Need new doc in Louisville

bitbangr · Post by **bitbangr** » Thu Mar 27, 2008 12:43 pm

Hi all,
I've been on CPAP since January and had what I would call mild improvements. My major symptoms prior to CPAP were that I snored and woke up many times during the night. The snoring has stopped, but I am still waking up at least 3-4 times/night, sometimes more. I have gained flatulence and burping which I attribute to aerophagia.

I am in a mode of trying to solve the rest of this puzzle. I already figured out my 4AM wakeup as being the temperature in the room rising due to the furnace kicking on around that time. Other wakings are still occurring, so as an engineer, I WANT DATA! I slept horribly during my two sleep studies, so I regard them as nearly useless for gathering accurate data. I really think I need a machine that will tell me what went on when during the night, but my F&P HC604 just tells how long it was on.

With this in mind, I returned to my Dr. for the follow-up after getting my machine. He proceeded to either not listen to my concerns or dismiss them. He also revealed that the sleep study (done in december) revealed RLS and that I should try some Requip for that--first I'd heard about it (and no, I'll not be taking a drug for Parkinson's disease to stop my legs moving).

In short, I need someone willing to work WITH me to figure this out on my own terms.

Anybody know someone with that sort of attitude around here?

Thanks for listening.

rested gal · Post by **rested gal** » Thu Mar 27, 2008 1:35 pm

Hi bitbangr, and welcome to the board!

If you don't already have a copy of it yourself, get a copy of your "cpap" prescription from the doctor.

Armed with that prescription, with the word "cpap" on it, you can buy any cpap or autopap machine you want, from the online store, cpap.com -- if you're willing/able to buy it out of your own pocket.

The prescription doesn't have to say "autopap" for you to buy an autopap from cpap.com
The machines come with all printed material in them... User manual AND Provider Manual (or Provider Setup Instructions.)

I'd suggest buying either of these machines, either of which can be operated in straight cpap mode if it turns out that's better for you than "auto-titrating" (machine automatically varying the pressure as needed throughout the night):

________________________________

If you don't have any problem breathing out against your current pressure:

Puritan Bennett Goodknight 420E (autopap)
Silverlining software (comes with a download cable)
If your computer doesn't have a serial port, you'll need a serial-to-USB adapter.

The Silverlining software gives extremely detailed data and has a great "96 hour" graph that lets you see approximately two weeks worth of sleep sessions, side by side.

________________________________

If you do have difficulty breathing out against your current pressure:

Respironics REMstar Auto with A-flex M series (autopap)
Encore Viewer software and DT3500 card reader

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I personally would NOT get the integrated humidifier for any machine -- especially not for an M series machine. Instead, I'd get the Fisher & Paykel HC 150 heated humidifier. It has a short connector hose that allows you to use it with any make/model machine. Much better humidifier (imho) than the sometimes leaky, smaller capacity M series humidifier.

bitbangr, once you have a machine that can give you useful data, you can handle your own "cpap" treatment while taking your time looking for another doctor in your area.

I've been to Louisville many times (horse shows and dog shows at the Expo Center) but know nothing about doctors there. Good luck!!

RipVW · Post by **RipVW** » Thu Mar 27, 2008 1:45 pm

Hello & Welcome, bitbangr! Glad you found this forum--SO much useful info and SO many helpful people here!

Ditto to each of RG's suggestions!

"You are getting sleepy . . ."

rested gal · Post by **rested gal** » Thu Mar 27, 2008 2:23 pm

Oh..I should add this important P.S.

For anyone thinking about buying Respironics or Fisher & Paykel products... those manufacturers will be making the online stores raise the minimum advertised price for their products...a LOT.

MAP -- Respironics "Minimum Advertised Prices" after March 31, 2008

viewtopic.php?t=29069

bitbangr · Post by **bitbangr** » Fri Mar 28, 2008 8:03 am

RG,
Thanks for the reply!

So how do you transport those separate devices when travelling? Some sort of custom case? Or do you have a different machine for travel?

Also, cpap.com says not to use the FP 150 with the GK 420E because of the way its flow sensing works.

Thanks,
Richard

_________________

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

rested gal · Post by **rested gal** » Fri Mar 28, 2008 12:29 pm

bitbangr wrote:Also, cpap.com says not to use the FP 150 with the GK 420E because of the way its flow sensing works.

I think whoever told you that was giving poor advice.

The Puritan Bennett Goodknight 420E was my first autopap. I always used the 420E autopap (and still use it on occasions) with a Fisher & Paykel HC 150 heated humidifier. No problem.

The 420E uses a separate narrow diameter tube, running down inside the main air hose, to sense air flow. That separate tube does not go through the humidifier at all. The 420E's separate sensor line bypasses the humidifier completely and plugs into a tiny hole on the front of the 420E itself.

rested gal · Post by **rested gal** » Fri Mar 28, 2008 12:44 pm

bitbangr wrote:So how do you transport those separate devices when travelling? Some sort of custom case?

Nah, I don't use a custom case, unless one considers the carry bag that cpaps come with, a "custom case." They are just a slightly padded bag, sometimes with a pocket or two. There's nothing particularly special about them.

I have several older "cpap" bags that are much bigger than what comes with the machines now. The older bags easily hold the 420E and it's power brick, the F&P humidifier, a mask, the air hose, power plug and a few other items.

For air travel you could use any kind of bag that met carry-on size limits. Doesn't have to be the manufacturer's bag. The cpap, humidifier, mask, etc., could be in a backpack or any "carry on" size bag. The extra bag for the cpap, whether it's the manufacturer's bag or a different kind of bag, doesn't count toward the "one carry on bag" limit. Which means you can tote two carry-on bags on board....your usual carry-on, and a second carry-on with your medical (cpap) stuff in it.

Since the humidifier is not "as necessary" (if luggage were to get lost or delayed) as the machine, hose and mask are, I've sometimes carried only the machine/hose/mask/ on board, and simply packed the humidifier in my checked luggage. Clothing around it pads it fine.

Guest · Post by **Guest** » Fri Mar 28, 2008 7:35 pm

What about my question about the GoodKnight and the humidifier?

Thanks
Richard

bitbangr · Post by **bitbangr** » Sun Mar 30, 2008 10:17 pm

OOPS! Missed the humidifier answer.

Actually it was cpap.com's page on the humidifier that says it's not compatible. Sounds like a great humidifier, though.

Thanks for your help. Someone PMed me a recommendation, so I'll be following up on that. If it doesn't work out, I have your suggestions to fall back on.

Richard