Spoke with my Doctor

[BleepingBeauty]

Had my sleep study on the 20th and called the doctor's office yesterday just to ask if there was anything I could do to tweak my therapy at home before I see her next week for the results. She called me back this afternoon, after looking over the results, and suggested that a pressure of 12 looks good. She says I do NOT have complex sleep apnea.

So she advised me to lower the pressure from 14 to 12. I asked if I should switch to a full-face mask, since I was still leaking air from my mouth during the study (and have to assume I'm doing the same at home). She said my leak rate with the chinstrap, even with the mouth leaks, was acceptable, so I'll stick with my current set-up for now. She's writing a prescription for a new chinstrap (which I'm due for in a couple of weeks, anyway) of my choice.

She cancelled my appointment for next week, since she gave me the basics of the results over the phone, and wants to see me in early July for a follow-up, at which time she'll go over my study with me in detail, and we'll see how I'm doing at 12cm. (Eighteen months in, and I'm coming full-circle, back to my original pressure; since that didn't seem to work very well for me for the first year of therapy, I don't know how or why it might work for me now. *sigh*)

During the phone call, it seemed to me she was satisfied with the machine I already have (no data), even though I'd told her I want to be more involved with my therapy and am sick and tired of being a mushroom! When I met her, she said patients should be involved; on the phone this afternoon, she said she thinks patients rely too heavily on the data from their machines. She did say she'd look into upgrading my machine through my insurance, but I don't have much confidence now that I'll actually get a data-capable machine.

I hate not knowing how things are going. If I can't get a new machine through my insurance, I guess I'll just have to find the money somewhere and buy one outright. I'll talk to her more about that when I see her for the follow-up and results. Maybe I'll feel a lot more rested by then? Probably just wishful thinking, but I'll give it my best shot.

In the meantime, the same ol' beat goes on, albeit at a slightly slower tempo...

[Slinky]

Bummer, BleepingBeauty. I'm sorry to hear your discouraging news.

By the way, have I told you how much I like your Veni, Vidi, Velcro sign?? LOVE it!

[Catnap]

How frustrating -- seems like it's always 2 steps forward, 1 step back, doesn't it? You might want to watch cpapauction.com for data-capable machines if you don't get anywhere with the insurance company; I got a great buy on mine (brand new, for about half of what it costs retail). That was the second time I used cpapauction.com, and got a great deal on new products both times.

[robertmarilyn]

Bummer, BleepingBeauty. I'm sorry to hear your discouraging news.
By the way, have I told you how much I like your Veni, Vidi, Velcro sign?? LOVE it!

Slinky beat me to it...good job Slinky ...I've been meaning to tell you BB, how much I like your signature line also

I'm sorry about the doctor. Get the detailed results from her and your prescription (I know, easier said than done, even though you are entitled to them)...then you can get your machine from CPAP.com if you want to give a different one a try.

And how could she really go over your test results in detail, over the phone?
mar

[GumbyCT]

I wonder if she is friendlier with your 1st doc more than previously thought. As already mentioned, you are entitled to a copy of your PSG and the prescription even before your appt. I would make a written request NOW, in case she decides to make you wait, again. Do not delay.

As much as I hate to say this, this is an example why you need to insist your 1st machine is data capable. And for newbies researching, do NOT take stories about replacing machines later or they pull stuff like this. Remember promises are made to be broken. You may have to read Bleepings other posts to fully understand how this started out.

To me, this is NOT professional behavior I would like in MY sleep doctor, or nurse or RT or ANY of my docs or staff. In fact, this makes the VA look & sound good. WOW.

Paying out of pocket may be your only choice at this point. But you will still need the PSG and script to help you understand what is going on.

Good Luck

[BleepingBeauty]

Bummer, BleepingBeauty. I'm sorry to hear your discouraging news.

By the way, have I told you how much I like your Veni, Vidi, Velcro sign?? LOVE it!

Yeah, the call was a bit discouraging, but I'm going to buck-up and do my best for the next month and see what happens. That's about all I can do, and I'll give it my best shot. And thanks to you (and mar) for the compliment on my sig. I love it, too.

How frustrating -- seems like it's always 2 steps forward, 1 step back, doesn't it? You might want to watch cpapauction.com for data-capable machines if you don't get anywhere with the insurance company

Yeah, frustrating about covers it. I'll definitely keep an eye on the auction if I have to purchase a machine on my own. Thanks.

I'm sorry about the doctor. Get the detailed results from her and your prescription (I know, easier said than done, even though you are entitled to them)...then you can get your machine from CPAP.com if you want to give a different one a try.

And how could she really go over your test results in detail, over the phone?

