Replies to This Discussion

Permalink Reply by sleepycarol on August 13, 2009 at 1:32am

In our community it is pretty common that you won't see the sleep doctor. We are in a rural community and one sleep doctor for a 75 mile radius approximately. The local hospital has a 2 bed satellite sleep clinic in a small community about 30 miles south, and they have established a new 6 bed stand alone sleep clinic on hospital property. It was difficult to get an appointment when I did my sleep studies in 2007 with only the 2 bed satellite clinic and the 2 bed hospital clinic. Since the addition of the additional rooms, it is probably an even longer wait than it was back then (very similar to what you are experiencing).

I do not see a need to spend good money going to a sleep specialist when I have a data capable machine and the software to monitor my own therapy. I use the forums as a sounding board and help. My primarcy care doctor has stated I probably know more about sleep apnea and the use of a cpap than she does. I have garden variety OSA though and have adjusted to therapy without much difficulty. Your experience may not be the same. If you want to see the sleep specialist, call and request the appointment be changed.

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Permalink Reply by Judy on August 13, 2009 at 8:17am

Welcome to the world of sleep medicine. Not too impressive is it? The real heroes, the RPSGTs (sleep techs) aren't even recognized as "medical personnel". Ah well.

First: what brand and model xPAP do you have. The model name is probably on the top of your xPAP. It is on the cover of your Users Manual. Do you have an integrated heated humidifier? What mask are you using? The name of the mask is on the literature you received w/it. How long have you had this xPAP you are using?

Second: send a written request to the sleep lab for 1] a copy of the doctor's dicated results (1-2 pages each) AND the full scored data summary report w/condensed grpahs (5+ pages each) from both your in-lab sleep evaluation PSG and your in-lab xPAP titration PSG AS WELL AS a copy of your equipment order (script). These are all part of your medical records and as such you have a LEGAL RIGHT to them under HIPAA (assuming you are in the USA). The written request will give them fair warning that you are interested in your OSA therapy - and a clear indication that you just might not be the the meek little lamb who's going to swallow and obey every little dictate from them w/o question. On the other hand, it IS just an innocent request for copies of your medical records so they have nothing to take offense from. *wicked grin*

Third: You just 'might" be pleasantly surprised by the knowledge and advice you get from the NP or PA and the time they may be able to spend w/you.

And then my next question: what local DME supplier is providing your equipment? Is the supplier obviously connected to this sleep lab?

It just might be worthwhile to put in a call to your insurance company and ask them what local DME CPAP suppliers they are contracted with. It might prove helpful to know if you have the option of more than just this one. Its always nice to have some bargaining/negotiating room. Do you know just what your insurance covers? Not necessarily just what and when your current xPAP supplier tells you but straight from the horse's mouth (insurance company) what your coverage, copays and deductables are.

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Permalink Reply by susan mccord on August 13, 2009 at 8:18am

Hi Carol--My concern is that the MD who analyzed both my sleep studies said repeatedly, in the lab report, that I should be followed closely because I was still having "episodes" at 7--her rec was to start at 9 and then be closely followed because I hadn't been tested to see what CPAP setting would be effective. I don't have a prescription, just complete lab reports. The most I sleep with CPAP is 5 hours, usually actually asleep 4 to 41/2 hours. In recent days, I wake up feeling like I'm not getting enough air. Case in point, this a.m. I woke up at 6:00 a.m. after 4.5 hours sound sleep. Again felt I wasn't getting enough air. Got up briefly, back to bed with CPAP, and after about half an hour, I was so uncomfortable with the lack of air that I had to get up. It scares me that my settings aren't high enough. How am I supposed to know if I'm safe? It seems notable to me that it's always after 4-5 hours of what seems like sound sleep. I don't know what that means. How am I supposed to find out if I don't see an MD that knows sleep disorders? My family doc is great and very accessible but he doesn't know squat about apnea except to refer out.

