How did you end up with the XPap you have?

[Slinky]

You are doing GREAT so far! You're a "quick study" and were able to put things in perspective very well.

Personally, I would strongly recommend that you go thru w/the in-lab titration study. Be sure to tell them right up front that you are going to want not only a copy of the doctor's dictated results (1-2 pages each) but also a copy of the full scored data summary report w/condensed graphs (5+ pages each) from BOTH your in-lab sleep evaluation AND your in-lab titration PLUS you will want the equipment order (script).

Call your insurance company and ask them what local DME CPAP suppliers they are contracted with. Hopefully, you will have the option of more than one. Then go ahead and "shop" your options and see what type of xPAP they are willing to provide, how lenient their mask policy is, how comfortable you are w/the info they provide and their RT (respiratory therapist) will be to work with.

There ARE some GOOD local DME suppliers out there. Hopefully you will find one of them that is contracted w/your insurance and, really, I think first time PAPpers are better off working with a local DME supplier IF they have access to a good one.

The lowest setting on a CPAP is 4 cms and I agree w/the above. Heck, most of us can't even breathe comfortably at 4 cms with a mask and CPAP turned on!!! The majority of us need AT LEAST 6 cms for any comfort at all!

I'd be asking just what pressure setting is being recommended for this one month trial and specifically what device was going to be provided for this one month trial. It may well be that this "Fellow" isn't very advance yet on his sleep medicine training and hasn't the slightest idea that an autoPAP is what really is going to be provided for this one month trial or what the pressure settings might be. (Possibly 4 cms to 20 cms - that seems to be quite common for an autoPAP trial w/o a titration study).

AND, I've gotta ask given your mention of a "Fellow", are you talking one of the Mayo Clinics?? MN, FL, or AZ??

[allinknots]

Wow, JMaziarz and Slinky, yet again great responses!

JMaziarz, with your permission, I plan to print out your question list and work on answers to the questions as though it were a homework assignment. I know several answers already at the top-of-my-head, but a few others I'll need to research. Thanks for the worksheet, teach!

Slinky, I plan to follow your advice about asking for the copies of the full scored data summary report and graphs, etc., to the letter. Even before I got to this forum (you'll be proud of me!) I requested copies of the results. I don't think they're the full results, because it wasn't 5 pages. BUT, I do have the sleep clinic result summary pages and a condensed graph. The dr. first just printed up the pages of the summary, and I had to ask the secretary for the graph page. They both seemed a little surprised that I wanted this data. At the time, I wasn't even sure why I was asking--except that our daughter is finishing up her pharmacy doctorate degree and likes to read anything "medical".

This is what I'm planning to do at this point. Because I'm a little short on time this week (will be having out-of-town company), I'm planning to wait until the DME calls, and discuss what they heard from my insurance company. (I should probably also call the insurance company to see if they've told me the same thing.) Then I'm going to go-to-bat for the rental of a higher end machine. If I get any type of run-around from them, or they say my dr. didn't write a script for that or whatever, I plan to make an app't with the sleep Attending Physician that I like to discuss it with him. He seemed to be more of a "want to please the patient" kind of person, more knowledgeable than the "Fellow," and more "with it" in general. He seemed like the type who'd be impressed about a pro-active, informed patient as opposed to being aggravated by one. (It goes without saying that I plan to be kind and diplomatic throughout all of this.)

To answer your other question, I'm going to the Cleveland Clinic sleep study clinic, in Cleveland, OH

In a post below, I'll write out some of my sleep study data in case you're interested.

Thanks a bunch everyone once again. You folks are great! You have no idea how much you are educating me! You know how physicians always ask you to rate your pain on that **%^)&^ one-to-ten scale? Well if I were to rate my overwhelmedness (made up word?), it was a 10 the other day. Thanks to all of you, I am now down to an 8!

All in Knots

[Slinky]

Ah! Cleveland Clinic. Only a 5 hour drive for me compared to Mayo in MN which is 12 hours. But my family and I have been going to Mayo for some 50 years. My first visit was at age 12 w/my parents for my stepmother.

You really are catching on quick. I wish I had been that savvy when I first started!!! Ah well. You be sure to keep us informed! I sure wish my daughter had gone into pharmacy instead of engineering! Or my son into pharmacy instead of water treatment. *sigh* Ah well. At least they pretty much paid their own way w/co-op'ing, scholarships, etc. God bless them!

