what the...........

[BarBe]

weeeellllll, we're back from the visit to the sleepdoc.
What a joke When we first got to the hospital we were seen by the assistant of the doc.
He started whaffling on about shortness of breath, no energy , chronic fatigue blah,blah,blah all the things that we had been to see them for the year before. Then he started on about having a sleep study done......
when he was told B had had the sleep study done and had been using a CPAP machine for 4 1/2 months ,
he was a bit speechless for awhile and then the big OH.
So of he went to fetch the actual sleep doc, who makes his apperarance with ' what are you doing here?'
Duh, hello......you told us to make an appoinment to come here.
So, to make them both even more flustered , when he was offered a look at the file of reports he was dumb founded and amazed that I , a mere female, was able to do reports for him to see
He kept on and on about the wonderful job I had done with the reports and he should get me a job in their
lab ( oh pleeeeeeeease )
Then he wrecked his whole suck up story with " I'll get you to see our tech and she can explain to you about pressures and different masks" etc.... ( we've just be using the machine for 4 1/2 months and B was feeling much better but now I need lessons.)
The 'lady' expert then opened her mouth and out it came.
'It's really good to see people that are so enthusiastic about their therapy BUT you shouldn't change the pressures yourself you should leave it to the experts ( ) and (here's the best bit)
even though you have an auto machine you should leave it at min 4 - max 20 as the machine will know when you need a higher pressure. As for the Ramp it's a wasted feature on the Auto as it doesn't do anything'.
When I told her about the great help I had received from the wonderful folks on the forum she dismissed it with ' the forums are full of people that are very negative and don't know what they're talking about'.
Hah,what a bundle of knowledge she was. Not. ( didn't make my Christmas card list!)
This from a person who didn't even know how to recover the data from a smartcard.
Anyway, then we're joined by the sleep doc who asked if she had checked the machine. Well, when I told him the I hadn't brought the machine with us he said " but we need to check the pressures of the machine to make sure that the pressure is actually what it says it is". ( on a new machine )
Apart from that B is doing a heck of a lot better than the last time he saw him 9 months ago, so even if the machine is faulty , it's working pretty good for B.
what a dumb reason to get their grubby mitts on a good machine that we fully paid for.
So, now they want us to go back in 3 months ( for what?) After our protest , changed it to 6 months ( but still, to do what?) We really need to pay for a rail ticket, 2 night's accomodation, food, taxis etc for him
to say again ' what are you doing here?'. don't think so!
CAN'T WAIT TO DO THIS WITHOUT THEM!
So, looks like you're stuck with me.
Bev

[Snoredog]

if you don't go back they cannot put it down and get paid by your insurance for those visits, it is how they keep their reoccurring revenue coming in, get a couple hundred patients coming in regularly and you have a pretty good racket going. Good thing you didn't take your machine in, they would have probably taken it and given you a plain jane cpap.

[lovey]

But what is the line that you need to keep them involved anyway? If everything is going okay, how much do we need to meet insurance requirements that the doctors are involved in our care enough to prescribe when needed?

I haven't figured it out yet. Any suggestions/info?? And it's been 2 1/2 years on pap therapy... Lovey

[echo]

Bev, glad to hear B's doing so well, and as for the story... well snoredog's right!
I also bought my own machine (instead of renting it from them), and because of this i'm "officially outside of their system", so they told me to just call and schedule an appoitnment once a year anyway so they could "check up on me." I went in a few months early (a few weeks ago), complaining that I still wasn't sleeping very well. But since my AHI was so low, they said there's not much they could do for me. So the moral of the story is, if there's not actually being helpful, then why do we need to give them our money? That said, there are good sleep doctors out there (somewhere in the twilight zone).....

Lovely - nice avatar Your spirits MUST be better

[DreamStalker]

When I had my annual visit back in 2007, I had told my PCP that I was doing great with my therapy and didin't need to see the sleep doc. He told me I should go anyway to make sure the sleep doc could check that off the list and keep my records up to date and also so I could continue to get CPAP supplies.

So I went. Got there and the chief nurse comes in and goes down a list of questions. Then she too says I should not be making changes to the machine cuz its dangerous ... then asks to see my machine so she can check to make sure the settings are ok. I tell her I didn't bring it and she gave an evil look. So then she says ok well thats it wer'e all done you can go now. So I ask what about the doctor, don't I need to speak with him? She says no ... since your doing so well, I'll right up the report and have him take a look at and he can contact you if he needs to.

About a week later my PCP mails me a copy of the sleep doc report and it said, patient appears to be doing fine with his treatment. He was told not to make anymore adjustments to his CPAP. He will be re-evaluated in 1 year. That is what I paid a specialist $30 co-pay for and who knows how much the insurance paid

T
Earlier this year, they sent me and my PCP doc a notice that it was time for my 2 annual visit. I told my PCP what had happened the previous year and that I thought it was a big waste of money since I didn't even get to see the sleep doc. He agreed and I guess the sleep clinic is still waiting for me to make an appointment.

[ozij]

It takes truly stupid person to tell you that:
1. "even though you have an auto machine you should leave it at min 4 - max 20 as the machine will know when you need a higher pressure"
AND
2. " but we need to check the pressures of the machine to make sure that the pressure is actually what it says it is"

And since this were the RT and the Doc as a team, - I would definitely avoid this clinic in the future.

Looks like you're stuck with us, Bev,a forum "full of people that are very negative and don't know what they're talking about"

Lord, how terrible for you!!!

