My Story... is this normal?

When I discussed the possibility of OSA with my doctor (based on things my husband told me about my sleeping), she referred me to a cardiologist to have him set me up for a sleep test. The test was at our local hospital. A few hours after I left the sleep lab, I got a message on my answering machine from the doctor who read my resullts, not the referring doctor. I called him back but got no detailed information from him. I assumed I would get a readout or something from him. Went for the titration. Again sleep doctor called and told me where I needed to go to get my equipment. I finally got my Rx from the DME. This was the first time I saw any results from my test. I was also given a copy of the Sales/Delivery Order. In one section of Comments or Special Instructions : "CPAP S/U: RESPIRONICS C-FLEX 3, 15CWP, 20MIN RAMP, H.HUMID AND CHAMBER, TUBING, FILTERS, MASK/HDGR PT PREF-SMALL QUATTRO USED DURING PAP TITRATION0, PLEASE PROVIDE PT W/ HUMIDIFIER CLEANING INSTRUCTIONS. COMPLIANCE DOWNLOADS: 3MOS & 1YR- SEND DOWNLOADS TO DR.XXXXX."

Dr. X is the cardiologist, not the doctor who wrote the RX.I will not see Dr.X until Oct-Nov.

Also on this order is a list of the equipment delivered, but it lists the ResMed S9 Elite and, except for the Quattro mask, all the equipment is from ResMed. I received the Respironics equipment, not ResMed.

My questions:

Shouldn't I be seeing Dr. A, who read the test results and ordered the titration and equipment, and not Dr. X the cardiologist? (I don't have a heart condition.)

Why does the delivery ticket say one machine when I got the other?

Three months between readings sounds like a long time to wait for results, doesn't it?

Sorry for the long post and thanks to all of you for your knowledge and kindness!

Maddie

Hi, ugogirl/Maddie. In answer to your question in the title of this thread, yes (unfortunately), it is normal.

ugogirl wrote: My questions:

Shouldn't I be seeing Dr. A, who read the test results and ordered the titration and equipment, and not Dr. X the cardiologist? (I don't have a heart condition.)

Sometimes, the physician who reads and interprets the sleep study does just that (and only that). My initial sleep study reports came from just such a doctor; he didn't see patients at all. He was affiliated with the clinic where my studies were done, and that's all he did - interpret studies and forward reports to other physicians. If your doctor is not well-versed in sleep apnea (and most aren't), you might consider finding one who is. (Still no guarantees, however; I've consulted two board-certified sleep docs, neither of whom has helped me become successful with my therapy. I've gotten there by following the advice I was given here on this forum and managing my therapy myself.)

Why does the delivery ticket say one machine when I got the other?

DME goof. Not uncommon.

Three months between readings sounds like a long time to wait for results, doesn't it?

Understandably, you're confusing "compliance" reporting with "efficacy" information. You won't be getting any "results" from a compliance download (which is what the prescription specifies). Compliance information is for insurance purposes. It reports how much you're using the machine, because the insurance company wants to be sure you're complying with the therapy before they agree to keep paying for the equipment.

As newbies, we're told that the information from the machine will be downloaded at certain intervals, and we walk away thinking that someone will be monitoring our treatment to be sure it's working for us as it should. But compliance information (how much you use the machine) has nothing to do with efficacy data (how well the therapy is working).

What's important to you is the efficacy data. If your cardiologist (or the DME or any other doc you might consult with) has the Respironics software, you can appeal to them to read the data from the card in your machine on a regular basis (say, every week or two) and give you a printout of the detailed results (not just a summary). If you can't arrange that, then you can purchase the software and a card reader (see https://www.cpap.com/productpage/respir ... eader.html) and monitor your own therapy (which is what most of us here choose to do).

The whole process is a learning curve, but you can get there with the help of this forum. Read as much as you can here, keep asking questions, and hang in there! It's definitely worth the hassle.

Hope that's helpful.

Hello,

Strange with the doctor situation. My advice too would be to find a sleep specialist, one who is respected and motivated. The first time I had a test, the general doctor sent me for the test and the results were examined by a doctor that I never saw (this is the wrong approach) I had my results given to me by my general doctor who didn't know what to do as the doctor said I had no apnea.