This whole follow-up thing is gonna tip me over if I don't find somebody soon. It's been 2 months now. What kind of close follow-up is that???

I had a hard time getting comfortable with CPAP and still have respiratory problems daily. But I'm okay with the mask now. It concerns me that in the same period of time EVERY NIGHT, I wake up and feel like I'm not getting enough air. Is something happening to me after that much time asleep? I need to see a doctor.

I can understand the difficulty in getting specialized care in a low population area. But I live in a big city, with several major hospitals.

Susan McCord

sleepycarol said:

In our community it is pretty common that you won't see the sleep doctor. We are in a rural community and one sleep doctor for a 75 mile radius approximately. The local hospital has a 2 bed satellite sleep clinic in a small community about 30 miles south, and they have established a new 6 bed stand alone sleep clinic on hospital property. It was difficult to get an appointment when I did my sleep studies in 2007 with only the 2 bed satellite clinic and the 2 bed hospital clinic. Since the addition of the additional rooms, it is probably an even longer wait than it was back then (very similar to what you are experiencing).

I do not see a need to spend good money going to a sleep specialist when I have a data capable machine and the software to monitor my own therapy. I use the forums as a sounding board and help. My primarcy care doctor has stated I probably know more about sleep apnea and the use of a cpap than she does. I have garden variety OSA though and have adjusted to therapy without much difficulty. Your experience may not be the same. If you want to see the sleep specialist, call and request the appointment be changed.

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Permalink Reply by RockRpsgt on August 13, 2009 at 8:36am

Even at our practice it is not common for our patients to see one of our physicians off of the bat. Do not knock those nurse practitioners or physician assistants Susan. Alot of times they are RTs,RPSGTs, or RNs. The gentleman who does our follow ups/consults has all 3 credentials. He is also a PAP user. I think this might give him even more insight to the cases he sees. Do not give up yet. Go to your appointment and hear them out. make your decision after that. In Indy we are blessed with quite a few good sleep labs and sleep doctors.

Can you post your paperwork? it would help the techs on here answer your questions better if we could see them.

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Permalink Reply by susan mccord on August 13, 2009 at 8:46am

Hi Judy--My pump is RESPIRONICS REM STAR PRO, M SERIES, WITH BUILT-IN HUMIDIFIER. The mask is a Comfort Gel nasal mask/petite, which fits fine and is comfortable. I've been on CPAP for a month. Was diagnosed late June 2009. The DME is well-known around here. When I had my sleep study, they asked me what DME I wanted. I told them I had no idea and for them to choose one that they knew was good. I have no c/o re: my tech. He's very responsive to phone calls and gives me immediate service on whatever I may need.

Re: insurance--I'm on Medicare and have an excellent supplemental policy. I've never had to pay anything for any of the medical treatment I've had in the past 2 years, including cardiac and regular office visits and labs PRN (often) because of heart meds. I can see any MD I choose and don't need a PCP referral. No concerns re: insurance, thank God.

I have FULL lab reports, including all graphs and MD assessment with recs for close followup due to, as I said before, I still had episodes at 7 and she wasn't sure 9 would be sufficient but to start there and titrate as necessary.

I think that answers all your questions.

Susan McCord


Judy said:

Welcome to the world of sleep medicine. Not too impressive is it? The real heroes, the RPSGTs (sleep techs) aren't even recognized as "medical personnel". Ah well.

First: what brand and model xPAP do you have. The model name is probably on the top of your xPAP. It is on the cover of your Users Manual. Do you have an integrated heated humidifier? What mask are you using? The name of the mask is on the literature you received w/it. How long have you had this xPAP you are using?

