Rate your Sleep Lab, Sleep Doctor, DME Experience HERE

[SuperSleeper]

In this poll, I'm interested in finding out how members would rate their whole experience when they were first diagnosed with Sleep Apnea.

Specifically, I'm asking you to rate your entire experience (all the way from being diagnosed by your doctor, including the Sleep Lab experience, and how it went with your CPAP Supplier (DME or Durable Medical Equipment supplier)?

Perhaps we can compare notes and help new "hoseheads" avoid the pitfalls of entering into this CPAP world blindly.

The more information we share, the easier it will be for all Sleep Apnea patients in the long run.

Please vote in this poll to tell us how satisfied you were with with the whole process.

Then if you can, post a reply in this topic thread telling us about your whole experience (what went wrong, what went right, and how you think the whole process could have been improved).

If you've been on CPAP for a long time and you've gone in for an additional sleep study, please let us know how that went also, including any additional experiences you had with your doctor, sleep lab or DME.

[I'm copying some old posts over from our old forum (very similar poll in 2010) for reference purposes, but please add your own comments also].

Remember: To keep within forum rules, don't post any links to a CPAP Supplier or other commercial website here. But you can post the name of the Sleep Lab or CPAP Supplier (DME), as long as the name itself is not a website address.

[SuperSleeper]

[NOTE: Parts of this thread were copied from our old forum]


My DME experience:

My DME when I first was diagnosed with Sleep Apnea was Walgreens Home Health Care. They were generally pretty good, but then again, I didn't know beans about sleep apnea, so I really didn't ask them much or have any issues that bothered me.

One thing I was slightly dissatisfied with was when it came time for me to order a new mask, they stated, "you can get a new mask and tube every six months". I took this to mean that my insurance would cover the expense of these items. A month later, I got a bill from Walgreens for $195 - the cost of a new mask and tube (at insurance company prices). When I called them, they said "yes, you're allowed to get a new mask, but that does not mean that your insurance will cover it - you need to contact them to see what they will cover". Hmmm! Called insurance, and guess what - new mask once per year, and even then, I had to pay copays and fees of what amounted to about $90. Argh!

So, I quickly learned that with my insurance at least, I was better off to purchase my masks and tubing (and filters) online... which I have been doing ever since then. I get better prices buying them outright, faster service and no hassle with the insurance company.

My Sleep Center experience:

My Sleep Center was the Sleep Diagnostics Center at Community Hospital in Munster, Indiana. I would rate them pretty good, but again I had no benchmark by which to judge them. Knowing what I know now, I would only say that they could have been a LOT quieter outside my room during my overnight stay. Seems like they were almost trying to keep me awake with the chatter, noises and various lights going on and off outside the room. Oh well... But, altogether they weren't bad.

[SuperSleeper]

Lincare Towson was my DME.

After going into their office to get my new equipment.(note that they didn't come to my home to train me on my equipment) I explained to the 'tech' that I had been using a cpap for 6 years and I know the importance of constant and consistent use.
I asked about how to set the unit as my home area has frequent power outages and with my old PR unit , I would have to go out to my truck and use the 12 volt setup. (under the 12 volt settings you could not use a setting higher than 10cm)
At this point 'Vicky" proceeded to explain to me how I had 'broken the law' by fooling with the setting!!!

She then proceeded to read me the riot act about 'fiddling' with these settings! I asked for the tech manual, and was thoroughly rebuffed, saying that I had no right to the manual and that it was illegal for her to let me have it. And that there was NO WAY I could ever find out how to reset the unit.I was then spoken to as if I were a 6 year old about the use and importance of the machine.blah blah blah.
HA! She threw the gauntlet down and I responded that evening by email~ I have the manual and know how to reset the new unit.~ Thanks to the fine members here.

I asked the tech if she had sleep apnea and have ever used a cpap/bipap. She asked why that would be a concern to me , as she was trained .I just said that by using one she might understand more what I was saying and would be more sympathetic to the usage and possible problems. Blah to her and her company!!
After trying for several days by phone to get them to check my unit (unsuccessfully) I gave up on them.

My Doctor now has the software to read the card , And I can buy my supplies online cheaper that than through Lincare

[SuperSleeper]

DME is Metro-Med Inc. They've been pretty good so far. I've heard that Lincare was pretty bad.

Sleep Study done at Stanford Clinic. Supposed to be one of the best. I expected better, but got a "fellow/trainee" and I won't be seeing her again. I asked to see someone else if I ever go back for follow-up visit.

[SuperSleeper]

"My" DME (Lincare) has arranged their service for maximum cash flow. In my experience I believe their "therapists" are not well trained and there's quite a turnover of employees. I've been using CPAP equipment for seven months and still can't get a good night's sleep. I've tried (bought) five masks. I've been unable to get any to fit properly, and Lincare does not allow mask trails, so I've purchased a couple on the Internet, but I cannot afford to spend more trail-and-error money. I'm about to give up on the whole process.

