I haven't started CPAP yet - have had a bad experience all the way around starting with the place I had my sleep center and then with the DME . . . have to start over again . . .

At my sleep center, on my 1st night, I was in an office with a Murphy bed and the left side of the bed contained a cabinet which apparently held supplies because the techs came into my room, turned on the light and sorted thru the closet throughout the night to find items they needed. Also there was no air circulation and it was too warm. After the tech opened the windows, it got cooler but still warm enough to sleep without any sheet or blanket on, and still no air circulation. On the 2nd night, I was in a smaller room with a smaller bed, but there was a fan and I had time to adjust the direction and speed while waiting for the tech, so even though the bed was smaller – especially with the equipment in it – the temperature and air circulation was better and the techs didn’t need to come in and out throughout the night to find supplies. BUT what bothered me the most was such a simple thing – in both rooms, the beds had plastic covering on the mattresses – but NO top sheet ! They had only a VERY thin piece of cotton material that was laid across the TOP of the mattress. It was the same size as the length and width of the mattress so it did not go down over the sides, top, bottom of the mattress. And so as soon as you sat on it for the tech to hook you up, the material started to bunch up and then as the tech placed the equipment under the pillow, the material pulled down from the top – and then as you laid down – well, that was it – the material just shriveled up under you ! So, throughout the night, your whole body, especially your arms and legs were partly on a damp plastic mattress or tangled up in a pile of crumpled up cotton fabric. (Since I had been reading the SG forum and thought it was important to find out ASAP out my OSA, I remained with the same sleep center for the 2nd test – but I wish I had thought to take a sheet from home for my 2nd night.) Needless to say, I didn’t sleep much either night for a whole assortment of reasons.

Also I was given vastly differing info between my 1st and 2nd sleep study tests regarding my condition and then after my 2nd test, I was contacted by a receptionist and told that I was to start using CPAP - but she would not provide me with any verbal or written info about my results and said that it was not their practice that I should speak with a doctor. However, since I wouldn't start CPAP without knowing something about my condition, the doctor asked that I come in, rather than talking with me on the phone, in order to explain my sleep study results and I had to wait another 3 weeks for that appointment.

I had thought, at both my initial consultation and at the visit afterwards with the doctor, that I received very good information. However, having learned an awful lot from the SG forum, I was able to read my sleep study results at home and found that the doctor had really slanted how she represented her findings at my follow-up meeting. Ultimately, the sleep study results do strongly show that I have severe sleep apnea, BUT I do need to have another sleep center conduct a reliable and complete sleep study in order to have the correct treatment plan determined for me by competent and qualified doctors who are in the field for health, rather than profit, motives. Someone else who I know who went to this sleep center got the impression that they were trying to fill some statistical quotas with their patients rather than providing a health service (and they also refused to provide her with her results). And I got the feeling that they had set up a unit within the hospital to make money in a niche market and to have a way to bill between the hospital, doctors and the DME.

However, after meeting with the doctor, since I think the diagnosis and mode of treatment is correct, only the "level" of treatment is in particular question and so I have felt comfortable getting started with CPAP even before going to a more competent sleep center for another study given how very much I have learned on SG and because the S8 Auto II will provide efficacy data including: pressure, leak rate, apnea / hypopnea index.

BUT - and now it only gets worse - at 1st, when I spoke with the DME that I was directed to contact, they seemed VERY helpful and cooperative and I wrote down everything they told me and I was SO VERY pleased that I had wound up with such a great DME after the horror stories that I had read about on SG. I was even going to post about them on SG but decided to wait until I had received my equipment to see that their excellent service followed thru with more than a phone call. But, then I got sick and had to go into the hospital and had to put off receiving my equipment for 2 weeks. And during that time, I had a chance to research the full line of ResMed equipment online and ask for recommendations from SG members.

