likely, you will be written a script for CPAP, however BiPap can be used at the technicians discretion (or if protocols allow for it).

3) Someone else will clarify this. A few people here seem to be in their DME office daily.

4) Its your call on whether or not to wait for treatment. If you are suspicious of the lab, then it may be best to cancel. What, exactly, raises your eyebrow about it?

Hi Mike...glad you found us too...means you will most likely do better with your treatment.
Mike, Your apnea is severe....do not cancel the appointment...what you have experienced is normal and the gold standard treatment is xPAP (x=whatever pap you get).  The Dr will read your titration study and set the pressure amount needed...though the tech determines that through the titration.   The Dr can override it and up or lower the pressure just a bit.

It would be in your best interest to see a sleep specialist...and this can be done once you get going on the xPAP...you do not 'have' to see one before.

Quote:

1) Should I demand to see the pulmonolist? can he really prescribe the treatment without even seeing me?

Yes, the Dr. is seeing your study.  Shoot, some sleep centers have Dr.s in India reading these studies.

Quote:

2) I understand that there are a few type of PAP machines, CPAP, BiLevelPAP, AutoPAP, AutoBiLevelPAP, and different people response differently to them. So during the 2nd sleep test, do the technician try all of them on me? Or it will be default to CPAP and the rest will be used only if I've complaint?

Ask the tech this.  You will most likely be started on the CPAP and during the study, if the tech deems neccesary they will try you on the BiLevel.  If a titrated pressure can not be fully determined during the study they may put you on an APAP...or if your pressure needs have a wide variant to them.

Quote:

3) I also read that it is best to get the machine with data capability. Do I request this with the vendor that came to my home? I also read that I should get on with 'rent to own' type of arrangement. Does all DME has this? I think I should be calling my insurance company on this but would appreciate any advise you have on this.

First call your insurance and see which vendors they are contracted with...you most likely will not have to use the one that the Dr sets you up with if you do not want to.  You can call the vendors themselves and se if they accept your insurance and the plan you have within your insurance..and you can tell the dr which DME (vendor) you want to use.

Second call the vendor and diplomatically and nicely let them know which machine you prefer...YOu want to be able to read your AHI (Apnea/Hypopnea Index) and leak rate daily via of the LCD screen.  You may not get any resistance...if you do, it is usually BS.  A fully data and a non data are billed to your insurance using the same insurance codes.

The rental: again, ask this to your insurance..due to some people not sticking with treatment many insurance do this as a rental the first few months to see if you are compliant then buy it outright...my insurance is BC/BS my policy dictates that is must be a 10 month rental prior to insurance paying for it in full then I own it.

Quote:

4) I really would want to cancel the appointment and take some time to find out what options do I have first. I don't really feel good about the center that I went to. But at the same time, I'm also worry that the situation will get more severe. If anyone has any good experience with Dr or sleep center around Chicago/Palatine area, I would really appreciate the recommendation (PM).

There really are no good options for severe apnea other than using the xPAP.  From what I am reading you do not feel good about the center due to not meeting with the Dr first.  However, this is the way it works for the most part.  Again, I would not suggest canceling...get your self started on the teatment...if you feel yo need a different Dr after that then you can go to a different one.  The studies can go with you since you have the right to a copy of the full report which is the dr's dictation/summary and about 5 to 6 pages of the study...for each of the studies.

Quote:

5) I will continue to learn more about interpreting the results, if you have any important observation about the results above or need more data, please comment

Are all your apneas in this diagnostic study obstructive?  Make sure you get the full report which will tell you all this...plus did you have many leg movements?  There are other things the full report will tell you (sleep stages and % in those stages etc) if you are curious about them and want a good break down post that info and someone will most likely jump in and help you with it.

Quote:

I apologize to post a long list of questions in my first post. I will try my best to learn and hopefully I will be knowledgeable enough one day and help out any newbies out there in the future. Thanks in advance for any comments/advise/sharing that you provide.

Shoot, this is not a long list...and this is what this site is all about.  No matter how much knowledge you do or do not gain...but you will gain it because it only helps you do better...but even posting about your experience, sharing with others or just an "I hear you' to other posters can be more than helpful.

Keep us posted Mike...and asking tons of questions is the best way to go about this....congrats for learning about your SA...the best advice I can give is that this is one condition that you have to understand...and be a self advocate with..the more you understand the better you can advocate and the better you can adjust to treatment...for me, I took to it the first time and have never let go...starting 5 years ago.