[SuperSleeper]

My DME is Bird And Bear in Little Rock, Arkansas. They did a fair job of getting me set up... they were obviously short a staffer or two and had to pull one from a nearby town to handle the day's workload. I was treated very well on a personal level, but was given minimal information and demonstration and felt like I was rushed throughout the process. It remains to be seen how the supply order process will pan out.

As for my doctor... I still haven't met the man. I was scheduled for an appointment, but he had a conflict and could not make it so I met with his nurse instead. After the sleep clinic I was called with the the single sentence results "you've got sleep apnea, we're going to prescribe a CPAP machine for you". Next thing I know I get a phone call about my machine being ready to pick up. No conversation or meeting with the doctor to view or discuss the results. No alternatives mentioned. Quite a racket he's got... never has to see the patient, just review some data and sign a script. I was, and am, deeply disappointed. ^o)

[SuperSleeper]

My DME is CardioSom in Columbus, OH. They did come to my home to show me how to put on the mask, attach the hose, and a few other things. I felt the guy had rehearsed the show a hundred times and didn't hear a thing I asked. The feeling I got was that my questions were either dumb or trivial. I also felt they weren't happy about the mask my doctor had prescribed. They gave me a different one and tried their best to talk me into keeping it when I complained about how tight I had to adjust it to keep it from leaking. That thing simply didn't fit. When I went to their office to return an oxygen machine my GP had first prescribed and to pick up a different mask, the gal there was very helpful. I guess it depends on who you talk to.

My doctor is through "Sleep and Breathing Research Institute" also in Columbus. The first time I saw the doctor he asked a few questions and told me that he KNEW I had sleep apnea. His job was to prove it. That was about all there was to the office visit. Looking back, I guess he must have know what he was talking about. My follow-up with him was much better. He took time and explained what the sleep trial had found and what it meant. The sleepover itself took place in the same building. Except for the wires that felt like I was wearing dreadlocks, the whole experience went very well. I slept like a baby after the girl decided to try me on a cpap. She gave me the option of a nasal or full face mask and let me try each for a few minutes.

[SuperSleeper]

Nov.2006 I visited general Dr. to request sleep study. Had sore ribs for a few years, due to wife constantly elbowing me, "roll over, quit snoring, start breathing"....just constantly disturbing my sleep. We suspected apnea due to dad on cpap for years. Had polysomno sleep test, at closest sleep center, located 70 miles from my home.

They glued these 20+ electrodes all over my body, band around my belly and clamp on finger and let me sleep? Did'nt sleep too well, missed my rib jabbing, I guess. Called gen. dr. 2 1/2 weeks later to see what was up. the receptionist said "Oh, we received your sleep study a few weeks ago." then akward silence. Curiosity got the best of me, so I asked "Now what do I do?" her comment was " Let me check with Dr.?" After a call the next day, they told me I had to have a sleep titration study. I thought that already happened, but no, so I scheduled and did a titration test. A total of $4200 for both,( I only had to pay 20%, still a lot for low budget style motel) Diagnosed with moderate to severe sleep apnea that is not strictly positional,( hope I don't do it standing up.) This time I knew not to wait by the phone for gen. dr. to call. After calling them, I was referred to local dme for fitting and machine use, how to put it on turn it on..... That Dr. don't have time for me, I'm done there. Thru local dme I received an entry level machine, Resmed Escape and swift nasal pillow mask, 6cm. Found mask on floor in morning a few times for the first few weeks, eventually adjusted. Read forums on and off for 3 1/2 Years. set machine to7.2 for optimal non-rib-jabbing sleep. Used 3 different dme's thru years and had 1 factory sealed package billed out as 3 different items, received mask with hole cut in bag and small and large nasal interfaces missing,... each time the bill was almost double of online supplier. Been getting elbowed last few weeks, so I started doing some research.

Talked to new gen.Dr. (a real good one) about prescription for new cpap machine, we had a long enough conversation that he felt I had informed myself enough about cpap therapy. He referred me to another sleep clinic and after not accepting a machine I did'nt want, I asked him for a prescription for "Auto cpap,set 4-12, ( they needed a hi and low, just a quick guess #) heated humidifier and climateline hose. Plus any related supplies necessary for treatment" They wrote it exactly as I had asked. I had'nt used humidifier for years due to rainout. Purchased a Resmed S-9 Auto, humidifier and climateline. I bought it online due to ins. only renting for 12 months, but deductible currently met etc(rib x-rays)....I purchased it outright and submitted bill and prescription to ins. Hope to get 70% covered. When ordering online I specificically asked if the "clinicians manual" was included, she yes. It did'nt, I called and asked about one and was told they already set the pressure and the manufacturer don't put them out, and I don't need to change anything about it.... after a poor nights sleep on my part, a runaround from her and an earful from me, She said she will call Resmed and ask. Within 20 minutes she called me back and said she found one in her "loose" files and will mail it to me. Sent a letter a month ago to get sleep study test from 2006. Titration test showed sporadic sleep S2 stage till 2:04, no snoring, ahi .5.

