Doctor Issues
My first time posting and I am a new CPAP user.
I need opinions. I've purchased my first CPAP machine, a DreamStation 500 Auto with humidifier from an individual on the Facebook marketplace. It was brand new, still in the box with zero hours for $500. My DME company (or was going to be) had contacted me for my first machine order and had given me a quote of $950 + tax (10%) for a Dreamstation 400 as prescribed from my Doctor. Well, I bought the 500 model, which is the Auto version.
I had contacted my Doctor's office prior to the purchase to see what they had to say, but had not heard back from them after about 3 days, and I didn't want the deal to slip away so I bought it.
Keep in mind that I am having to do this out of pocket since I have one of the Obummercare plans with a $2800 deductible (this is not the cheapest plan, mind you, but that is another issue).
My doctor's nurse who finally talked with me today after having called them back, was up in arms about me having purchased outside of the DME. Who was going to set up my machine? I can't provide the reports needed by the doctor? Etcetera, etcetera! I told her that I had set up the machine and it wasn't working for me at the 8cm he had ordered and that I had it set to auto, which was working fine for me. Oh boy, you can't change what the doctor has prescribed, and on, and on. I finally asked her if they were going to work with me or if I needed to find another physician. She toned down then.
She said that I wouldn't be able to provide the reports that the doctor needs and I told her that I was using Sleepyhead software and that I was pulling the reports everyday myself to look at them. She had never heard of Sleepyhead nor were they aware of how to pull it off of my machine had I taken it in, which I offered to do. Good Grief! So now that I am off to a rough start even before the first follow-up visit after my sleep study, I just need some advice. I may have not come across as too congenial (haha) today. Have I really screwed up? Can I do this without a DME or will I need to still go and buy a $1100 machine and use this one as a backup?
I also had to change the 8cm pressure that he ordered on his prescription to AUTO which worked much better. Using his fixed setting of 8cm, my AHI was 16.94, last night under AUTO, it was 2.78.
Thanks all for the input!
RE: Doctor Issues
(Not so)Stupid1,
This sounds remarkably familiar to my story - for me I simply wasn't prepared to spend $2600 on a machine I could get for $900 (Scottish heritage) so I didn't and yes they too were up in arms at the audacity.
What I discovered was that mask fit is an art not a science and does not go by recommendation of others but actually by face shape and size etc and that this could get very costly very quickly by ordering masks cheaply online. I also discovered that my DME would take back and change any mask that didn't work and so it made massive sense to spend more and buy masks from them until I found what I needed........ and that buying a mask or two and a pillow really sweetened things up with them.
Success so far for me has been a combination of help from this forum augmented by my sleep doc - my advice would be figure out how to get the best of both. I'm now running with AHI's I didn't think possible just a few short weeks ago by questioning and trusting advice from both angles, don't sour a relationship that might prove invaluable would be my advice
Rob
RE: Doctor Issues
Thank you for your input. I will try to tread carefully in my dealings with both the DME and the Doctor. I am so totally new to this having never had to get any "durable medical equipment" before, that I am unaware as to how all of that works. It may have come across the wrong way when I asked her if I needed to look elsewhere, but I really wasn't sure whether they would even work with someone outside of their DME. I don't know how it works, like I said, so it wasn't meant to be a confrontational threat.
Do I just print off the reports from Sleepyhead and take or send to my doctor in advance? What reports do they need? I am willing to work with them, if they are willing to work with me. I just don't like someone telling me how to spend my own money, you know.
RE: Doctor Issues
Just bring the SD card out of your machine and they can pull the data from it same way you do.
Do be really careful to write protect the card before downloading to Sleepyhead and unprotect it again before putting it back in the machine - I had some lost data in the first couple of weeks due to messing that up.
Post some of your charts and the experts will be along to offer any advice based on the charts
Rob
RE: Doctor Issues
G'day Stupid1, welcome to Apnea Board. I think you need to change your user name before you go much further, as you're obviously not stupid.
As a gross generalisation, the medical industry like to be in control of things, and they like things to conform to their norms. That makes for an easier life, less time to spend on each patient and more dollars per hour of revenue. You've upset the applecart by going outside the system but they'll get over it. As Technopauper said, don't burn your bridges - you might need to use the doctor and DME in future. But really, apnea medicine is not rocket science, and many of our members have been successfully managing their own treatment for years.
Your doctor won't have SleepyHead but should have the manufacturer's own software which can read the relevant data from your SD card. But you could also take in some printouts from SleepyHead, which will save them the effort and should greatly impress them that you know what you're doing.
RE: Doctor Issues
Welcome, stupid1.