_________________

CLICK HERE FOR MORE INFO~ http://tinyurl.com/69q52a

BiPAP Auto M 13/8 Mirage Nasal Swift. 20 years+ undx'd. RLS/PLMD, Hypersomnia & more.

OOOPs...one more teannie weannie thing.  Ask the tech to clearly note that you would like the Dr to write the mask script as "Patient's Choice"  this way you can try on several masks to determine if one that was not available for you at the study may work better...if the one during the study workd good and you have not complaints..I would stick with that one.

Also again with the tech..same thing for notation..that you want a fully data capable machine..hopefully by doing this you will not have the possibility of meeting resistance for it thorugh the vendor/DME...again, this may not happen but just in case.


_________________

CLICK HERE FOR MORE INFO~ http://tinyurl.com/69q52a

BiPAP Auto M 13/8 Mirage Nasal Swift. 20 years+ undx'd. RLS/PLMD, Hypersomnia & more.

Hi Mike-You have come to the right place for support and information.  First of all, I am sorry to hear that your apnea is that severe-I can feel your pain and fear.  I am so glad they are doing a second test, moving on with things quickly, and that you have a pulmonologist.  I suffered at least 5 years prior to DX in 2/08, and I just found out I should have had a pulmonologist!  The wait for my CPAP was not too bad, because I kept after them- I had to pick it up, got a defective machine, and had to get another.  

I think you absolutely should see a pulmonologist-a huge component to sleep apnea is 'sleep disordered breathing'  Sleep apnea is complex.

I am fairly new, so I am not sure about the type of machine-I believe they figure that out in the lab, and the sleep doctor or pulmonologist would know which machine would be right for you.

Absolutely get a machine with data capability-especially given the severity of your apnea.  

Continue learning all you can so that YOU  have as much control over your own health as possible.

Please do not ever apologize for a long post-you need the help and support-I have learned it is very difficult to get it anywhere else!

I did fantastic the first 2-3 months, then things went downhill when I moved to another  elevation-I have had many challenges, but CPAP has enabled me to sleep some.  I slept real well when things were right. I think I need a titration, and once I get the proper titration, I expect to do really well, like I did when I first started!  I think you need to get on the right machine first, and work out the details later.  Right now, you need to get stabilized and have those apneas stopped.  Keep us posted-we want to help you and encourage you. Lantern

Mike, there are worse treatments than having to sleep with a hose for the rest of your life.  CPAP is giving me the opportunity to drop some weight which was almost impossible before CPAP.  It might not get me off the hose, but it could reduce my pressure.

Your oxygen levels are dangerously low.  You shouldn't put anything off.  Good luck with your therapy.


_________________
REMStar Pro M w/ c-flex and heated humidifier
ResMed Swift LT nasal pillow
Encore View Software
12 cm H20, 13 cm H20
CPAP start date: June 4, 2008

Mike, I've only been using CPAP for 4 weeks, but have been quite successful so far.  My experience is somewhat similar to yours.  Referred to sleep clinic by my internist after all avenues to excessive fatigue, weight gain, and morning headache had been explored.  I saw a pulmonologist at the clinic prior to spending the first night there.  His "exam" consisted of several questions and checking weight, BP, and chest (stethoscope).  Something about the doctor referring me to his own clinic, and then the clinic confirming I have apnea (what a surprise--not) and sending me down the hall to the DME seemed a little contrived, so I really understand your response to your own experience.  But I trust my internist and so I have to trust this business too.

I was diagnosed with moderate-to-severe apnea (60 episodes/hr. during deepest sleep) and alarmingly low oxygen levels (72%).  The doctor called to give me my test results and expressed special concern about the oxyen level.  I was set up for a second night at the clinic.  I selected the nasal mask that felt most comfortable to me but couldn't keep my mouth closed.  The tech put a chin strap on me during the night, which was not totally effective, so I was prescribed a full-face mask.

I was sold a CPAP machine.  No selection; it was doctor's prescription.  But now that I'm into this process I'm glad he prescribed a very good machine that has a telephone modem for data collection.  I tried a few masks and selected the one strongly recommended by the DME's Certified Respiratory Therapist who explained the whole business to me.  The mask is not as comfortable as others I tried, but my pressure it so high I have to have one that practically BOLTS to my face.  Still getting used to that.

