so confused...new to this with very little info

[xiola]

Hi.

so.. im really confused. This all happened so fast and I am a bit ashamed to say that I know very little about what's going on.

So on Thursday i had an appointment with a new Dr, a Psychiatrist. Hadn't seen one before, he ended up asking me to go for a sleep study. The sleep clinic had a cancellation so they got me in Friday night. They hooked me up to all the wires and such, etc.. I didn't fall asleep well, and they told me I had to come back on Monday night for more testing. I didn't hear anything from them over the weekend. Last night they hooked me up to the cpap and had me sleep that way. The Dr. from the sleep clinic called me just a bit ago and said the initial test showed I woke up 26 times an hour, and with the cpap that was greatly improved, and he was going to put in a perscription to have my home health care rep call me...

what home health care rep? I've never had a home health care rep in my life.

I never even met the Dr. wtih the sleep clinic. the technician took my info, took my picture, and she was the only person I dealt with.

Who is my main dr. in all of this? My regular Dr. doesn't even know that all of this went on. Surely when I have questions I don't have to call the Psychiatrist who originally referred me....??? Do I call the sleep clinic with any questions? the vauge "home health rep" ??

I'm so lost. I feel like the past few days have been this giant whirlwind of dr's, clinics.. and no iformation. the tech at the clinic asked me if I had any questions about the study...but not about what would happen next.

I have no idea what my test results were, they said they would send them to the Dr. that referred me. But it seems odd that I'd continue to coordinate care of a condition such as this through a psychiatrist?

help. lol.

the good news is - i bought a hook to hold the tube up over my bed baby steps i guess. I really am looking forward to getting my machine, whatever kind it might be, and maybe i'll not be so tired (and grouchy) all the time. but I really have very little understanding of all of this.

[Georgio]

Congratulations on being diagnosed and finding this site. Your future is bright!

1. Obtain copies of your sleep tests immediately (not just the summary, each should be several pages), they are required to provide them to you by federal law. You can then post them here via Photobucket for more detailed help.

2. You will need a "fully data capapble" machine. Be sure you get one and do not accept an "el cheepo".

[cinco777]

Click on the "Our Wisdom" icon (a lightbulb) at the top of the CPAPTalk screen and start reading. If, after reading a topic, you have questions, you can search the forum or start a thread with your question (and will definitely received many helpful answers).

[Irene P. 1]

Sorry there is so much confusion. The "health care rep." referred would be a durable medical equipment (dme) rep, from a company that provides the equipment that you need. Your doctor would probably be the sleep clinic dr. whom you haven't met. It sounds like the doctor intends to send your prescription for the equipment you need to a dme picked by him/her. You can either accept that or you can select your own dme based on your insurance coverage. You could call your insurance company and ask which dme's they work with in your area, and you could pick your own if you wish, or even buy online.

It's a lot to absorb quickly, but read all that you can from the wisdom section of this site (yellow lightbulb at top of screen), then come back and ask any further questions you have.

Hang in there. It'll all come together for you.

Irene

[Slinky]

Whoa! I agree w/you that this is all going TOO FAST w/o proper information being provided at any step along the way.

It is good tho that they are responding quickly as most of us find the process taking as much as 3 months from suggestion of a sleep study to being set up w/a local DME (durable medical equipment) provider. Its just that they are all responding so quickly w/NONE of them taking the time to bring YOU up to date in a competent manner.

Since they started the ball rolling w/a local DME supplier, lets start there.

1] ALWAYS KEEP IN MIND that YOU are the person who will endure the benefits or consequences of any test, procedure or therapy a doctor suggests. ALWAYS KEEP IN MIND that YOU are the one paying THEM, whether thru insurance or out of pocket is immaterial, either way YOU are paying THEM. It is YOUR health, YOUR sleep and YOUR therapy. YOU have the FINAL say on what you will and won't accept. YOU are paying THEM for their knowledge and expertise BUT YOURS is the final decision.

1] Call your insurance company and ask them what local DME CPAP providers they are contracted with. Hopefully you will have the option of more than one as that gives you more bargaining/negotiating room to get the equipment you want (w/in reason, of course). You should also ask about any annual deductable, what the annual deducatable fiscal year is, any copays, outright purchase of the xPAP (any CPAP is an xPAP) or some form of capped rental (rent to own).

2] INSIST on and ONLY ACCEPT a fully data capable xPAP. For the most part this means a Resmed S8 Elite w/EPR, Resmed S8 Elite II w/EPR, Respironics M Series Pro w/C-Flex, Philipps-Respironics SystemOne Pro w/C-Flex. DO NOT ACCEPT ANY Resmed w/Compact or Escape in the name NOR ANY Respironcs or PR SystemOne w/Plus in the name. Just because a device has a data card does NOT mean that it is fully data capable!!!

3] FAX a WRITTEN request to the sleep lab doctor for a copy of 1] the doctor's dictated results (1-2 pages each) and the full scored data summary report w/condensed graphs (5+ pages each) from both your in-lab sleep evaulation PSG "and" your in-lab CPAP titration PSG "as well as" a copy of your equipment order (prescription) as you wish to shop your local DME options yourself. Also request that this information be FAXed to your family doctor. Ask this sleep lab doctor WHO is responsible for going over your sleep studies with you and discussing their results and your needs as you want to set up an appointment for a consultation w/whoever it is.

