Waiting to Inhale

Chimakwa · Post by **Chimakwa** » Thu Apr 22, 2010 1:19 pm

Howdy all! I'm glad to find this forum, everything I've read here so far has been helpful.

I got a prescription for a sleep study back in November, but unfortunately had to reschedule my study twice (first time I had to fly out of town at the last minute for a family funeral, and the second time I had the worst cold I've ever had and could barely breathe when I was awake, let alone asleep.) Finally I had my study done at the beginning of April and went to talk about it with my doc this morning.

No surprise: I've got apnea! (I coulda told 'em that myself..) Now she wants me to go see a sleep specialist at the center to get set up for treatment (hallelujah!) They titrated me during the second half of my study (which is great because I am not in any hurry to do another study) so I think it's pretty much a matter of discussing my numbers and getting me set up with a DME.

Unfortunately I just got off the phone with the sleep center and the earliest appointment for a consult is 88 days away. I got put on a waiting list in case an earlier appointment cancels, but I'm not happy about potentially having to wait yet another three months to start getting this under control. I would try to get my doctor to write me the Rx so I could jump on this sooner but unfortunately "my doctor" left the practice so I'm stuck seeing people who weren't in on the decision to do the sleep study, and who I don't know and who don't have any clue who I am. (Also, the sleep center is part of my hospital system and I don't know if they'd bypass them even if it was my old doctor.)

Any advice? Have any of you found that having a non-specialist prescribe the equipment has been problematic?

Julie · Post by **Julie** » Thu Apr 22, 2010 1:55 pm

Well, short of finding the good side of the hospital's ombudsman, if you can afford it I would just order a data-capable autopap machine from Cpap.com, get help here from everyone with setting it up and you'll be able to titrate ideal, or at least very likely useful pressures for yourself. Get the 'right' machine (others will lead you to the Resmed S9... something - don't use it myself at the moment, but the right model is important for you) and get started. If not, then I know others will have answers as well.

jmelby · Post by **jmelby** » Thu Apr 22, 2010 2:07 pm

Wow... that's really an awful wait... my sleep doctor met with me the morning of the sleep study. I guess I'd ask the sleep center for a copy of your sleep study results and bring it to your GP doctor and see if they will give you the Rx. There's no reason they can't if they are so willing.

echo · Post by **echo** » Thu Apr 22, 2010 7:36 pm

You can also try, very nice and polite and all, to call every day and check for cancellations. Show your enthusiasm

Welcome to the forum and I hope you get to inhale soon!

Chimakwa · Post by **Chimakwa** » Fri Apr 23, 2010 8:35 am

OK, I just wrote my doctor to ask if she'll write me the prescription so I can get started. I hope I sounded informed --

However, I’m not comfortable potentially waiting another three months to begin treatment if I can help it. I’d like to find out if you’d be willing to write the initial prescription for CPAP therapy for me so I can begin without waiting for the appointment; I’m more than willing to take the initiative in dealing with the DME, and once I have the prescription I’ll also have walk-in access to the sleep center’s mask clinic for set-up and maintenance education. I can keep the July appointment with the specialist as a follow-up, of course.

Incidentally, I’d be interested to know my Apnea/Hypopnea Index from the study results; it would be great to know as a baseline.

Here's hoping she makes it easy! I also got my insurance to cough up its policies on OSA treatment so I know what they cover and what they don't. This forum has been great for self-education -- THANKS ALL!

echo · Post by **echo** » Fri Apr 23, 2010 8:39 am

Great! Now don't just ask for the AHI, ask for the FULL Report, and not just the 1-2 pages dictated report. You have a RIGHT to that information!

Chimakwa · Post by **Chimakwa** » Fri Apr 23, 2010 8:46 am

I think I'll request that from the sleep center -- I'm not sure how much info they forwarded to my GP in the first place. I will do that though!

Chimakwa · Post by **Chimakwa** » Fri Apr 23, 2010 9:26 am

..and my GP just got back to me! Her nurses will be faxing my prescription and sleep report to a DME covered by my insurance, and I called the nurse to make sure they call me to let me know who they assign me to and to give me a copy of the Rx so I have some ammunition when dealing with the DME.

I feel so bossy. It's great. Thanks again all for giving me the confidence to demand what's best for me.

kteague · Post by **kteague** » Fri Apr 23, 2010 9:43 am

Hello and welcome. Have you checked what your insurance will cover, if there's a rental period with copays or a purchase with copays? Some come out better purchasing their machine online, but you'd have to crunch the numbers. Since you've been reading here, you already know about making sure you get a data capable machine. Hope you're starting treatment REAL soon.

P.S. Love the title of your post!

carbonman · Post by **carbonman** » Fri Apr 23, 2010 10:21 am

Chimakwa wrote:I feel so bossy. It's great. Thanks again all for giving me the confidence to demand what's best for me.

You're experiencing one of the greatest benefits of cpap therapy...
and you haven't even strapped on a mask yet.

It's YOUR therapy.

Go the distance.

pdean44 · Post by **pdean44** » Fri Apr 23, 2010 5:48 pm

Good luck you are off to a great start

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