Second: send a written request to the sleep lab for 1] a copy of the doctor's dicated results (1-2 pages each) AND the full scored data summary report w/condensed grpahs (5+ pages each) from both your in-lab sleep evaluation PSG and your in-lab xPAP titration PSG AS WELL AS a copy of your equipment order (script). These are all part of your medical records and as such you have a LEGAL RIGHT to them under HIPAA (assuming you are in the USA). The written request will give them fair warning that you are interested in your OSA therapy - and a clear indication that you just might not be the the meek little lamb who's going to swallow and obey every little dictate from them w/o question. On the other hand, it IS just an innocent request for copies of your medical records so they have nothing to take offense from. *wicked grin*

Third: You just 'might" be pleasantly surprised by the knowledge and advice you get from the NP or PA and the time they may be able to spend w/you.

And then my next question: what local DME supplier is providing your equipment? Is the supplier obviously connected to this sleep lab?

It just might be worthwhile to put in a call to your insurance company and ask them what local DME CPAP suppliers they are contracted with. It might prove helpful to know if you have the option of more than just this one. Its always nice to have some bargaining/negotiating room. Do you know just what your insurance covers? Not necessarily just what and when your current xPAP supplier tells you but straight from the horse's mouth (insurance company) what your coverage, copays and deductables are.

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Permalink Reply by susan mccord on August 13, 2009 at 9:03am

Rock--I don't know how I'd post all these reports--there are 5 full pages!!

Do you have a professional (not your personal) email address where I could ask you a confidential question?

Thanks for the info re: physician's assistants being more qualified than an ordinary PA. I totally trust what respiratory techs and nurse practitioners have to say. My DME tech is a CPAP user for 26 years. I DO have confidence in Nurse Practioners. Have worked with them in Hospice and have a good friend (NP) who is extremely knowledgeable. I'm not uncomfortable with ANYONE who knows what they're talking about--I just didn't know that this is common practice with intake. It still makes no sense to me. Can the NP prescribe changes to my Rx for 9, which I don't have a copy of. There must not be one, 'cause the clinic where I had my sleep study have NO problem giving me copies of anything I want.

My problem right now is that in the past couple of days, I've integrated the PHYSICAL concern re: apnea. I'd finally accepted it intellectually, but experiencing this feeling of "not enough air" is just unsettling as hell--I totally get the concern about apnea now. It scares me to think my pump isn't adequately set.

Susan McCord

-Susan McCord

Rock Hinkle said:

Even at our practice it is not common for our patients to see one of our physicians off of the bat. Do not knock those nurse practitioners or physician assistants Susan. Alot of times they are RTs,RPSGTs, or RNs. The gentleman who does our follow ups/consults has all 3 credentials. He is also a PAP user. I think this might give him even more insight to the cases he sees. Do not give up yet. Go to your appointment and hear them out. make your decision after that. In Indy we are blessed with quite a few good sleep labs and sleep doctors.

Can you post your paperwork? it would help the techs on here answer your questions better if we could see them.

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Permalink Reply by RockRpsgt on August 13, 2009 at 9:19am

rockhinkle at yahoo dotcom. Yes the the NP or PA si qualified to make the necessary changes that you may need.

susan mccord said:

Rock--I don't know how I'd post all these reports--there are 5 full pages!!

Do you have a professional (not your personal) email address where I could ask you a confidential question?

Thanks for the info re: physician's assistants being more qualified than an ordinary PA. I totally trust what respiratory techs and nurse practitioners have to say. My DME tech is a CPAP user for 26 years. I DO have confidence in Nurse Practioners. Have worked with them in Hospice and have a good friend (NP) who is extremely knowledgeable. I'm not uncomfortable with ANYONE who knows what they're talking about--I just didn't know that this is common practice with intake. It still makes no sense to me. Can the NP prescribe changes to my Rx for 9, which I don't have a copy of. There must not be one, 'cause the clinic where I had my sleep study have NO problem giving me copies of anything I want.

My problem right now is that in the past couple of days, I've integrated the PHYSICAL concern re: apnea. I'd finally accepted it intellectually, but experiencing this feeling of "not enough air" is just unsettling as hell--I totally get the concern about apnea now. It scares me to think my pump isn't adequately set.