Is the "Attending Physician" acting as your PCP in the sleep department or is there another sleep doctor over him that you also see? I'm used to seeing several "Fellows" at Mayo as well as the PCP specialist in the past but my recent visits there is never a fellow just one of their leading researchers as my PCP specialist. I liked it better when I could get opinions from the Fellows as well, even when the opinions differed. In '94 when we were there and my hubby had his back surgery we had both the Neurologist and several neurology and orthopedic Fellows but the orthopedic surgeon pretty much ran the show and not as much input from the Neuro and the Fellows as we have been used to in the past. I'm more comfortable w/the diverse opinions like we used to get there before making my own informed decision. Altho the care is worth the trip I miss the "old way" very much!!

[allinknots]

OK, not sure this should be a different topic or not, but I thought I'd post some of my sleep study data for you just in case you have any suggestions (machine suggestions?) for me or you'd like to share your thoughts.

• Sleep efficiency was 89.9%, TRT = 385 m. (No idea what that means)
  28 awakenings with a total time awake after sleep onset of 34.5 mins.
  Slept 70.2% in supine position.
  They mentioned "arousals" and and "arousal index". I'm not sure if that refers to s*xual arousals or something else. (??)
  Also talked about stage shifts. Not sure what that is either.
  "Snoring was noted. There were 111 respiratory events consisting of one obstructive apnea and 110 hypopneas."
  The AHI was 19.2. (Nor sure what a normal range is?)
  Mean oxygen saturation was 92.0%, with minimum oxygen saturation of 85.0%. Spent 9.3% of sleep time with an oxygen saturation below 90%. (Pharmacist daughter said 85% is too too low!)
  Maximum en-tidal CO2 was 54 mmHg.
  7.6% of sleep time with EtCO2 above 45 mmHg, and .6% above 50mmHg.
  27 periodic limb movements during sleep, PLM index of 4.7 (not sure why that is or what normal range is)
  Heart rate during sleep range from 62-80, average 69 beats per minute
  
  "Impression: Severe positional obstructive sleep apnea syndrome associated with significant oxygen desaturations (nadir of 85% on rom air). Of note, the off-supine AHI was in the normal range.
  Abnormal sleep architecture likely due to respiratory events and first night effect."

These are from the Interpreting Physician's report. This was a two-page report , and I also received a one page copy of graphs that show sleep stages, body position, apenas/hypos, microarousals, leg movements, oxygen saturation.

No "centrals" were noted, but I'm guessing that I occasionally have those. There have been times when I've woken up feeling almost angry that I woke from my death-like sleep to take a breath. It's a different feeling from waking from snoring. It's more like I'm entirely relaxed, almost dead, and then my body wakes me up as if to say, "You're not dead, you're alive, so take a breath, Stupid!" Is that what a central feels like? But now that I'm thinking of it, that might only occur if I've taken a muscle relaxant, which I frequently need to do for muscle knots/spasms.

The "Fellow" sleep dr. did not explain what each and everything meant above, or what normal ranges are. He just basically told me that I have positional OSA, need a CPAP machine, and from reading my other posts you know the rest! In defense of the dr., he knew I was overwhelmed and knew nothing about OSA or CPAP therapy or anything, so I'm sure he didn't want to go over my study line-by-line with me since I would have just given him a "doe in the headlights" type of look.

Please share your thoughts,
All in Knots

[DreamStalker]

Go ahead and get the lab titration ... you will need that to get the prescription. Once you have the Rx in hand, you hold the keys to your treatment and you can take control of it from the DMEs.

[pabneypaol]

After my sleep study the doc wanted to send my script strait to my "chosen" DME. I told him I wanted the script in hand as I was going to buy the equipment online as it was cheaper. I had to fight tooth and nail to get that prescription, but I finally got it. I then just bought the equipment outright from cpap.com. With my deductible it just made more sense that way. I am now looking at cpapauction.com for my back up equipment.

I chose my equipment based on recommendations on this forum and the ratings on cpap.com. I believe I made the correct decisions. I am sorry I can not recommend equipment just yet. I have only been doing this for a month now, so I do not feel qualified for that, but I will give one piece of advise that has helped me:

When talking to an "expert", be sure to as some questions that you already know the answer to. You can judge their knowledge on the subject and get a better idea of just how many grains of salt must be taken with their suggestions.

Good luck with your therapy, and keep at it. It is very, very worth the efforts.

