Replies to This Discussion

Permalink Reply by RockRpsgt on August 13, 2009 at 1:46pm

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.

Susan would benefit from both of these options. I do not think that demanding anything would help. Sugar is always better than salt. Susan you should explain your wants and worries to whomever you see at your next appointment. Explain too them that you understand that they are too busy to see you every week to monitor your treatment. Explain that If they gave you a fully data capable machine, with the software, that you could monitor your own data and report back to them bi-weekly. i believe that this would be a good solution for both parties.

Judy said:
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.

your deepest sleep is actually in the first half of the night during stage 3 sleep. People tend to have more apneac events in REM. We have longer periods of REM in the second half of the night. Typical sleep arcitecture would be 1st 1/3 of sleep stage 3> REM, 2nd 1/3 of sleep stage 3= stage REM, and 3rd 1/3 of sleep stage 3

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Permalink Reply by susan mccord on August 13, 2009 at 3:47pm

Thanks, Judy--I'm actively looking for another MD. I don't care WHERE I have to go now--I just need someone who's accessible.

What's APAP?

Susan McCord

Judy said:

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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Permalink Reply by Mike on August 13, 2009 at 7:31pm

APAP is an auto-adjusting flow generator that moves between a range of pressures depending on your needs throughout the night. Not just one fixed pressure like your straight, standard CPAP machine.

susan mccord said:

Thanks, Judy--I'm actively looking for another MD. I don't care WHERE I have to go now--I just need someone who's accessible.

What's APAP?

Susan McCord

Judy said:

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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Permalink Reply by Dave Hargett on August 13, 2009 at 10:24pm

Susan,

I'm not sure what was going on that they didn't titrate you more fully in the lab, but I suspect your discomfort and "lack of air" at 4-5 hours of sleep signals that your pressure is not high enough to control your apneas while you're hitting longer periods of REM sleep. Before you started treatment you probably got even less good sleep and less REM. Now that you've been using the machine for a couple of months you're getting better sleep and dropping into more REM sleep. That's when the pressure need is often the highest.

Short of a full titration study, getting the DME company to loan you an APAP with data card is an option, with a range set at say 7-14 to allow the machine to reach higher pressures when you are in REM sleep. Once they have determined the correct pressure then you could go back to your CPAP at that pressure. I've been lucky to have a good relationship with my sleep doctor and he knows me well enough after 15 years that if I call and say I'm feeling a lack of air, he'll actually prescribe a 1 or 2 centimeter change to see I react to the pressure. Only done that a time or two, but he's willing to work with me without forcing a full study; on the other hand, I have gone to him and asked for a titration study and did wind up raising my pressure by 2 points.

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Permalink Reply by Judy on August 13, 2009 at 10:52pm

See! I told you our pros would provide some good advice!!! I'm pooped. Gotta hit the hay.

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Permalink Reply by susan mccord on August 13, 2009 at 11:15pm

Thanks, Dave--that's my fear, that I'll quit breathing inside that piece of time. This a.m. was unsettling to say the least. The interesting thing to me is that I've had that very problem for YEARS, dx as anxiety and/or depression. I haven't been able to sleep past 4 hours without medication for a long, long time. When I look back, I realize now that I was having apnea sx 35 years ago, to the point that my family was kidding me about it.

Seems as though a lot of people here were Rx'd a range that DME could work with. I've never seen a prescription, just a recommendation for the MD that evaluated my titration that I had episodes at 7 so she thought start CPAP at 9 and close clinical follow-up. That hasn't happened. I was dx'd the end of June, and I'm still on 9. Can DME change the pressure without an Rx? I still don't have a sleep MD--am scheduled 9/1, long wait.....Do you think I need another titration study? Is that even possible? I didn't get to that 4-5 hour mark during either of my sleep studies, so they wouldn't have seen it.

-Susan McCord

I think I've already reported a bunch of this same stuff on here, maybe tonight.

Mike said:

APAP is an auto-adjusting flow generator that moves between a range of pressures depending on your needs throughout the night. Not just one fixed pressure like your straight, standard CPAP machine.

susan mccord said:

Thanks, Judy--I'm actively looking for another MD. I don't care WHERE I have to go now--I just need someone who's accessible.

What's APAP?

Susan McCord

Judy said:

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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Permalink Reply by susan mccord on August 13, 2009 at 11:28pm

Rock--it's a relief to hear you say that the NPs and MA's are experienced in sleep disorder. I made a snap judgment based on, mostly, my sense that medical assistants aren't that involved in clinical care in general. Obviously I'm wrong in this case. I have great admiration for NP's--I've worked with them before and they're awesome, often know as much or (seems like) more that the MD. Or certainly explains things better. I was also thinking they wouldn't be able to change my Rx, so thanks for filling me in on THAT one. I've been thinking a lot today about how reactive I've been since that episode this a.m.--trying now to think more clearly, with help from SG. Also, thank you so much for the assistance you provided today.

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 susan mccord on August 14, 2009 at 9:32am

Rock--Re: sleep lab reports? When you have time, could you post the terms/dx abbreviations from sleep studies/titrations on SG? I'm WAY behind the learning curve on all that stuff. If I know which particular info is most important to you, I can reply with what's on my report. It's really long and I have no idea what any of it means.

At your convenience. Thanks!

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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