Susan McCord

-Susan McCord

Rock Hinkle said:

Even at our practice it is not common for our patients to see one of our physicians off of the bat. Do not knock those nurse practitioners or physician assistants Susan. Alot of times they are RTs,RPSGTs, or RNs. The gentleman who does our follow ups/consults has all 3 credentials. He is also a PAP user. I think this might give him even more insight to the cases he sees. Do not give up yet. Go to your appointment and hear them out. make your decision after that. In Indy we are blessed with quite a few good sleep labs and sleep doctors.

Can you post your paperwork? it would help the techs on here answer your questions better if we could see them.

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Permalink Reply by Judy on August 13, 2009 at 9:53am

Forgive me, sleep professionals, BUT, this is a situation where I strongly feel Susan McCord NEEDS a fully data capable APAP!!! We/they (the professionals) NEED to see the TRENDS is Susan's sleep thru out not just one night but thru out SEVERAL nights.

I don't know if ALL of us, or just some of us, experience most, or at least more, of our "events" towards early morning or not but I've read of others, and see in my own sleep pattern, where I assume I am getting my deepest sleep towards early morning as I see my HR going down and lowest in the early morning hours. Many report they have their most events or cluster of events in the early morning hours. This could be the explanation for those first 4-5 hours of what seem like good sleep and then not being able to breathe comfortably or get back to sleep after waking.

Susan, I know this seems like "reverse logic" but is your Ramp turned on and do you use it after waking whilst trying to get back to sleep? You might try turning Ramp off to see if your breathing is any easier and more comfortable after waking and while trying to go back to sleep.

Barring receiving an APAP, if I were Susan I would be taking my data card in to the supplier or sleep lab and insisting on a full download and printout of my data EACH and EVERY WEEK so that any necessary pressure or other therapeutic changes could be made much more quickly. And I would insist on a copy of that download to see for myself (and to share w/the pros here).

What's your take on this idea, Rock Hinkle??

I'm also on Medicare w/good supplementary insurance, Susan. And while timing now is getting CRITICAL (anytime after 30 days gets tricky for exchanging devices) I'd be pushing my local DME supplier for an exchange of that Pro for a Respironics REMstar M Series Auto w/A-Flex as my PERMANENT xPAP and set at a pressure range 1-2 cms below my titrated pressure and 2-3 cms above my titrated pressure w/that range adjusted as needed based on EACH one week's data until we found my "sweet spot" of pressure.

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Permalink Reply by susan mccord on August 13, 2009 at 10:04am

Judy--THANK YOU!! Now I feel like someone has finally heard me....

My pump has a card. Is that what you're talking abour?. I'm supposed to send it in to the DME headquarters monthly. My DME sent it for me a couple of days ago 'cause I was in there having my entire unit replaced--it misfunctioned two nights ago. Ramp is off. I don't need it anymore at this pressure of 9. I guess I got used to the initial hit and now it feels good. The DME tech printed out a thing that showed me exactly how many hours I'd been on CPAP (for Medicare $$). Does that mean he has the capability to do what you're talking about?

Susan McCord

Judy said:

Forgive me, sleep professionals, BUT, this is a situation where I strongly feel Susan McCord NEEDS a fully data capable APAP!!! We/they (the professionals) NEED to see the TRENDS is Susan's sleep thru out not just one night but thru out SEVERAL nights.

I don't know if ALL of us, or just some of us, experience most, or at least more, of our "events" towards early morning or not but I've read of others, and see in my own sleep pattern, where I assume I am getting my deepest sleep towards early morning as I see my HR going down and lowest in the early morning hours. Many report they have their most events or cluster of events in the early morning hours. This could be the explanation for those first 4-5 hours of what seem like good sleep and then not being able to breathe comfortably or get back to sleep after waking.