[Slinky]

... Sleep efficiency was 89.9%, TRT = 385 m. (No idea what that means)
28 awakenings with a total time awake after sleep onset of 34.5 mins.
Slept 70.2% in supine position.
They mentioned "arousals" and and "arousal index". I'm not sure if that refers to s*xual arousals or something else. (??)
Also talked about stage shifts. Not sure what that is either.
"Snoring was noted. There were 111 respiratory events consisting of one obstructive apnea and 110 hypopneas."
The AHI was 19.2. (Nor sure what a normal range is?)
Mean oxygen saturation was 92.0%, with minimum oxygen saturation of 85.0%. Spent 9.3% of sleep time with an oxygen saturation below 90%. (Pharmacist daughter said 85% is too too low!)
Maximum en-tidal CO2 was 54 mmHg.
7.6% of sleep time with EtCO2 above 45 mmHg, and .6% above 50mmHg.
27 periodic limb movements during sleep, PLM index of 4.7 (not sure why that is or what normal range is)
Heart rate during sleep range from 62-80, average 69 beats per minute

"Impression: Severe positional obstructive sleep apnea syndrome associated with significant oxygen desaturations (nadir of 85% on rom air). Of note, the off-supine AHI was in the normal range.
Abnormal sleep architecture likely due to respiratory events and first night effect."[/list] ...

Okay, this "ain't" my cuppa tea but I'll comment on what I think I do know and/or understand. Smarter ones than I should be along to better interpret things.

1] TRT = 385 m I'm pretty sure that mean Total Recording Time
2] It took you 34.5 minutes to fall asleep after lights out. I don't really want to comment on "awakenings" vs "arousals" 'cause I'm not totally sure of the difference.
3] You spent most of the night, 70.2% of it, sleeping on your back which is what supine means.
4] Relax. Sleep study arousals have nothing to do w/s*xual arousals. In this context they mean interruptions of deep sleep stages back to lighter sleep stages but necessarily a full awakening to awareness.
5] Stage shifts refer to moving from one stage of sleep to another. Stage 1 is just dozing in and out. Stage 2 is the first stage of real sleep but it is light sleep and you are easily awakened, its where most of us spend most of our sleep. Stages 3 & 4 are our deepest sleep where we get the most rest and restoration from the day's activities, often called "delta" or "slow wave" sleep, referring to our brain waves which slow down considerably during these stages. Sometimes stages 3 & 4 are lumped together for reporting purposes.
6] An AHI of <5 is considered "normal" sleep. 5 to 15 is considered mild OSA, 15-30 is considered moderate OSA and more than 30 is considered severe OSA.
7] Yup, your daughter is right. No one likes to see our 02 saturations drop below 90%. Almost 10% of your sleep time was spent at less than 90% oxygen levels.
8] Maximum en-tidal CO2 was 54 mmHg. 7.6% of sleep time with EtCO2 above 45 mmHg, and .6% above 50mmHg. I'm not at all sure about this as I wasn't even aware they could measure your CO2 during a sleep evaluation OR titration!! I thought that could only be done via an ABG (arterial blood gases draw) or a very sophisticated piece of equipment not usually available for standard sleep evaluation and CPAP titration. I'd like to know more about this!
9] I have absolutely NO IDEA of what a "normal" amount of leg movements would be nor what the "normal" heart rate during sleep would be.

[jmaziarz]

JMaziarz, with your permission, I plan to print out your question list and work on answers to the questions as though it were a homework assignment. I know several answers already at the top-of-my-head, but a few others I'll need to research. Thanks for the worksheet, teach!

Sure thing! Glad to help.

[Catnapper]

Unlike most other posters, I had very good luck with the DME. At first, I had the RT assigned to me who followed the original prescription which was for a basic Resmed cpap with pressure of 15cmH20. That part was not so good. I had all and more of the newbie problems, including not great advice from that RT. I finally got to see the excellent doctor about 6 weeks after my split-night study. He wanted to have me try a month on an auto machine to see what was found while I slept in my own environment.

Somehow I talked my way into seeing the owner of the DME, which is a local business. He started me on a Resmed auto, I think it was called the Vantage, and after I talked to him a bit, agreed to give me the weekly printout of my data from the machine. What a nice guy. All I had to do was deliver the card that collected the data. He even gave me several cards so I always had a fresh one. When I went to the doctor to review the results, I was prepared to ask for what I really wanted which was the Respironics M series Auto. He wrote the Rx for me because I showed him that there was exhale relief in that brand but not the Resmed on auto, and I felt I needed the extra relief.