When I left the clinic after the second night, I was given an appointment with the pulmonologist for 6-7 weeks hence, so that I could have enough time to get with the program before seeing him again.

I'm not all the way to perfection yet, but I'm pleasantly surprised at how well I've adjusted.  I did NOT feel better (in fact, worse) the first two weeks.  But I turned some sort of corner and am feeling energetic enough to start walking regularly and I'm eating less.  No siginificant weight loss yet, but I expect that will come.

Is your experience atypical?  Probably not.  I felt your same desire to see a specialist, but my contact with the pulmonologist was pretty superficial.  I expect if I were having serious trouble I would get more attention.  But I haven't needed any because I think it's been a pretty-much model experience to me.  I just regret 15 years of oxygen-deprivation morning headches that I attributed to allergies.

I too have BC/BS, but they didn't balk at my purchase of the CPAP, so that must depend upon the type policy you have.  DO talk to your insurance company first.  I've had some trouble with BC/BS not approving my particular clinic, but my internist insisted on this one and BC/BS is coming around.  I'm no longer concerned about that aspect.

Good luck and DO get started.  Fine tuning can come afterward but you have to start, first.

jettstream


_________________
REMstar Plus M CPAP Machine
w/C-flex, Ramp, & Heated Humidifier
ResMed Mirage Quattro Full-face Mask
Pressure setting 17
Began therapy 18 July 2008

Mike, I've only been using CPAP for 4 weeks, but have been quite successful so far.  My experience is somewhat similar to yours.  Referred to sleep clinic by my internist after all avenues to excessive fatigue, weight gain, and morning headache had been explored.  I saw a pulmonologist at the clinic prior to spending the first night there.  His "exam" consisted of several questions and checking weight, BP, and chest (stethoscope).  Something about the doctor referring me to his own clinic, and then the clinic confirming I have apnea (what a surprise--not) and sending me down the hall to the DME seemed a little contrived, so I really understand your response to your own experience.  But I trust my internist and so I have to trust this business too.

I was diagnosed with moderate-to-severe apnea (60 episodes/hr. during deepest sleep) and alarmingly low oxygen levels (72%).  The doctor called to give me my test results and expressed special concern about the oxyen level.  I was set up for a second night at the clinic.  I selected the nasal mask that felt most comfortable to me but couldn't keep my mouth closed.  The tech put a chin strap on me during the night, which was not totally effective, so I was prescribed a full-face mask.

I was sold a CPAP machine.  No selection; it was doctor's prescription.  But now that I'm into this process I'm glad he prescribed a very good machine that has a telephone modem for data collection.  I tried a few masks and selected the one strongly recommended by the DME's Certified Respiratory Therapist who explained the whole business to me.  The mask is not as comfortable as others I tried, but my pressure it so high I have to have one that practically BOLTS to my face.  Still getting used to that.

When I left the clinic after the second night, I was given an appointment with the pulmonologist for 6-7 weeks hence, so that I could have enough time to get with the program before seeing him again.

I'm not all the way to perfection yet, but I'm pleasantly surprised at how well I've adjusted.  I did NOT feel better (in fact, worse) the first two weeks.  But I turned some sort of corner and am feeling energetic enough to start walking regularly and I'm eating less.  No siginificant weight loss yet, but I expect that will come.

Is your experience atypical?  Probably not.  I felt your same desire to see a specialist, but my contact with the pulmonologist was pretty superficial.  I expect if I were having serious trouble I would get more attention.  But I haven't needed any because I think it's been a pretty-much model experience for me.  I just regret 15 years of oxygen-deprivation morning headches that I attributed to allergies.

I too have BC/BS, but they didn't balk at my purchase of the CPAP, so that must depend upon the type policy you have.  DO talk to your insurance company first.  I've had some trouble with BC/BS not approving my particular clinic, but my internist insisted on this one and BC/BS is coming around.  I'm no longer concerned about that aspect.

Good luck and DO get started.  Fine tuning can come afterward but you have to start, first.

jettstream


_________________
REMstar Plus M CPAP Machine
w/C-flex, Ramp, & Heated Humidifier
ResMed Mirage Quattro Full-face Mask
Pressure setting 17
Began therapy 18 July 2008

Thanks Mrs Rip Van Winkle, RAM_Sleep, lantern4life, Yawn & jettstream for your advise, encouragement and sharing.

