UPDATE: Newbie Navigating the Medical/DME system

[eljorgito]

(my original post is here: http://bit.ly/cLEYz5) Here's an update to the story... mostly recording for future newbies going through the same thing since I found that just reading through others' experiences was insanely helpful over the last week.

Quick backstory: last week I didn't know who the DME would be, didn't have anything from Dr office, and was super nervous about how this would all go down and feeling not in control of things. I didn't like that.

Thanks to everyone here for their support & ideas!

Here's what happened:

• yesterday I got a call from a local DME saying they had a prescription and would call back to set up an appt
• i immediately called the patient care coordinator at the sleep clinic and left message saying "hey, just got voicemail from XYZ DME, will talk to them but also want to talk to a couple more that my insurance works with, will you fax me the Rx?"
• about an hour later, I got the prescription via fax. I now have it in my hands. I can do whatever I want. Yippee!
• Called the DME. Reception person explains they'd check with insurance and then schedule me to come in for appt.
• Asked how they select what machine I'll get. She sez: "oh you'll get a remstar auto P series"
• I say: "what if I want something else?"
• she says: "that's what the dr wants you to have so that's what you'll get"
• I say: "I have the prescription right here and it's for an Auto CPAP, no brand specified. I should get a say in the matter"
• she started to say no, you get what DrX says... then background conversation on her end picks up and she says "Oh, I guess DrX has more flex, let me call you back in 5 mins"
• In about 30 mins, I get call from respiratory therapist at DME who says "DrX is fine with patients choosing their own as long as they are data capable and resmed or respironics"
• I say "great, how about an S9?"
• she says "oh we're just getting those in! you've been doing you're research... that's really great, we love that!" (she seemed very sincere... I believe her)

Tonight is my last night without CPAP unless something weird happens - going in tomorrow to get set up and they apparently have an S9Auto reserved and waiting for me. Can't wait to get started... and then figure out how to handle the travel aspect, since I leave on Sunday for 3 weeks of international travel (Tunisia, India, Kenya).

My takeaways:
1. doing the research and homework and getting help here ensured that i knew what i wanted (the Rx, for example, in my hand) and that I knew what to ask
2. taking an approach of assuming I am the one in charge (all these people work for me... which doesn't mean I'm mean to them! I'm nice to the people who work for me, and I fire them if they aren't a good fit) really shifted my mindset and relieved a ton of anxiety
3. So far, the DME I got paired up with doesn't appear to suck at all but I have my eyes open and am ready
4. CPAPTalk.com may be habit-forming in some individuals. Use with caution.

Thanks again, everyone... will send more when I have more experience!

-george

[Julie]

Oh my goodness - sounds like you hooked up with a good DME, but the travel thing when you're just starting out? In a few days? for 3 wks? That's quite a concern. Have you spoken to the airlines involved? Do you know to never check your equipment under any circumstances, but bring it on board? Will you bring an AC adaptor along? I suggest you do a lot of reading here on travel with Cpap, but the larger problems of just starting out, quite possibly with a mask or masks that may not at all be suitable in the end (e.g. if you end up breathing through your mouth when asleep, Cpap makes that worse and you may need a full face mask for therapy to be effective) or just not well fitted. Plus if your machine has a problem, you might find a DME where you're going if you're lucky, but what if you can't? Hope you have a great time over there, but you need to do a lot of work before going!

[dwsupt]

As Julie noted, the first thing you need to do is go buy an international travel voltage adapter. The thing looks like a swiss army knife with all of its different configurations. I assume the S9 is a 120/240 machine? If not, that could be a problem. Look on the transformer, it should say.

[JohnBFisher]

... (my original post is here: http://bit.ly/cLEYz5) ...

THANK YOU! Thank you for the update. It helps everyone to learn from the experiences of others.

