What to expect AFTER the CPAP titration?

KCDC · Post by **KCDC** » Sun Jun 01, 2014 5:11 pm

Hello all, I'm a newbie and thank you so much for letting me join this forum. already read tons of useful stuff. One thing I couldn't find was how was it procedurally for you guys from the last CPAP titration sleep study to actually getting your CPAP machine?

I went for my first sleep study because I've been soooo fatigued where it has been debilitating. We tried this medication, and that, but long story short, I went in and they diagnosed me with moderate sleep disorder primarily in the form of hypopnea.

I went in again for titration and after that, the techs are not allowed to tell me anything, but i did feel a slight boost of energy during the day. The problem with Dr.s here in the US these days, especially in a place like Washington, DC, is that I can't even see the doc for the results for another 3 weeks. He's just that busy. The receptionists and nurses these days mostly don't give a crap about you. They are rude and you never get to reach the doctor.

I was just trying to draw your experiences as to what do I do now? Just wait for 3 weeks till I see the doctor? Then he writes the prescription for the CPAP and then what? Wait another few weeks to get it. Then come in another week to learn how to put it together and use it? I'm just guessing on all of this.

The diagnosis is very obvious. The doc looked in my mouth and said I had a lower palette than most. Probably hereditary because I'm kinda young to have it and not overweight. I just don't see why they can't order it first, then by the time I get there for the appointment, he has it ready to give it to me and I can start using it.

Please share your experiences on actually getting the machine after the study.

Greatly appreciated!!

Kenny

avi123 · Post by **avi123** » Sun Jun 01, 2014 5:22 pm

The Latinist · Post by **The Latinist** » Sun Jun 01, 2014 5:29 pm

avi123 wrote:I just read the heading and the first paragraph. The nurse at the office of the Doc who ordered the sleep test needs to call you and tell you the results and also tell you how to proceed.

I was tested on the Thursday before Good Friday. I called Friday afternoon and was told my chart had been flagged priority (my apnea was severe) and the doctor would read it first thing Monday morning. Monday afternoon I called and they told me the doctor was ordering an APAP and I should expect a call from the DME within a day or two. Two days later the DME still claimed not to have received the prescription. The doctor's office kept saying they had sent it but would send it again. Wednesday, I left work early and drove to the doctor's office. I waited there as they resent it and would not leave until I had confirmation from the DME that it had been received. Thursday morning the DME called to set up an appointment. I picked up my machine Friday afternoon and have used it every night since.

You have to advocate for yourself. Be tenacious. Don't give up. It's your health that's at stake.

zoocrewphoto · Post by **zoocrewphoto** » Sun Jun 01, 2014 5:30 pm

It varies. In my case, I made an appointment right after the study to see the doctor in about 2 weeks. The doctor explained my sleep apnea and forwarded my prescription to the DME that I chose. They called me the next day (friday) and made an appointment for me monday morning to pick up my machine. They helped me choose a mask, and showed me how to use it. I found this forum that afternoon.

Other people have gotten their machines at the doctor appointment. The most important thing for YOU is to make sure you know what machines are good and which are not. There is a great blog when will get mentioned here shortly. You will want a machine with full data so that if you have any problems, that data can help with making adjustments.

KCDC · Post by **KCDC** » Sun Jun 01, 2014 9:59 pm

Wow, thank you so much. you guys are so helpful!!!

Well, I was told at the sleep clinic to make the appointment with my doctor that very same day. I did, but his availability is only in 3 weeks. Then I kept calling his office and the bitchy nurse told me that I just had to wait out the 3 weeks, and she has no idea how long the sleep clinic would take to send the report to the doctor. I kept asking her if I could speak to the doctor, she says he leaves him a message, but he has not called. I don't know what to do short of storming into the hospital and demanding to see him.

Any ideas who might be able to get through to them by bypassing that damn nurse?

KCDC · Post by **KCDC** » Sun Jun 01, 2014 10:05 pm

And just for the record, healthcare these days here is crap. Gone are the days where the doctors and nurses actually care. I'm classified as "moderate", so I'm probably not really important to them anyway.

Off topic, like I had a procedure done a while back, and was in pain but nobody would call me back. Luckily, I had a friend from my hometown that is a surgeon. And she told me, just call, and leave a message saying that you aren't able to urinate. within 5 minutes, I got a call back. You see..... perfect example that they listen to the messages but don't care unless you tell them something is life threatening. Who are they to say that moderate is less comfortable to me than someone else and less important to them as someone else.

Sorry, I'm just venting as this really pisses me off.

zoocrewphoto · Post by **zoocrewphoto** » Sun Jun 01, 2014 10:10 pm

KCDC wrote:Wow, thank you so much. you guys are so helpful!!!

Well, I was told at the sleep clinic to make the appointment with my doctor that very same day. I did, but his availability is only in 3 weeks. Then I kept calling his office and the bitchy nurse told me that I just had to wait out the 3 weeks, and she has no idea how long the sleep clinic would take to send the report to the doctor. I kept asking her if I could speak to the doctor, she says he leaves him a message, but he has not called. I don't know what to do short of storming into the hospital and demanding to see him.

Any ideas who might be able to get through to them by bypassing that damn nurse?