4] Be sure to ask any local DME provider you talk to just how lenient their mask exchange policy as THE MASK is THE KEY to successful xPAP therapy once they have determined your proper pressure needs. Unless you insurance is only contracted w/one local DME provider you are NOT obligated to accept equipment from the first local DME provider you talk to.

5] Be aware that
a] most all insurance companies reimburse for equipment by insurance (HCPCS) code and NOT by brand or model. The insurances contract w/the local DME suppliers for a set price for each specific HCPCS code. ALL CPAPs from bare bone compliance data capable only thru fully data capapble thru fully data capable auto titrating PAPs are HCPCS code e0601. The bare bone modles cost the local DME providers the least and the fully data capable auto titrating PAPs (APAPs) cost them the most so naturally they prefer to pawn off a bare bone compliance data only CPAPs on unsuspecting new patients if they can get away w/it.
b] Resmed, Respironics and Fisher & Paykel all will provide FREE to the local DME providers most any of their mask models that patients have tried and been unsuccessful with IF the local DME provider will fill out a form and return mask and form to the manufaction W/IN 30 DAYS.
c] most insurances require some form of rental period for the PAP device but usually pay for the rest of the equipment, humidifier, mask, hose, etc. up front when you receive your equipment.

[KatieW]

You already have some good advice here. The only thing I would add is, if it is going too fast, take control and say..."stop I need more information." It's great that they want to move quickly, but not at the expense of making a hasty choice.

After getting my sleep study results, the doc's assistant asked me, "which DME do you want to go to, and I'll make the appointment for you." At that point, I said I want to talk to them all 1st, and see what they offer. She seemed a little taken aback, and when I added "I might want to buy on-line", she scowled with disapproval. and said "but you need the support of the DME." I knew,after reading at this forum, that sadly, you don't necessarily get good support from a DME. So shop around if you can.

[carbonman]

Hi.

so.. im really confused. This all happened so fast and I am a bit ashamed to say that I know very little about what's going on.
help.

We all feel tired and fatigued....but it is the gradual destruction that happens so slowly
that we don't realize how much damage is done. It clouds our cognitive abilities and
and dulls our decision making abilities.
There is so much information and so much to learn when we walk out of the sleep study.
There are so many decisions that need to be made, and we are at a disadvantage.
No wonder it's like shooting ducks in a barrel for the DME to fleece us.
I know, I was a duck in the barrel once.

Be aware that you are working w/a disability, admitted or not.
Read, read and re-read the advise you receive here.
Be kind to yourself as you begin your cpap journey.
Take it as you can, you can't learn it all over night.
Be patient in learning to deal w/your mask and learning a new way to sleep.
Check, check and triple check if you're not sure about a decision.

Your brain will come back to life and it will eventually thank you.

[xiola]

Thank you, everyone for your replies. it's helped a lot. I read over the information in the Our Wisdom section, have requested my records from the sleep clinic, and know what to ask for from the medical company. Well, as far as machines go, at least.

getting this all sorted out and working for me, with all the variables, i think is going to be a huge pain in the rear... I don't deal well with those and tend to give up, which i know i can't this time. this will be difficult.

I do need to call my insurance company to find out about my options on who to get the equipment from. I don't know if the claim went in through the medical side or the mental health side.

im still really overwhelmed, but feeling a little better now that i have some information.

thanks again for all your advice

[Pugsy]

I do need to call my insurance company to find out about my options on who to get the equipment from. I don't know if the claim went in through the medical side or the mental health side.

It is a physical medical condition with pertinent physical diagnosis codes. Should be handled by the medical benefits division. Just because a mental health doctor got the ball rolling doesn't mean it goes with the mental health benefits.

Good luck. Take time to breathe and soak in all this new information. You will thank yourself later for doing it.
Educate yourself and things will go more smoothly. Learning will help you get past the bumps in the road and most of the time we do have some bumps...some larger than others.

[jweeks]

im still really overwhelmed, but feeling a little better now that i have some information.

Xiola,

This is a big change. It is only natural to be a bit overwhelmed.

There are 2 dynamics at work here:

1) someone once said that the best way to eat an elephant is a bite at a time. Don't be afraid to slow things down a bit and take it a step at a time.

2) OSA is very damaging to your heart and brain. You really want to get on the treatment as fast as you can.

These are conflicting goals. You are almost going to want to let things happen so you can get your machine quickly, and then maybe have to catch up on the learning as you go. Once you get on the treatment, your thinking is going to be a bit clearer, so it will be easier to catch up as you go. The downside is that a lot of people get stuck with big bills and sub-par equipment out of the git-go due to not knowing what to ask for. Perhaps the best thing might be to try to rent the equipment for a 60 to 90 days to get settled in and get you to your first follow-up appointment. That would then be a good time to go for the permanent machine. I don't know how this works with insurance, so there is yet something else to ask about.

BTW, this did happen very fast. It usually takes weeks to get a referral and appointment with a sleep doc, then a few more weeks for the sleep studies, then a few more weeks to get the machines. You really are on the fast track here. But that is good. You want to get started as soon as you can to save as many of those remaining brain cells as possible. Good luck!

-john-