After several months of struggling, I spoke again to the DME owner and asked if I could try a bipap. When I explained why, he said he would talk to the doctor for me and prepare all the paperwork for the prescription and the insurance for the doctor to sign.The owner of the DME is an RT also, so he knew how to tell the doctor what was necessary to justify the bipap. In just a few days I had my M series auto bipap with biflex. All of this happened in my rental period. The only change was that the bipap started another 10 month period because it was a different category of machine. He also said that they only carried the auto bipap because the prices were almost the same as the plain bipap and why not get the best?!

I was in the office a couple months ago, and he saw me. We sat and chatted for about 20 minutes. He loves to hear success stories. This DME only carries sleep apnea equipment, and other respiratory items like the oxygen machines and other kinds of masks.

The doctor and this DME owner work closely together, but I don't believe they are in business together. The doctor and his staff are so good to me. They get a big kick out of my homemade headgear (started with legs of pantyhose, and progressed to the more current model I make) and that I bring my own data. My last sleep study (after a year from the first one) showed that I had my machine set for the precise pressure that they determined in the bipap titration.

All of this came about because I read everything posted here and tried adjustments that worked for other people. My doctor is pleased that I take interest in my therapy and encourages me in that pursuit. He said he only has 5 or 6 patients who collect their own data. He is very willing to help or answer questions to make it easier for me.

Insurance paid for everything, except for most of the 13 masks I bought before I finally got the Headrest. Of course, I paid for the insurance, the deductibles and the copays. Nothing is free.

I feel like I have a success story here. My AHI is always under 1, and often is 0.0, that is total AHI. That is after the study showed severe OSA and O2 saturation at 71%. Quite a comeback. I recently passed my 2 year anniversary. Seeing the data in the beginning showed me that the therapy was working, and that encouraged me to continue and to make the rest of the small changes to make it better.

Good luck to you. The insurance may help. However, I would not hesitate to buy what I wanted if I could if the insurance didn't pay. The doctor was willing to write the RX, so that was good reassurance that I was not risking my life with making decisions. Others here don't have that advantage, and have to decide by themselves. Just because the doc writes the RX does not mean that the insurance will pay. He offered to write an Rx for a vacation and a fancy car if I wanted, but with no guarantee that the insurance would pay. Oh well.

[allinknots]

Slinky wrote,

Relax. Sleep study arousals have nothing to do w/s*xual arousals. In this context they mean interruptions of deep sleep stages back to lighter sleep stages but necessarily a full awakening to awareness.

That's a good thing, because for the life of me I couldn't figure out what in this sleep study would have been turning me on so much...

Thanks for the explanations of my sleep study report. I'm wondering why the dr. came up with "Severe positional OSA" if my AHI was in the moderate range? Perhaps because of the low O2 levels? (Wow I'm sounding mighty scientific here.)

As far as the end-tidal CO2 reading--I'm not sure how they got that. But I was at the major sleep study lab the Cleveland Clinic has, and I know they have more capabilities at that lab as compared to their satellite locations. Also, originally I was signed up for a research study, but was kicked out of it due to the fact that I only recorded one full apnea that night. (They needed more full apnea events for me to remain in the study.) But perhaps since I originally was in a study, they pulled out all the bells and whistles for me. (?)

[gasp]

I've been doing some reading on the forum, and as a newbie I am overwhelmed. I don't have my XPap yet (please see my other post), but I'll be meeting with a DME person this week. I know I need to research the different machines, but it's difficult to decide which is better.

I'm wondering: How did you end up with the machine(s) you have? Did your dr. choose for you? Did you just rent several machines until you found the one you liked? If you had to do it all over again, i.e. choose a machine, what would you do the same and what would you do differently?

Thanks,
All in knots

I spent time on this forum and got suggestions, then researched the most popular machines, found a new machine entered the market (the Respironics M Series A-Flex, and decided to get it. It has exhalation relief, which to me mimics regular breathing. Otherwise, I felt as if there was incoming air all the time and I couldn't exhale easily enough. This was especially the case when my asthma/allergies flared up. Also, it has records data internally as most do and onto a card, which can then be read with a card reader and I can watch my data. This allowed me to know when certain masks and other conditions affected my AHI.

I notified my doctor of the machine I wanted and why. He wrote the prescription. The DME filled it. I did stay in contact with the DME to ensure they ordered the correct machine and that when it came I got the data card.