Three weeks seems pretty normal. And it is doubtful that anybody is going to give you results over the phone. I was told I had to wait two weeks as the sleep doctor needed to wait for the results from the sleep study and then needed to look it over. A lot of doctors do have a longer wait for appointments, especially if they accept a variety of insurance options, medicare, etc. You will probably just have to wait it out. I know it is frustrating. My two week wait seemed like forever after avoiding a sleep study for 10 years. My sleep study went so well that I wanted my machine so badly that I dreamed about it.

chunkyfrog · Post by **chunkyfrog** » Sun Jun 01, 2014 10:22 pm

My doctor's office uses a voice menu with such a short message time,
I have to drive to the office to convey anything more complex than fifteen seconds worth.
Of course, I bring a written, detailed note; and they handle it right away.
They know their voice menu is useless, but I refuse to suffer until they fix it.
I know I'm lucky it's only a ten minute drive, but everything is here.

Janknitz · Post by **Janknitz** » Sun Jun 01, 2014 11:19 pm

Be sure to read my blog post linked below "What you need to know BEFORE you meet your DME". That's your next step.

bwexler · Post by **bwexler** » Mon Jun 02, 2014 9:36 am

You allready provided your own answer.

I don't know what to do short of storming into the hospital and demanding to see him.

Any ideas who might be able to get through to them by bypassing that damn nurse?

Another question, have you called the sleep clinic and requested a copy of your sleep study COMPLETE report?

How many times a day have you called the doctors office? If less then 5, they are not sure you are serious.

Have you requested to be offered an appointment cancelled by another patient?

I recently had a doctors office call me to postpone my appointment for the third time. I told them NO, postpone someone elses appointment this time. They said OK.

Once my sleep doc told me I needed another sleep study, I had the study, the results and the new PRS1 ASV machine I needed. I followed the advice of a past president, Speak softly but carry a big stick.

The Latinist · Post by **The Latinist** » Mon Jun 02, 2014 11:29 am

Perhaps I was "lucky" that my apnea was so severe: AHI of 96, average SatO2 of 79%, lowest SatO2 60%. The nurse was all over my report.

KCDC · Post by **KCDC** » Mon Jun 02, 2014 3:36 pm

bwexler wrote:You allready provided your own answer.

I don't know what to do short of storming into the hospital and demanding to see him.

Any ideas who might be able to get through to them by bypassing that damn nurse?

Another question, have you called the sleep clinic and requested a copy of your sleep study COMPLETE report?

How many times a day have you called the doctors office? If less then 5, they are not sure you are serious.

Have you requested to be offered an appointment cancelled by another patient?

I recently had a doctors office call me to postpone my appointment for the third time. I told them NO, postpone someone elses appointment this time. They said OK.

Once my sleep doc told me I needed another sleep study, I had the study, the results and the new PRS1 ASV machine I needed. I followed the advice of a past president, Speak softly but carry a big stick.

Hi, thank you so much for your suggestions. The sleep clinic won't tell me anything. They said I can get whatever I want or need from the doctor. It's against the law for them to give me that info.

I have called, not as much as 5 times a day, but 2-3 times leaving messages for several days. Today, I just got the most cryptic email back from the doctor with just 1 sentence. "You need a CPAP device for home use with 10 cm of water pressure".

That's it. Nothing about how to get it or anything. Of course I wrote back. But it seems like I will just have to wait.

Bill44133 · Post by **Bill44133** » Mon Jun 02, 2014 4:05 pm

I had my split sleep study on April 22 and had my bi-level cpap machine on April 30 of last year.

I wish you well

Kiralynx · Post by **Kiralynx** » Mon Jun 02, 2014 5:39 pm

Well, these are five and a half years old. But perhaps my story of what transpired -- things went pretty smoothly, despite my confusion and not knowing a darn thing.

Newly Diagnosed
viewtopic/t98259/viewtopic.php?p=302936#p302936

First Visit to the RT
viewtopic/t98259/viewtopic.php?p=306702#p306702

First Night on CPAP (thread by another member at that time which I found helpful)
viewtopic.php?p=306070#p306070

Att: Whiners, complainers, quitters (thread which, at the time, really ticked me off -- my reply)
viewtopic.php?p=308736#p308736

Virgin Nights (first three nights on the machine)
viewtopic/t98259/viewtopic.php?p=309325#p309325

Wow, re-reading these was a trip down memory lane.

KCDC · Post by **KCDC** » Tue Jun 03, 2014 11:35 am

Hello all,

Here's an update. This nuerologist of mine is really cryptic. I yet got another e-mail with one sentence saying "My nurse will order the device for you". ????? WTF?

So I wrote back,

"Hi Dr. Potolicchio,

Thank you. I'll be in touch with Andrea. I'm doing some research about CPAP/APAP machines and checking to see what my insurance will cover.

I think what's on my mind right now is a ResMed S9 Autoset (#36005) + S9 Series H5i Heated Humidifier with Climate Control and then get fitted with the correct mask at the DME.

Do you know which DME is the best to use? I have a list here. So, should I call Andrea to find out?

Thank you"

That should hopefully catch their attention that I know what the hell I want..... even though I don't.... LOL.

what do you all think?

What to expect AFTER the CPAP titration?

What to expect AFTER the CPAP titration?

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