Then they went from 5cm at 2:04 am to 6 cm. The test showed me awake for 50 minutes and snoring for 1 1/2 hours,ahi .9, no pressure change rest of night. I think the person performing the test must have went home to sleep. I felt they should have tried more than 2 different pressures. On first night with S-9, just last night, the ResScan results showed me where my problems are and can't imagine why anybody would want anything but fully data capable machine. Have a good night...every one of them! jlk

[SuperSleeper]

The RT at the DME (Berks Medical Suplies) set me up with my machine with a 75-second introduction and then handed me a mask. I told her that that was the model I'd used in the sleep lab and had woken up repeatedly because of leaks. She told me to "take it home and play with it and see if you can adjust it". I sorta thought that the reason they have clips these days is so that the therapist can help adjust it and then leave the velcro in place.

Three days later I brought it back, saw a different RT and got the mask I use now. During that visit, I had brought along my smart card (haven't sprung for the softwear yet) and asked her to print it out to see if the pap was doing anything for me, because I was getting frustrated. She downloaded the data to prove that it was - nope, my AHI was higher than during my diagnostic study. So she DID call up the sleep doc for me and move up my appointment, and I'll give her credit for that. Anyway, when I was switched to biPAP two weeks later she called to see when I could come in to pick it up. I told her I could come in later that day and she said the other therapist was in the storage room looking for a used one I could rent to try (I'm on a three-week trial on the BiPAP to see if it does anything for me or I need an ASV). When I picked it up I reminded her that she'd promised if I end up staying on BiPAP I would be given a new unit. She said, "this is a new unit". No dummy, I asked to see the carton it had come in - couldn't show it to me. This week I called to see if she could download data because the machine says my average AHI was over 8. She told me I should be happy with that because "7 is average for the general population". I will not go back there, but ask the doctor for a new script to take elsewhere.

The sleep center (Respiratory Specialists) is pretty good and I REALLY like my doctor. I had three sleepovers in three weeks (diagnostic followed by titration study two nights later, followed by titration for BiPAP/ASV two weeks later). The only complaint is that when the tech had to switch me from B to A in the middle of the night and I woke up half an hour after she'd switched me during sleep, I had trouble breathing against it and she didn't take any time to explain it to me or talk me through it. After half an hour and I was still awake she put me back on Bi and wrote on my chart that I couldn't tolerate the ASV. Treating my centrals will probably require it.

I was assigned the doctor that I see at the sleep center when my appointment was moved up. Actually I'd met him before and really admire him as a doctor. I'm a pastor, and I met him while one of my elderly parishoners in an ICU. Later he'd called me on my cellphone (gotten from the nurses) to discuss how we could address end of life issues with the parish member's family. He definitely cares about his patients! He isn't too happy about my complex apnea and is using my data in the course he teaches on sleep disturbances and apnea at one of our state medical schools.

[SuperSleeper]

Bad Experience with Lincare: I have used a Resmed S8 Elite for the past three years, but, it is malfunctioning (bad power switch), and I am shopping for a new one. My employer has switched insurance companies, so the great DME company I worked with before is no longer approved by my new insurance company (United Health Care). My doctor mentioned that many go to Lincare (in Albany, Oregon), so I contacted them. Never have I been so amazed with the lack of knowledge about CPAP products, features, and helping me insurance issues.

It is hard to believe that they can stay in business. I'm sure there must be actual Lincare people who know the CPAP business, but, I did not interact with any. The office staff wanted to provide me with whatever made them the most money, apparently. I told them I wanted a Resmed S9 Elite, as many folks on these Apnea forums are happy with it. First, Lincare told me that they could order one. Then, they could only sell me an S9 Escape with Autoset, as that was "the only one my insurance would approve." I do not even have an Autoset prescription.

After I had my doctor send a specifically-worded prescription to Lincare, saying, "Resmed S9 Elite, etc.", they again told me that my insurance would not approve this model. I then called my insurance company, who informed me that no one had contacted them about authorizing a new CPAP for me, and, they could not understand why they couldn't cover what I wanted. After FAXing Lincare (twice) about this interesting contradiction, they finally called me back to say (somewhat sheepishly) that it was Lincare's "policy" not to provide the Resmed S9 Elite model. Sorry for the mixup. etc. I thanked them, and told them I was going to look for another DME that would.

Dave