Abt to embark on treatment; 1st appt. w/ Dr. tmrw. Advice?

Snoredog · Post by **Snoredog** » Fri Jan 05, 2007 10:26 pm

the most important things to get?

1. Getting a copy of your PSG report, it should come from the Sleep Lab on their letterhead (your doctor has a copy of it, they should give you a copy as well, just as it came from the sleep lab, should be several pages long).

2. If a Prescription for cpap is indicated, get a hardcopy of the prescription, you should keep the original and give only a copy to the DME.

Linda3032 · Post by **Linda3032** » Fri Jan 05, 2007 10:27 pm

And there should be no reason for you to "have to go the self pay route". Your doctor and DME should provide you with a machine of moderate technology - instead of an entry level one.

(sorry, just my opinion)

kcarter · Post by **kcarter** » Sat Jan 06, 2007 7:06 am

My doc did give me a copy of the summary of the report after going over the full report with me in a fair amount of detail. He also gave me a copy of my prescription and applauded me for taking notes during the appointment and for coming to the appt. already informed.

The rationale for his approach: his clinical experience tells him the chief reason for early failure is the inability of a patient to get comfortable with the huge physical change in their life... primarily mask discomfort and/or leakage, etc. He wants me to keep my focus simple... make the mask my friend if possible... we took a lot of time with mask selection in his office so he could specifiy the one that seemed to have the best chance and he encouraged me to call them for help in choosing alternatives if I had problems... his nurse practitioner offered to help with any "lab-ratting" we might need to do for creative mask alterations. All this with the emphasis on mask comfort and acclimation. He wants to do a titration study, but after I've acclimated to my mask successfully so that the study can be done with "my" mask. He feels titration studies done with masks unfamiliar to the patient can give questionable results. After the study we'll discuss more machine options if i'm still into it. I assured him I would be. He laughed and said, "okay, but please try my approach at first because I've had a lot of success with it for a long time..."

I have to say, so far, all the time and focus on mask selection seems to have paid off. Just finished my second night... 8.4 hours of uninterrupted sleep after 8.3 my first night. Believe me, I have no idea how long it's been since I experienced that.

I'm still going to get at least a Pro series, and an auto if I feel I need it, but I bet I'm going to get there in partnership with the doc (and paid for by insurance) and I would prefer that outcome. But, if for some reason he won't go along, I've got my prescription and I've got cpap.com at the top of my bookmarks.

i may have been somewhat lucky in my first couple of nights, but I think luck comes to those who are prepared. The only reason I was remotely prepared is the time all of you take to read and post on this site.

Thanks again to all who post.

oldgearhead · Post by **oldgearhead** » Sat Jan 06, 2007 8:07 am

All this with the emphasis on mask comfort and acclimation

Your doctor's approach is refreshing. Mabe some of the sleep doctors are
starting to "get it" : "Its the mask acclimation, dummy"!

I've found the sleep NPs are very important to sucess.

Congrats on your great start.

snoregirl · Post by **snoregirl** » Sat Jan 06, 2007 9:57 am

What I don't get is how your doc could set you up with a Plus machine and a pressure (much lower than mine) without a titration study? Heck, with that model there isn't even any data he can look at to see if the machine is doing anything for you.

If you don't have a titration study, I would think an auto - at least as a loaner would be in order.

If someone had just set me up with a machine set at 7 or 8 NOTHING would have happened. I was titrated at 13 and my APAP verifies that. How does your doc justify you getting used to a machine and mask at a pressure just picked out of the air??

He doesn't seem all that "with it" to me.

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CPAPopedia Keywords Contained In This Post (Click For Definition): Titration, auto

kcarter · Post by **kcarter** » Sat Jan 06, 2007 10:49 am

I did ask about that snoregirl. I guess his response could be boiled down to this: (not an exact quote) he'd rather get the mask right first. He feels strongly that he's seen many more people struggle (or give up) over mask issues than over adjustments to their pressure. And yes, the pressure was a guesstimate, but an informed one based on my initial study. He felt confident I was going to experience some relief at that pressure and emphasized that I should call the NP if I felt no difference (or a negative difference) in my energy level and overall sleep experience.