[allinknots]

Catnapper, I'm so glad to hear your success story!

You mentioned that you had difficulty exhaling. Before my sleep study, when I was still in the research study, a sleep tech saw me for awhile and tried me on a machine with a few different masks. I have very small nasal passages, and struggle with allergies and sinus issues. (I had deviated septum corrective surgery years ago, which helped immensely, but even the surgeon said that my nasal passages are "tight".) Because of this, I tend to augment my nasal breathing with mouth breathing. This is not just "by habit," but by necessity.

When the sleep tech had me exhale against the pressure of air, I about suffocated. I couldn't do it with the nasal mask alone. He tried a full face mask on, and then reduced the exhalation pressure and that felt much better.

So I think I'll also need a machine with that capability.

Do you use a full-face mask? Do most mouth-breathers need a full face mask? I've read that some people use nasal pillows with a full face-mask. How can that be? I thought you'd have one of the other? Also, how did you know you needed to go to the bi-level?

Thanks again,
All in Knots

[allinknots]

And, as though I'm not asking enough questions already (I feel like a two year old after she just learns how to say the word, "Why"), I have an insurance question for you.

Let's say the insurance company covers $X on a machine. Let's say you have a script from the dr. for a higher end machine. You go to an in-network DME. Does the in-network DME just accept the contracted payment from the insurance company, and you pay the co-insurance amount, or do you have to pay the difference for the higher cost machine?

All in Knots

[Wulfman]

And, as though I'm not asking enough questions already (I feel like a two year old after she just learns how to say the word, "Why"), I have an insurance question for you.

Let's say the insurance company covers $X on a machine. Let's say you have a script from the dr. for a higher end machine. You go to an in-network DME. Does the in-network DME just accept the contracted payment from the insurance company, and you pay the co-insurance amount, or do you have to pay the difference for the higher cost machine?

All in Knots

There's no single/simple answer to your question(s), but you should NOT have to pay any difference for a higher-cost machine. All CPAPs and APAPs have the same insurance codes (rental/purchase). However, some insurance providers are stupid and won't let their insured get an APAP unless or until some arm-twisting is performed (letter of necessity) by the doctor.....if he/she is "onboard" with you getting an APAP.

Den

[Catnapper]

I will try to answer the questions. I use the Headrest, which is a nasal pillows type mask. I don't need the full face mask because I am one of the lucky ones who does not have a problem with air leaks while sleeping. The Headrest works wonderfully for me, and what I like best is the way the exhaust goes over the eyebrows, straight up. There are full face masks that utilize the nasal pillows, and the Hybrid comes to mind as an example.

When I asked about the bi-pap it was because I struggled with the exhale part. With the bi-pap the exhale is a lower pressure than the inhale, so the contrast makes it feel like there is no resistance when you exhale. I too had asthma and fighting the exhale reminded me of asthma attacks when it is so difficult to exhale. I told the DME owner that I was having so much trouble and that I could not sleep because of it. I must have said the right thing. I think the fact that I had tried so long and so hard with the regular auto-pap helped with the insurance. Apparently if you fail with cpap or auto-pap, then they are willing to consider bi-pap. I think that severe aerophagia also can help get one. That was not my problem.

At first I did not want the nasal pillows because I had used the Swift and it made me have piggy nose. It was very uncomfortable. The Headrest does not need to be tight against the nose so it avoids that issue. It barely floats on my face and has almost no weight. It does make some noise that might bother some people. I just pretend it is ocean waves and ignore it. I read about it here and finally in desperation tried it. I wish I had not waited so long. A few months ago I gave my other masks a trial to see if one would serve as a backup, but when I did I wondered how I tolerated them during the early months of my therapy. Most of them have some good features and some bad. None of them gave me such good AHI numbers and low leak rates as the Headrest. Now I just have an extra one as my backup. No problem.

If your doctor cooperates it will surely help. The folks here can tell you their experiences and you can judge for yourself if you want to try what worked for them.

Oh, one more thing that helped is to have the hose hang over my headboard so I didn't have to fight with it. I bought a heated hose to avoid rain-out, and have a nice cover on it so it doesn't feel cold and like the plastic it is. I guess that is several things. Most of all, I finally got used to the whole dang thing too. It takes time and effort. I am also stubborn. I was going to win. In the end, it is much better than taking pills for me, although most of us would prefer a simpler, easier solution. It helps a lot to feel part of this very special community of people at cpaptalk.