I was not happy with it and I made an investigation as to who were most active in this field. The doctor I then saw was a specialist in this field, immediately you could see that he was asking structured questions and knew exactly what he was talking about. He told me that diagnosing sleep apnea and other sleep disorders must be done by the same doctor covering different areas. The first is the interview with the patient to see exactly what the problem is and to ask relevant questions, this must be accompanied by the second part which is a physical examination. Finally, the sleep test will provide some results that support the other areas. The basis for good treatment is having a doctor that is familiar with all of these and NOT just reading the results from the machine, this can give false negatives.

Bleeping Beauty- I understand what yoiu mean about the difference between compliance and efficacy.Thanks for that info. So then the efficacy report would be read by the DME and sent to the cardiolgist? I plan on calling the DME this afternoon to see if they will send me copies of the efficacy report. I have to mail them the SD card on Thursday.


Guest/Chief- I think the Dr. who interpreted the results is a specialist in sleep disorders. I can't understand why I then would need two drs for this. I will question the need for the Cardiologist tomorrow when I go to my regular doctror for my annual check up.

I'll let you both know what I find out. If I could afford the software, I would order it right away. Sometime in the future I will get it. I think with the help of this board and the software, I 'll be able to monitor myself. Thanks again... I'll be back with more questions I'm sure

ugogirl wrote:Bleeping Beauty- I understand what yoiu mean about the difference between compliance and efficacy.Thanks for that info. So then the efficacy report would be read by the DME and sent to the cardiolgist? I plan on calling the DME this afternoon to see if they will send me copies of the efficacy report. I have to mail them the SD card on Thursday.

In theory, yes. But since the prescription specifies "compliance downloads," that may be all the DME is willing to provide.

I sincerely hope they'll agree to give you the detailed data. If they will, specify that you want the Daily Detail reports (one page for each night of therapy). Summary pages are pretty useless.

Good luck!

If you can afford it, I would buy the corresponding software and view the data. I just got my software yesterday and found out the night before I must have awoke and turned off my cpap went back to sleep and turned it back on 2 hours later !!

The silly 7 and 30 day averages that these machines report on the LCDs are pretty useless. I have a followup appt with my ENT in 6 weeks. I can't wait to bring the printouts and see what he recommends, if anything.

Well, I called the DME this afternoon and found out that Dr.X is really a Sleep Specialist working with a Pulmonary Group, which makes more sense to me !
I asked if they would send me a copy of each daily report and was told I would get a summary.They send the report to Dr.A and he sends the info to Dr.X. I have an appointment with Dr.X on 9/2 so maybe he will give me a full copy. I guess I'll need to invest the $ for the software. One thing I'm afraid of is getting too paranoid about results. If I have daily info I don't want to get panicky if the results aren't what I expect! I know how I can be sometimes! But on the other hand,
I''d like to know how things are going.

Maddie

You won't get panicky...you will just have more info. I don't look at my info every day...just once in awhile. You will know how you are doing by how you feel in the morning and during the day.

ugogirl wrote:Well, I called the DME this afternoon and found out that Dr.X is really a Sleep Specialist working with a Pulmonary Group, which makes more sense to me !
I asked if they would send me a copy of each daily report and was told I would get a summary.They send the report to Dr.A and he sends the info to Dr.X. I have an appointment with Dr.X on 9/2 so maybe he will give me a full copy. I guess I'll need to invest the $ for the software. One thing I'm afraid of is getting too paranoid about results. If I have daily info I don't want to get panicky if the results aren't what I expect! I know how I can be sometimes! But on the other hand,
I''d like to know how things are going.

Maddie

When you go to the doctor, ask for a copy of the scored summaries of the sleep study and the titration study. These reports are YOURS and you have a right to them. They set the baseline for your diagnosis of SA and your response to treatment with cpap during the titration study.

Exactly which cpap did they give you. Is it a Respironics "Pro" or some other model? The difference is important because only the Pro models collect efficacy data. Lesser model cpaps by Respironics will only collect compliance data.

It's likely that you will have a 30 day window with your DEM to return your cpap for a different model. You might wish to take advantage of that. There should be no charge for the upgrade.

While you're at it, you may wish to push for an apap (auto pap) instead of a cpap. Apaps can be run in cpap mode but allow you the flexibility to use in auto-mode; this may be important to you, depending on specifics of your SA. There also should be no charge for upgrade to an apap.