From the notes I had taken, I realized that the DME was intending to provide me with the C-Series, the oldest CPAP machine and humidifier (combined) – and comparing that with the advice I received on SG, I knew that it is NOT a suitable machine – and that I must refuse it. - Also, SG members had provided me with info that my insurance would pay for any machine that I choose - that it was not up to the DME which machine I choose.

Given that the feature to receive efficacy data (leak rate, apnea / hypopnea index) is the critical feature to me, I called my DME (with whom I had previously spoken with 2 reps and a supervisor and with whom I thought I had an EXCELLENT relationship) to ask to have my order changed to substitute the S8 AutoSet II for the C-Series CPAP and, all of a sudden, the DME wasn't so cooperative anymore. They dug in their heels and said they would not do that without a specific RX from the doctor. I knew they didn’t have the right to do that but thought it was maybe the fastest and easiest thing to do without threatening them with contacting the NY State Dept. of Health, etc. So I called my doctor's office and left a message for her to please fax them a RX to the DME to issue me a S8 AutoSet II and detailed for the receptionist why I was requesting that: efficacy data, EPR - exhalation pressure relief and Ramp (which is only optional with the C-Series).

The next day, I called my DME to reschedule my appointment and thought that rather than threaten them with the NY State Dept of Health, that I could just tell them that I knew that the insurance would cover whichever CPAP I choose and that I wanted the S8, not the C-Series - and I explained the main efficacy data feature that I wanted. The rep said alright and changed my order and we planned that I would call back at the end of the week to set up my appointment for the rep to visit with me next week.

About an hour later I thought to call my doctor's office to tell them that my doctor did not have to take the time to fax a new RX to the DME because I had talked with them and they had already changed the order to the S8. The receptionist informed me that was not so because the DME had already called my doctor and they had decided that I was not to get the newer machine. Also, the receptionist said the doctor was not in and she is very busy with many things that she does with tests and patients and that she would get back to me when she could. I mentioned that I was a patient - to which I was told that that was so but that, as the doctor was very busy, as had been explained, she would get back to me when she could.

When the doctor called me she expressed her anger at my audacity in requesting particular equipment. I remained calm and explained to her the primary reason being that the unit I wanted provided the efficacy data for the doctor that the other unit did not - to which she said she did not believe me but she would check. To the 2nd reason - EPR - she said that did not matter in any way what-so-ever; however, just before we hung up, she told me after I got started with CPAP that she was going to be switching me to Bi-Level – yet she didn’t think EPR is important ! And, as to the fact that Ramp is optional with the C-Series on the Resmed website - she said that she was sure that I was absolutely wrong - but that under the circumstances that she would approve that I get the unit that I had specified. THEN she started yelling and screaming at me about how I should use CPAP and that she had spent a lot of time in the office with me . . . I wasn't sure as to what her point was . . . When she stopped ranting and there was a silent pause, and I said: Am I supposed to say something now? To which she made some sort of a grunting sound . . . I reminded her that I had not been able to start CPAP because I had been in the hospital due to an emergency - to which she spit out: Oh, yes, I hope you will be alright.

I was mystified at the bizarre episode. And, due to all that has occurred, I did not call the DME to set up an appointment for their rep to visit with me. I am COMPLETELY through with any further association with that sleep study center and that DME.

Very fortunately for me, I had made an appointment with another sleep study center and my consultation is for this coming Monday morning. So I will wait 'til after my Monday appointment to proceed with CPAP. I am going to take my full sleep study reports to my appointment and ask the new sleep study center for their DME recommendations to contact to get equipment.

The sleep study center that I am going to on Monday was recommended by members of SG and, rather than feeling defeated, I am feeling more confident in my search for help with OSA than I have been from the very onset of this process because I have more confidence in this sleep study center – and because I have learned so much from so many on SG and, thereby, learned that, while OSA is a serious condition, it does seem manageable with compliance, tenacity and the generous, on-going support and championing of so many great folks at SG .

Thanks to All !
Renee