O.

[echo]

Looks like you're stuck with us, Bev,a forum "full of people that are very negative and don't know what they're talking about"

Why don't you call it like it is, we're all just a bunch o' burning-in-hell dial wingers

Bev, glad you didn't give up on us sinners Do we ALL get x-mas cards from you?

[georgepds]

It takes truly stupid person to tell you that:
1. "even though you have an auto machine you should leave it at min 4 - max 20 as the machine will know when you need a higher pressure"

2. " but we need to check the pressures of the machine to make sure that the pressure is actually what it says it is"

O.

Newbie here, I'll bite... why is it stupid?

The drift I get is that if you feel well, then it's OK, but if it is more than that, please let me know.

[carbonman]

a forum "full of people that are very negative and don't know what they're talking about" O.

If memory serves, the correct term, fashioned by the Certified RT, with 20 years experience,
was......

yahoo's.

I'm a yahoo,
you're a yahoo,

Sisters & Brothers of the Yahoo Hoserhood.

[kteague]

georgepds - A blanket 4-20 range is not best for everyone. Many cannot breathe at a pressure of 4, and even if they are, one needs to be sure the mask they are using will vent properly at that pressure (they all have minimum pressures). Also, those with a higher titrated pressure may be best served with a higher minimum pressure. The pressure rises incrementally, and someone who needs a pressure of 14, for instance, would have a long climb to prevent or resolve an apnea.

I count my blessings that I have a sleep doctor that I don't feel my visits are wasted, but I'm being treated for other sleep issues also. She communicates very directly and I don't have to deal with the frustration of feeling I know more than she does - she's sharp. I've 'been there done that' with the one that was a waste of time and money. But I should be thankful this Thanksgiving season. If it weren't for the unhelpful doc I wouldn't have found my way here and got my cpap treatment on track or found my current doctor. It's that silver lining thing again.

[ozij]

It takes truly stupid person to tell you that:
1. "even though you have an auto machine you should leave it at min 4 - max 20 as the machine will know when you need a higher pressure"

2. " but we need to check the pressures of the machine to make sure that the pressure is actually what it says it is"

O.

Newbie here, I'll bite... why is it stupid?

The drift I get is that if you feel well, then it's OK, but if it is more than that, please let me know.

The combination of those two statements is stupid, because:
With the pressure self adjusted between 4-20, as per the RTs recommendation, the "actually" vs. "reported" pressure is irrelevant; self adjustment is not affected by a "reported" vs. "actual" discrepancy (aka a miscalibration).

The validity of the pressure reading is only important if
1. You want to set up another machine with a fixed pressure based on the present machines reading. In that case, you may be in error if the machine is miscalibrated.

2. You assume the machine is malfunctioning, and will supply pressure that is either much too high or much too low. That's malfunction though, not miscalibration. I would say that chances that in a new machine with a wide open range -

miscalibration

will cause too much pressure at the minimum, or too little at the maximum are close nil. Do I know that for a fact? No.

Can a machine malfunction? Yes. Can a machine stop supplying the correct set pressure? Yes. Is miscalibration a reasonable assumption for a new machine, used by a person who is feeling better and better? No.

4-20 it not a good idea for the reason's Kathy explained. Not knowing that is "lack of sufficient knowledge" - but I don't consider lack of sufficient knowledge to be stupidity. I know I was very very ignorant when I first came to the forum - I've learned a lot since.

And you learn a lot by asking - congratulations for biting, George!
O.

[DreamStalker]

And to add to Kathy's explanation ... 4-20 is such a wide spread that the change in pressures all night long are likely to keep you out of REM sleep just as much as untreated apnea. Auto-adjustments work best when they are tweaked to the individual's unique needs and everyone is different.

[georgepds]

Thank you to one and all who answered my newbie question

--G

[grandmma]

Our system is different in Australia, we don't have DMEs, just (theoretically trained) sleep centres & sleep specialists (doctors).

I decided once I'd gotten the hang of the therapy & used this forum for some months, that I'd get hold of a card reader and software & never go back. And other than to drop in for replacement filters, I haven't. If need be I can tweak my pressure on my own, without lectures, thank you very much.

Don't need them, don't want them. And paying the specialist $240 for a 12 minute consultation, of which I received $110 back? "We have to book a 45 minute consultation, just in case". Good job if you can find enough suckers! And guess what, I don't need you. Fool me once.....

This forum is far more efficient, experienced, and (once you get used to the......reverse assistance? shock therapy? methods employed some) warm and fuzzy too!

[echo]

This forum is far more efficient, experienced, and (once you get used to the......reverse assistance? shock therapy? methods employed some) warm and fuzzy too!

Gradmma, everyone should know by now those are warm fuzzy 2x4's inciting people into action (you're mouthbreathing?....whack whack whack tape your mouth. Don't like CPAP yet?....you're in DeNile whack whack whack thwap )

We have the same system here in parts of Europe - you get what the hospital gives you. I also went online for my equipment and I'm glad I did.

I especially liked my sleep doc's comment on the (non) usefuless of APAPs : their theory was that APAPs are useless because they don't respond fast enough to stop an apnea. Well that is somewhat true, but the idea is that you set the minimum pressure so that it eliminates most or all of your apnea's (and other events?), and let it catch the snores and hypopnea's that could develop into apnea's. So APAPs are completely useless, and I learned that on this forum.