I totally get the logic of what you're saying and do respect and appreciate your experience with this, and I probably would be feeling less patient with his approach if I hadn't gotten off to what I consider to be a pretty great start. Guestimate or no, the pressure has made a difference to me, a signifcant one. And I simply have had no problems whatsoever with mask discomfort. I will say, I want that data and I'm going to get it, but I don't mind showing the doc some respect for the years of clinical experience that have informed his approach, especially since his approach is helping already. Again, my goal is to feel better and get better. The feel better part is already working.

snoregirl · Post by **snoregirl** » Sat Jan 06, 2007 12:35 pm

You have more patience and trust than I do.

My issues (if it were me) would be

1) not all people have mask issues (I didn't and obviously you don't so lets get going with the correct thing and deal with mask issues if and when they occur.

Also, mask issues can be very different at different pressures. Just because you like this mask at 7 does NOT mean it will work for you at much higher pressures if you should need them. Then you migh own a mask that doesn't work.

2) If one is willing to get you going on a machine right away and assuming this is how he does all or at least most of his patients, why not the right machine, either an APAP or at least a data recording machine where he can have your card read after a week and make some real decisions.

3) I know of no way he could make an informed guess without a titration study. I just don't know of anything he could have learned in the original study or in his experience with others that would lead him to believe that for you as an individual should be helped by a pressure of 7. Total guesswork with your health.

4) Who knows if he really will move you over to a data recording machine or just give you lip service at a later date (I know I am very cynical). But it is your money and your therapy.

I just can't see the value in what he is doing other than creating additional office visits $$

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CPAPopedia Keywords Contained In This Post (Click For Definition): APAP

Linda3032 · Post by **Linda3032** » Sat Jan 06, 2007 1:09 pm

Ken, as long as you are comfortable with your relationship with your doctor, that is the important thing. You know enough about sleep apnea and machines at this point to know if he is pulling your leg.

So if this is the direction he is taking:

1. Getting a titration study once you can tolerate a mask. Is it scheduled yet?

2. Setting you up with a "good" machine, whether it be a M Pro or an M Auto (the auto is what I would want).

3. Giving you a complete titration report and a prescription/order for a machine.

Then it sounds as if you are on the correct road (albeit in a little different order than what usually happens).

I would certainly hate for you to hit a brick wall when it comes time for you to get switched out with a decent machine as there is no reason that you should have to resort to buying out of pocket.

Good luck and continued good sleep.

sleepyWI · Post by **sleepyWI** » Sun Jan 07, 2007 7:44 am

I agree the Dr's approach is refressing. When you go in for your titration you will not be cpap naive as I was and will have no trouble tolerating the titration. To me it was so foriegn and strange...the mask...the gale blowing in my face...feeling like I was soffocating....and I had to lay there and try to sleep. If I had a few nights on a cpap beforehand I think my sleep study would have gone better. As it is I have no confidence in the outcome of mine and further my Doctor seems to resent that fact that I had been doing research. Mine seems to be of the old school...the less the patient knows the better.

elliejose · Post by **elliejose** » Sun Jan 07, 2007 8:27 am

When is your titration study? IMHO, auto would have been logical with no study. I was prescribed 7 about 15 yrs ago, because I had no insurance for a study. MD said that was an average pressure. 2 years ago, I finally had a study done and my pressure was 15. When I did not feel a lot better at this, the MD put me on auto to see if 15 at home still averaged to be my pressure. I rested SOOO much better on the auto, -- (as did my DH) -- and told him so, so he prescribed an auto for me. However, due to rising pressure in the early a.m., I now have an auto bipap, and I would recommend, if at all possible, to try to get an auto bipap. There is a world of difference in the comfort level of a regular cpap and an auto bipap (at least at higher pressures.) Even a regular bipap is better that cpap.
Rested Gal's advice is ALWAYS great!
GOOD LUCK to you, whatever mask and machine you are prescribed. Keep us posted!

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CPAPopedia Keywords Contained In This Post (Click For Definition): bipap, Titration, CPAP, auto

kcarter · Post by **kcarter** » Sun Jan 07, 2007 8:28 am

Again, thanks everyone for the thoughts.