Just as a note with this forum, you can use the BBCode to make a URL reference more readable. For instance, the "Not so newbie" story is looks like the following code:

Code: Select all

... the "[url=http://www.cpaptalk.com/viewtopic/t50536/Not-so-newbie-story-and-help-request.html]Not so newbie[/url]" story  ...

... she says "oh we're just getting those in! you've been doing you're research... that's really great, we love that!" (she seemed very sincere... I believe her) ...

Sounds as if you found a good DME. Remember, unless we demonstrate - in our conversations - that we are not the "average" customer, they will want to just stream line us. Sounds as if your DME and your doctor both are good. They want you to have a data capable unit. They want you to be involved in your therapy. You did very well talking with your DME. Good job.

... CPAPTalk.com may be habit-forming in some individuals. Use with caution. ...

Hey! I resemble that remark!

[mattman]

Here's what happened:

• Asked how they select what machine I'll get. She sez: "oh you'll get a remstar auto P series"
• I say: "what if I want something else?"
• she says: "that's what the dr wants you to have so that's what you'll get"
• I say: "I have the prescription right here and it's for an Auto CPAP, no brand specified. I should get a say in the matter"
• she started to say no, you get what DrX says... then background conversation on her end picks up and she says "Oh, I guess DrX has more flex, let me call you back in 5 mins"
• In about 30 mins, I get call from respiratory therapist at DME who says "DrX is fine with patients choosing their own as long as they are data capable and resmed or respironics"
• I say "great, how about an S9?"
• she says "oh we're just getting those in! you've been doing you're research... that's really great, we love that!" (she seemed very sincere... I believe her)

-george

Sounds like both you and the company may be getting along really well. That's great!

Only things I'll add are this:

1) Just as an FYI - it's VERY common for doctors who do a lot of xPAP orders to make it known to local DMEs that they only want their patients on <x> machine no matter what the prescription says. So don't hold that first statement against the DME. They were most likely going on specific direction from that doctor to provide you with the Remstar Auto P.

2) Definitely get an an international converter as well as plug adapters. I've also suggested taking your entire machine to a store like Radio Shack, telling them exactly what countries you are going to and having them set you up with what you need.

mattman

[JohnBFisher]

... Definitely get an an international converter as well as plug adapters. I've also suggested taking your entire machine to a store like Radio Shack, telling them exactly what countries you are going to and having them set you up with what you need. ...

Here's some other resources:

http://www.magellans.com/store/Adaptor_ ... ters?Args=

http://en.wikipedia.org/wiki/AC_power_plugs_and_sockets

[eljorgito]

Thanks again all - good advice on the travel stuff. I've got slews of equipment to handle the power issues (the work I do is all developing world) so should be set there, and will see how taking the machine through security in some of the more interesting parts of the world goes (but I have a lot of experience finessing that situation, too). I wanted to get the machine now and have a couple of nights on it at home... doubt i'll use on the plane on Sunday but otherwise will be great to have it with me as I'm very curious to see whether/how it impacts jetlag.

Oh my goodness - sounds like you hooked up with a good DME, but the travel thing when you're just starting out? In a few days? for 3 wks? That's quite a concern. Have you spoken to the airlines involved? Do you know to never check your equipment under any circumstances, but bring it on board? Will you bring an AC adaptor along? I suggest you do a lot of reading here on travel with Cpap, but the larger problems of just starting out, quite possibly with a mask or masks that may not at all be suitable in the end (e.g. if you end up breathing through your mouth when asleep, Cpap makes that worse and you may need a full face mask for therapy to be effective) or just not well fitted. Plus if your machine has a problem, you might find a DME where you're going if you're lucky, but what if you can't? Hope you have a great time over there, but you need to do a lot of work before going!

To Julie's point: yep, if I have trouble with the machine/mask while in the field, I'm probably not going to find any local support. I'll have internet most places so will be able to search here if needed, and then will be able to settle back in when I get back home in a few weeks. Won't be checking the equipment and on this trip at least I'm on major carriers so we'll see... it's an adventure!