Offer to print reports for your doctor with SleepyHead or you could download Encore Pro and use it to print your reports. Encore Pro is the program a DME uses to print the reports. It is, much less user friendly than SleepyHead. In the mean time, if you feel you need help or advice, post some SleepyHead charts and members of the forum will be able to help you optimize your treatment or answer any questions you may have. There are links in my signature to instructions on organizing charts and posting them.
Your doctors nurse’s statements may not reflect how your for doctor feels. You will need copies of all of you records such as the detailed report on your sleep study. It is best to get the raw data as well. You will also need copies of prescriptions for your machine as well as consumable items such as masks, hoses, etc. Since you will be paying out of pocket you may need them. Having copies of your records will also make it easer if it furans out you have to change doctors.
Good luck with your treatment and sleep well.
RE: Doctor Issues
Even if you think you are "Stupid One" your post says otherwise. I do not like to disrespect doctors and DME clinicians but if it weren't for Sleepyhead I would probably have given up on sleep apnea a long time ago. In one year I have had 5 Dme's and 2 Sleep Doctors. One DME in Ohio and 4 in Arkansas. Since I was retiring at the end of February 2017.(new $3000 deductible) I needed to get it all wrapped up by the end of the year as I wouldn't have Medicare B until about April when I was moving closer to my kids and grandkids. The DME in Ohio lost my contact number and did not call me until late January when I only had Medicare A. My first sleep study was requested by a NP (nurse practitioner) due to my regular doctor having issues with Obamacare and for some reason could not accept my employers Blue Cross anymore.
After moving, I was told Arkansas would not accept my prescription from a DME, hence the 2nd sleep study. Amazing how they both were different. So far I have had 2 Dme's. First one does not answer phone calls or voicemails. I returned all equipment in 9 days. Second DME wanted to charge me for masks after the first two didn't work. Medicare would only pay for the initial mask until 6 months were up. On a retirement budget I could not afford masks at $150.00 and up. Quit them after 45 days. Like you, I bought a Dreamstation with 45 total hours for $300.00. Although this wasn't my first choice it was a great price and the machine works fine.
After discovering Sleepyhead and with their talented qualified people I stumbled through mask leaks, crazy AHI numbers and other concerns. Many have to go it alone because sleep doctors seem to have too many patients on their plate to give any person the time he/she needs. I actually had a DME clinician tell me " I don't have time to look over 1000 patients and monitor their progress, so I hire a software company to monitor the really bad patients." Of course I got up and sang the song "Another one bites the dust" as I departed. The 3rd DME only carried Respironics machines and I wanted a Resmed, and the last one never even returned my calls. Sleepyhead answers all my questions and I have gone from out of control to <2.00 thanks to NO sleep doctor or DME's. All the DME's and my doctors deny ever hearing of "Sleepyhead". This explains why up to 50% drop away from Cpap therapy. I bet it is no where near that percentage with Sleepyhead due to all the good advise and support you will receive. How in the world does the sleep medical profession, not have heard of "Sleepyhead"? Very simple, They don't listen to their patients. You have found a forum that does listen. Please remember it's a journey and is not simple, but very doable. You already have the guts to speak your mind and can get a great education from this forum. God Bless.
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RE: Doctor Issues
Surprisingly my doc here in Germany, after the titration night asked if i read out the data myself and whether i use resscan or sleepyhead. I feel sorry for you guys. Move over here.
RE: Doctor Issues
Hi Stupid1,
First off, you made the correct decision in bypassing your DME and buying out of pocket with such a high insurance deductible. Not to mention your doctor perscribed the DreamStation 400 instead of the Auto machine.
Second, your doctor should be willing to work with you. As others have stated, take your SD card to the doctor and let him download to his software. He is more than likely using Encore software. At the same time, you can print out #SleepyHead reports for the doctor to look at. (Be sure to copy your SD card before bringing it to your doctor.)
Your DME probably won’t work with you on setting up your machine as you didn’t purchase it from them.
No big deal! You can, and have already set it up yourself.  And of course, you will receive help and guidance here if you want. Keep in mind that you can still use your DME or any DME for purchase of your supplies.
Good job on getting your own machine, but try to maintain a good relationship with your doctor as you never know when you may need him/her.
Get a copy of your prescription, and sleep study if you had one. These are your medical records, and you are entitled to them.
http://www.apneaboard.com/wiki/index.php...with_a_DME
RE: Doctor Issues
As others have said, you did the right thing for you and got a better machine for less money. The Dreamstation Auto uses the same software and produces the same reports as the Pro, so that is not a real issue. Most doctor's offices don't look at anything but the compliance data and may look at AHI in general to see if you are doing okay. Most members on the forum find that if they don't manage their own treatment, it sure isn't going to come from the doctor unless there is a really significant problem.
If you do provide your SD card to your doctor's office be sure to fully back up a copy first. SD cards have a tendency to come back erased or corrupted.
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