Thanks, mar. Yes, I'll get a copy of my sleep study and the new scrip. (All I know right now is she's writing one for a new chinstrap, but I hope she'll write one for a new machine, too). Even if she doesn't feel a data-capable machine is necessary in my case, I'll ask for a scrip for one so I can buy it myself. And if for some reason she won't write one, I'll ask my PCP to do so. I'll get there, one way or another.

She didn't go over anything in real detail over the phone; just the basics. I'll get the details when I see her in July.

I wonder if she is friendlier with your 1st doc more than previously thought.

Could be. The medical community is pretty small, especially this branch of it.

As already mentioned, you are entitled to a copy of your PSG and the prescription even before your appt. I would make a written request NOW, in case she decides to make you wait, again. Do not delay.

She hasn't made me wait for anything yet. Whether I get a copy of the study now or in July, when I see her, doesn't matter to me. I'll get a copy.

As much as I hate to say this, this is an example why you need to insist your 1st machine is data capable. And for newbies researching, do NOT take stories about replacing machines later or they pull stuff like this. Remember promises are made to be broken. You may have to read Bleepings other posts to fully understand how this started out.

Preach on, Gumby! The newbies need to know how this process works so they don't get caught up in it with no alternatives.

To me, this is NOT professional behavior I would like in MY sleep doctor, or nurse or RT or ANY of my docs or staff. In fact, this makes the VA look & sound good. WOW.

You lost me there, Gumby. I had issues with my ex-sleep doc and his staff. His Clinical Director was definitely unprofessional, as far as I'm concerned. Is that what you're referring to?

Paying out of pocket may be your only choice at this point. But you will still need the PSG and script to help you understand what is going on.

Good Luck

Agreed. And thanks. I need all the luck I can get these days...

[Slinky]

Your script doesn't have to say anymore than a CPAP and a pressure. That will be good enough for anything from a bare bone CPAP like you have now to a fully data capable APAP on cpapauction.com or at cpap.com

You don't need a script for a humidifier, mask, hose, etc., etc. online - only w/the local DME suppliers.

[BleepingBeauty]

Your script doesn't have to say anymore than a CPAP and a pressure. That will be good enough for anything from a bare bone CPAP like you have now to a fully data capable APAP on cpapauction.com or at cpap.com

Oh. I wasn't aware of that. I thought I'd need an updated scrip to get a data-capable machine. That's good news, then, because I have my original scrip (which, as it happens, was written for 12cm, not that it matters). Thanks, Slinky! I can start looking for a machine now, in case the new doc or the insurance won't upgrade me.

You don't need a script for a humidifier, mask, hose, etc., etc. online - only w/the local DME suppliers.

Yep, that part I knew about. Thanks!

[lanndi]

this is an example why you need to insist your 1st machine is data capable. And for newbies researching, do NOT take stories about replacing machines later or they pull stuff like this

As a newbie, just want to let you know that I heard this message loud and clear before reading this post. I will not accept anything but data capable machine!!!

[SaltLakeJan]

Aw Beauty, The initial telephone visit didn't go just as you anticipated - Maybe it wasn't as bad as it could have been. You don't know what her mood was - what kind of a day she had . all that stuff that changes the next interaction she has.

You are so quick witted, you can be a mile ahead of her, and she doesn't like dragging behind. Slinky has written good advice to you and to me. She has cautioned me to be diplomatic - don't push too hard. Since you have your old script and she told you that's all you need - You may be home free.

I'm kind of in a reverse position from you. I traded in my Res Med 8 Elite 11, data ready, for a Fisher & Paykel "plane jane" box with superb humidification, but no data. I hated to see my ResMed go, But my new sleep doc, isn't into data. He has promise, (Hopeful) promise to be a good un. So as jnk said, "let him drive the bus for a while." I had help with the decision and I knew it was the right way to go . . for now. I will have to buy a data ready after my sleep test.

I had a disappointment yesterday too, I had to stop cpap originally because of repeat bouts of conjuctivitis. Well the blasted stuff hit me again. The internist called it a massive allergic conjuctivitis - he put me on pregnisone - which he said would upset my sleep, it has. Do unpleasant things to my diabetes, it has. My sleep study is on June 9the, so I am worried that the strange effects of this prescription may carry over.

You may find a different doctor in July when you met with her personally :lola: :lola: Don't get down too soon, you haven't begun to show how good you are.... Best of everything, & I'm pullin' for you. Jan

[SaltLakeJan]

Hi BB:

Saw you have a birthday coming up and I wanted to wish wonderful things for you. A prescription for the Data Capable machine. The right level of pressure, and endless supply of spunk. And I celebrate the return of your Atavar. It is so you, in charge, and a little big zany. Also your motto says it all. I came, I liked what I saw!! and I'm staying.!!!
!!!!!

What an addition you are. Happy Birthday JJJJJJJJJJan.