To snoregirl: how does one decide if a doc is trying to set up too many office visits? how many is too many? how many is not enough? Would I feel better if he followed a simpler script, handed me an auto machine and told me to read my own data and call him in a year? I certainly would have a machine that would fit the consensus better, but would I feel I had a doc that was engaged? I don't think any formulaic approach is a good one... success comes from being enganged, actively, in a process. For me, that process is going to have to include detailed data capability and I would like that now. However, I also want that process to include a doc with tons of clinical experience and so I'm going to stay engaged with this doc as long as I don't hit a wall in terms of progressing in a positive direction, either with my actual sleep outcome (which continues to be very good) or with our machine/data conversation.

You acknowledge some cynicism on your part and I bet it's been well-earned with some frustrating to downright degrading experiences with the medical "industry." I've had my share of those, too and don't blame anyone for approaching practitioners with a jaundiced eye. Having said that, I do try to keep an "innocent until proven guilty" approach and use some patience. I've apparently had untreated apnea for a very long time, so I'm willing to experiment a bit with this initial process. It may be only luck that has yielded such positive results for me so far... or maybe, just maybe this doc's experience has had a role in my success. I'm not going to rule out the latter until I have a solid reason to do so.

Re the "guessing with my health"... well, technically yes, he is. You and I don't know what he could base his "guess" on, but he is asking that I allow for his years of experience with thousands of patients to count for something. This is not the first time in my life to be asked to trust a doc's experience. My wife and I faced fertility problems that had seen us go 10 years of marriage with few pregnancies and when the pregnancies finally started happening, three straight miscarriages. We ended up with a doc with a bedside manner that could be euphemistically described as "curt", a practice that was overflowing, very frequent office visits (was he churning $?) and ultimately a couple of crisis points where he made choices based, not on the "book", but on his instincts. And we made the call to go with his instincts based on our own instincts. The result: our first born miracle, high risk all the way, premature but healthy as a horse boy, now 10.

This is all just a long-winded way of saying, numbers and procedures and best-practices are important, but in the end I do believe there's a place for human choices based on trust and instinct. In fact, medicine, like any other science, only moves forward in understanding when someone has an insight, something that also be described as a guess.

But that doesn't mean I'm not going to keep posting and reading here, and looking over my doc's shoulder and asking him questions; but as long as he'll engage, and address my requests and as long as I'm sleeping well and continuing to feel better, I'm going to hang in there with the process.

Thanks for caring and for being engaged in the "process" that is this forum.

kcarter · Post by **kcarter** » Sun Jan 07, 2007 8:48 am

And to Linda and elliejose, yes, we have a titration study scheduled in a couple of weeks (a few days less than that now), but I'm going to find out if he'll move that up given the fact that I've acclimated so well to the mask, etc.

By the way, I did wake up once last night... stirred by some weird, otheworldly vivid images and scenes running through my head that my son told me was called a "dreem" (sp?) !!

Sleepless in St. Louis · Post by **Sleepless in St. Louis** » Sun Jan 07, 2007 9:21 am

I think you're taking the right approach with this. You're luckier than most of us in that you seem to have a doctor that will work with you. His process seems a little dif than most of us are used to. The complaining some are doing is funny to me since many times you hear "I wish these sleep pros would do things differently than they do". Yours is and still the complaining which is typical on any internet forum as you prob know. As long as you are happy with your progress and are comfortable, then that's what really counts to me. You seem like a logical, methodical person so I'm betting that you'll end up exactly where you need to be one way or another.

snoregirl · Post by **snoregirl** » Sun Jan 07, 2007 9:31 am

"the complaining few" -- I asume that means me only really wants one thing done differently (the rest is speculation and watch out advice, cynical I agree but real-world for lots of us)

Set up patient with Auto rather than some mythical pressure of 7

Other than that I don't have any issues with the method as long as the patient is not hauled in to the office for many office visits ($$ and time) that are not required or ultimately told that all he can have is a basic, no data machine.

The difference between the cpap issued and an auto is trivial ($200), especially if the machine is a loaner and can be issued again and again and again.

Sleepless in St. Louis · Post by **Sleepless in St. Louis** » Sun Jan 07, 2007 9:35 am

Was not meaning to pick on you specifically snoregirl but if you want to take credit...

I can't disagree with you. My feeling is that this new cpaper will get where he needs to be pretty quickly. He already has us to help and the right attitude and and a seemingly good doc on top of that. Sounds like a winning combo if you ask me.