As Julie noted, the first thing you need to do is go buy an international travel voltage adapter. The thing looks like a swiss army knife with all of its different configurations. I assume the S9 is a 120/240 machine? If not, that could be a problem. Look on the transformer, it should say.

Yep: the S9 power brick (boat anchor) is dual voltage.

Tonight is night zero!

[rested gal]

I am sooo impressed with how you're going about all this, George! And how well your DME is responding to your requests.

You're doing a great research job, getting yourself ready for "cpap."

Even if you hit the usual bumps and glitches getting everything comfortable enough to sleep well in this crazy new way, it's obvious you have the confidence, intelligence, and determination to "make it work."

As icing on the cake ... you found a DME that wants to help make it work and doesn't resent a knowledgable proactive client.

I hate the word "patient" (sounds so invalid-ish, which I'm not.) I think of myself as a "cpap user", like being an "eyeglasses wearer." And I think of people who take their business to a DME store as being that store's customers or clients. Just my way of choosing to look at things. Through my K-Mart reading glasses, anyway.

Hope all goes extremely smoothly for you.

[GumbyCT]

The first mask doesn't work for most people. Guess you should have an idea by morning

I would consider taking another mask or two (of different styles) before you depart. You will be at a severe disadvantage trying to climb this steep learning curve while away.

Keep in mind that Resmeds are sensitive to alternate power adapters so read up on that too.

[eljorgito]

I would consider taking another mask or two (of different styles) before you depart. You will be at a severe disadvantage trying to climb this steep learning curve while away.

By different styles do you mean an FFM in addition to a nasal pillow or something else?

At this point I doubt I'd be able to get another one to try (should have thought this morning at DME to ask for a couple to try and bring back after the trip), so I'm likely to risk it with the one and see how that goes.

Keep in mind that Resmeds are sensitive to alternate power adapters so read up on that too.

Ah, good tip. Will poke around on that, thanks!

[eljorgito]

I am sooo impressed with how you're going about all this, George! And how well your DME is responding to your requests.

You're doing a great research job, getting yourself ready for "cpap."

Even if you hit the usual bumps and glitches getting everything comfortable enough to sleep well in this crazy new way, it's obvious you have the confidence, intelligence, and determination to "make it work."

As icing on the cake ... you found a DME that wants to help make it work and doesn't resent a knowledgable proactive client.

I hate the word "patient" (sounds so invalid-ish, which I'm not.) I think of myself as a "cpap user", like being an "eyeglasses wearer." And I think of people who take their business to a DME store as being that store's customers or clients. Just my way of choosing to look at things. Through my K-Mart reading glasses, anyway.

Hope all goes extremely smoothly for you.

Thanks!

What's interesting is that at the DME I didn't even have a respiratory therapist - apparently she didn't make it to work today - so the account exec set me up. Based on research and all the work done here & elsewhere, it wasn't an issue... I was their first S9 and I think I knew as much about the machine as the guy setting it up. (and resisted the urge to tell him I'd be hitting the clinician menu as soon as I get home, and getting ResScan (once I find a source for that!), etc., as I think it would have freaked him out a bit).

Did get good help on trying a few nasal pillows (which was what I had asked for), but I'm guessing if anything gets wonky it will be on the mask side. Main thing I would do differently is to get a couple to try on this trip as I'm ramping up per GumbyCT's comments...

Also got more data on my sleep study than the sleep clinic had given. Apparently AHI was 11 and low blood ox level was 89%. Haven't done the homework yet to see where on the spectrum that falls but I believe it's relatively mild.

TOTALLY agree with you on the client vs patient distinction. That's true across the medical spectrum, in my opinion, but that's a much longer conversation that branches into the insurance and big pharma world, where medical pros get their information, patient advocacy, and lots of other fun stuff.

[rosiefrosie]

Sounds as if you are going to do well. Good for you! Just to let you know my first mask worked for me and am still using ResMed nasal pillows just with some variations. Good Luck.

rosie