[Yoda]

Dear BB,
I learned from this forum that cpap.com matches prices. Shop everywhere, then you can buy from cpap.com. I did that recently. I got the best price and then bought from the company that sponsors this wonderful forum. (Thanks to all who post - I have learned so much!)

[2flamingos]

BB- Sorry to hear about your disappointment after having been sooo optimistic after your first meeting with the new doc. But I have to say, sounda like you are taking everything in stride, and then taking control - not that I would expect anything less from you! Give 'em hell honey!

If I don;t get to chat with you on your b'day - have a happy one! I think you know what by birthday wish for you is. lol

2

[BleepingBeauty]

Aw Beauty, The initial telephone visit didn't go just as you anticipated - Maybe it wasn't as bad as it could have been. You don't know what her mood was - what kind of a day she had . all that stuff that changes the next interaction she has.

Hi, Jan. The telephone call definitely wasn't as bad as it could have been; worst-case scenario would have been her coming across to me like the CD at my ex-doc's office did. It was nowhere near that level. The only thing about the phone call that was disappointing was her statement about patients relying too heavily on their data. From where I stand, what else is there to rely on? I've been floundering around at different pressures that were prescribed by my previous doctor, but I'm still not getting a good night's sleep and don't know why because I can't monitor my own therapy. I can only go by how I feel, and that's not good (literally and figuratively). But you're right; could have just been a bad day for her, for all I know. I'm hopeful that I'll meet the same doctor in July that I encountered a month ago, the one who wants her patients to be involved in their therapy.

You are so quick witted, you can be a mile ahead of her, and she doesn't like dragging behind. Slinky has written good advice to you and to me. She has cautioned me to be diplomatic - don't push too hard. Since you have your old script and she told you that's all you need - You may be home free.

Thanks. As tired as I am most of the time, I can still come up with a good comeback now and then. When I met this doc a month ago, she struck me as extremely sharp, so she likely has a good sense of humor, too.

Yes, Slinky certainly is on the ball, and I appreciate her advice. I can buy any autopap I want with the scrip I already have, so yes, that's a load off my mind. The only issue is finding the money for it, but I'll figure that out.

I'm kind of in a reverse position from you. I traded in my Res Med 8 Elite 11, data ready, for a Fisher & Paykel "plane jane" box with superb humidification, but no data. I hated to see my ResMed go, But my new sleep doc, isn't into data. He has promise, (Hopeful) promise to be a good un. So as jnk said, "let him drive the bus for a while." I had help with the decision and I knew it was the right way to go . . for now. I will have to buy a data ready after my sleep test.

I kinda feel the same way about my new doc, considering my first impressions of her. I told her I'm in her hands and I'll do what she tells me to do. But in the end, it's our therapy and our health that's at stake here and, as good as I think my doctor is, neither of us is currently able to monitor my sleep every night.

I had a disappointment yesterday too, I had to stop cpap originally because of repeat bouts of conjuctivitis. Well the blasted stuff hit me again. The internist called it a massive allergic conjuctivitis - he put me on pregnisone - which he said would upset my sleep, it has. Do unpleasant things to my diabetes, it has. My sleep study is on June 9the, so I am worried that the strange effects of this prescription may carry over.

I'm so sorry to hear that, Jan. I'll cross my fingers that the prednisone is out of your system early enough that it doesn't interfere with your sleep study. I know how anxious we all are to get these studies done asap, but is it possible you could push it back a few days, if need be?

You may find a different doctor in July when you met with her personally :lola: :lola: Don't get down too soon, you haven't begun to show how good you are.... Best of everything, & I'm pullin' for you. Jan

Thanks, Jan. I'll get a much better feel for this doctor when I meet with her again. In the meantime, I'll keep pluggin' along, doing what I'm told, hoping for a better night's sleep. I'm still happy about switching doctors, and I'll do my best to stay optimistic. Knowing I can buy a machine with the scrip I already have is a big relief, so that helps.

The worst-case scenario really isn't that bad. If I ultimately have to "go it alone" with my therapy, I have all of the great people at this site to help me along and rely on when I have a problem. That fact alone helps me sleep easier.

Best wishes to you, too, Jan. I consider myself lucky, compared to good people like you and mar, who've had so much more to deal with physically than I have. You guys are real troopers, and I admire and salute you for your perseverance.

[BleepingBeauty]

Dear BB,
I learned from this forum that cpap.com matches prices. Shop everywhere, then you can buy from cpap.com. I did that recently. I got the best price and then bought from the company that sponsors this wonderful forum. (Thanks to all who post - I have learned so much!)

Thanks, Yoda. I'm aware of that, too, thanks to the reading I've done here. Seems to me, though, that cpapauction.com would still be cheaper than any online or retail outfit and, in this terrible economy, every penny counts. Still, it's good to know that cpap.com will price-match.