Susan, I know this seems like "reverse logic" but is your Ramp turned on and do you use it after waking whilst trying to get back to sleep? You might try turning Ramp off to see if your breathing is any easier and more comfortable after waking and while trying to go back to sleep.

Barring receiving an APAP, if I were Susan I would be taking my data card in to the supplier or sleep lab and insisting on a full download and printout of my data EACH and EVERY WEEK so that any necessary pressure or other therapeutic changes could be made much more quickly.

What's your take on this idea, Rock Hinkle??

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Permalink Reply by susan mccord on August 13, 2009 at 10:14am

Judy--my unit is guaranteed for 2 years, per DME, so there's no cost to Medicare (or me) for a replacement if it malfunctions. He just sent it back to the manufacturer. My pump has a data thing attached. I don't know how to work it and can't seem to follow the directions 'cause I'm too foggy. DME talked me through a change on it a couple of weeks ago, via phone.

Susan McCord

Judy said:

Forgive me, sleep professionals, BUT, this is a situation where I strongly feel Susan McCord NEEDS a fully data capable APAP!!! We/they (the professionals) NEED to see the TRENDS is Susan's sleep thru out not just one night but thru out SEVERAL nights.

I don't know if ALL of us, or just some of us, experience most, or at least more, of our "events" towards early morning or not but I've read of others, and see in my own sleep pattern, where I assume I am getting my deepest sleep towards early morning as I see my HR going down and lowest in the early morning hours. Many report they have their most events or cluster of events in the early morning hours. This could be the explanation for those first 4-5 hours of what seem like good sleep and then not being able to breathe comfortably or get back to sleep after waking.

Susan, I know this seems like "reverse logic" but is your Ramp turned on and do you use it after waking whilst trying to get back to sleep? You might try turning Ramp off to see if your breathing is any easier and more comfortable after waking and while trying to go back to sleep.

Barring receiving an APAP, if I were Susan I would be taking my data card in to the supplier or sleep lab and insisting on a full download and printout of my data EACH and EVERY WEEK so that any necessary pressure or other therapeutic changes could be made much more quickly. And I would insist on a copy of that download to see for myself (and to share w/the pros here).

What's your take on this idea, Rock Hinkle??

I'm also on Medicare w/good supplementary insurance, Susan. And while timing now is getting CRITICAL (anytime after 30 days gets tricky for exchanging devices) I'd be pushing my local DME supplier for an exchange of that Pro for a Respironics REMstar M Series Auto w/A-Flex as my PERMANENT xPAP and set at a pressure range 1-2 cms below my titrated pressure and 2-3 cms above my titrated pressure w/that range adjusted as needed based on EACH one week's data until we found my "sweet spot" of pressure.

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Permalink Reply by Saz RPSGT on August 13, 2009 at 12:22pm

I'm going to play the part of the advocate for the PAs and FNPs.

I know that most people really like to see the M.D. because....well....they've got an MD attached to their name. I've found that the PAs and FNPs that work with our MDs (in the central CA area) are outstanding and are seen as extensions of the MD. If they work with a sleep specialist, then they can also be seen as sleep specialists.

Now I'll be the advocate for you Susan! :^)

If you aren't comfortable or feel short-changed by seeing a non-physician medical professional, then demand (nicely of course) that you seen the M.D. You have every right to see the MD. Most people do want to see the MD and because of that there is a long wait to see them. Make it clear that you would be happy to be put on a cancellation list to see them. Hopefully your schedule is flexible enough to accommodate a short notice appointment.

Good luck Susan!

Jason

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Permalink Reply by Judy on August 13, 2009 at 1:44pm

Your Respironics REMstar M Series Pro w/C-Flex is NOT a pump. It IS a fully data capable CPAP. I wasn't aware that your first Pro had malfunctioned. I WAS suggesting that you give serious consideration to exchanging that fully data capable CPAP for a fully data capable APAP. Since you feel you have all the reports I'll leave it up to our pros to help you out w/them.

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