Here is a quick update to my situation. Initially I was reluctant to go back to the same center. It was due to my encountered with the technician that done my first sleep study, for unknown reason, in the casual chat before the test, he told me he just had 2 hours of sleep and had to stay awake whole night for my test and I'm his 2nd 'patient' and some of his background info (that I do not need to know) that make me feel uneasy. I tried to look for other sleep center, but the earliest appointment that I can get is 2.5 weeks from today.

Reading the advise from this forum (that I shouldn't putting it off, start first and fine tune later..), and realizing that I had a really bad apnea, I decided to go ahead with the current center. I took a day off and show up in the center yesterday to confirm the insurance info, and to my surprise the Dr (that never wanted to see me according the nurse) was actually there anf available and I took the opportunity to talk to him. He explained the report to me and make me feel much comfortable. I also found out that a different technician is going to perform my titration test. That actually make me feel very much comfortable compared to a few days back. I'm going to carry out the test on Mon.

At the end, he even showed me the machine and told me that was the most common machine that he prescribed, showing me smartcard, humidifier etc. I wrote down the machine name/model, it was actually a REMstar Plus M series. Reading from other post afterwards, it seems that this one is actually not fully data capable even though it has a smartcard. The one with full data capability should be the Pro instead of Plus. After my test, I would ask him (nicely) that I would like to take advantage of the full data capability of the Pro version and ask him to prescribe it (found this on website:  REMstar® Pro M Series with C-Flex).

Looking at the Respironics website, there are a number of machines listed under Bi-Level Therapy below:
BiPAP® Auto M Series with Bi-Flex®
BiPAP® Plus M Series with Bi-Flex®
BiPAP® autoSV™
 
In case I need BiLevel, which one of the above actually has full data capability?

Since my lowest SaO2 is very low (55%), should I be worry about measuring it at home?

Is there any other things that a newbie need to be aware of in the titration test?

Again, I'm really grateful to have found this forum in starting my own journey in SA treatment.

Thank you.

Regards,
Mike

Quote:

Looking at the Respironics website, there are a number of machines listed under Bi-Level Therapy below:
BiPAP® Auto M Series with Bi-Flex®
BiPAP® Plus M Series with Bi-Flex®
BiPAP® autoSV™
  
In case I need BiLevel, which one of the above actually has full data capability?

Since my lowest SaO2 is very low (55%), should I be worry about measuring it at home?

Is there any other things that a newbie need to be aware of in the titration test?

Again, I'm really grateful to have found this forum in starting my own journey in SA treatment.

If you need a bilevel and you have to go with Resperonics..and if you do not have central/mixed apnea...  The BiPAP Auto M Series with BiFlex would be the way to go (I also use it).  This has technology with the way the pressure is delivered, it is more natural to breath.  The chinging of the IPAP and EPAP pressure follows your natural rhythm of breathing verses you having to follow it (using simple terms here).  The Dr may feel you do not need an Auto and may be reluctant to script it.  I told my Dr that the machine can be set as and auto, a cpap, a bipap or an auto bipap....  and that this will be the most comfortable for me to use...so he OK'd it.  Dr's do not know too much about the various machines.  The one you saw in his office is most likely there because the sales rep told him that is the one that most insurance companies don't balk at....it is a basic machine.  Still will do the job, but basic.  You need something that will show your AHI and leak rates via an LCD screen.

You may find that your O2 returns to an acceptable range once on xPAP.  This will be determined at your titration study..but yes, keep a check on it in the future.  There may not be any problems with it for the next year or more but it could worsen in time.

The titration test..is the same as the diagnostic test only this time you wear the mask and use the machine.  I can not think of anything that you would need to be aware of.  Just between now and then, continue to learn the masks and the machines.  Search out Crohnietoo posts, she is the machine queen.

Keep us posted and GOOD LUCK Monday!...

BTW, glad you are having more faith in the Dr and the Lab....my last titration the tech was a little twit...I ended up having to tell him that I was probably wearing the mask before he was born....a lot of miscommunication due to his being new and having 'new found knowledge'...he made it through the study though


_________________

CLICK HERE FOR MORE INFO~ http://tinyurl.com/69q52a

BiPAP Auto M 13/8 Mirage Nasal Swift. 20 years+ undx'd. RLS/PLMD, Hypersomnia & more.