Take Control of Your Health

[Finally-Good-Sleep]

Hi!

For some reason, I am not the type of person that ever posts on bulletin boards, but I have a fair amount to say right now and I think some of it might be helpful to others! The following are just my opinions and can not be held liable for any of you legal types.

My topics are:
1. Taking Control of Your Own Health - Doctors, Hopsitals, Insurance Companies, and Medical Suppliers - "The Scam"
2. Choosing the Right Equipment - CPAP = ResMed S9 Auto with Humidifier and Climate Hose - BiPAP = Philips Respironics System One REMstar BiPAP Auto with Bi-Flex and Humidifier and Hose Cover - Mask - Mirage Quattro™ Full Face CPAP Mask with Headgear
3. Idea to Help Reduce Claustrophobia - Fan on low settings towards your face
4. Software - EncorePro2 on Windows 7, VMWare, SQL Server 2008, and Database Logins/Passwords - Torrent
5. Hardware Setup - Access Your Own Settings - Search Online

First, this site has been invaluable. Looking back, I have had sleep apnea for years and didn't know it. About 30 years ago, as a teenager, I went in for a sleep study as I was waking up tired, fatigued, and dark circles under my eyes. Interesting enough, the study I had done 30 years ago felt EXACTLY the same as it did last month! The only difference in my opinion was that they didn't find anything 30 years ago. I swear, the technology looked exactly the same, which was surprising as I am into technology and I would have thought there would be better methods for detection.

1. Taking Control of Your Own Health - Doctors, Hopsitals, Insurance Companies, and Medical Suppliers - "The Scam"

After being told that not only is my snoring loud and frequent, but that I stop breathing for long durations, I finally decided to request a sleep study from my new doctor (didn't have health insurance until recently). The doctor sent me to this hospital in Washington DC, which was really not great. The room was clinical, was kicked out at 6 a.m., the clinician barely spoke English, which was a problem when I was asking questions, and since they started so late, I only was able to sleep for 5 hours on the first test. The second sleep study with the CPAP/BiPAP was even worse than the first one, at the same hospital and same clinician.

I told my doctor that I wanted to use an online medical supplier and he said, “oh no, I have a good supplier that I use and trust. You never know what you get on the Internet and these units need to be adjusted or repaired often.” This appears to be total BS in that I swear the way he acted, he was getting a kick-back.

I heard that many of the DME's charge 2-3 times the cost of the Internet units to the insurance company. Even at 75% payment against the negotiated rates, the DME's can still make a good profit, let alone charge you the difference. Try to find a DME that will accept whatever the insurance pays with no out of pocket costs. If you are in the Washington DC area, feel free to contact me and I will let you know who I used. I am still amazed that a doctor will write you a prescription for a CPAP/BiPAP and letting the DME decide which one is best for you (the one they have the most of in stock or make the most profit). It is like saying you need to search the Internet, so here is a prescription for a computer. There are all types of equipment out there with various options and masks, just like computers, the right one for you should be an informed decision, not just accepting what is given to you. After reviewing many posts, the equipment makes all the difference. I can tell you, the software access is so helpful to peace of mind too.

2. Choosing the Right Equipment - CPAP = ResMed S9 Auto with Humidifier and Climate Hose - BiPAP = Philips RespironicsSystem One REMstar BiPAP Auto with Bi-Flex and Humidifier and Hose Cover - Mask - Mirage Quattro™ Full Face CPAP Mask with Headgear

When my titration results came back, I was told that I needed a BiPAP, not a CPAP. I was disappointed as all my research showed that the ResMed S9 Auto with the humidifier and climate hose seemed to be the best out there for functionality, reputation, noise, software, and user reviews. I decided on the Philips RespironicsSystem One REMstar BiPAP Auto with Bi-Flex and Humidifier and Hose Cover. For the mask, after all my research, I decided on the Mirage Quattro™ Full Face CPAP Mask with Headgear. Mirage makes another great mask, the Ultra, but I like the fact that you can adjust the top part of the mask with a plastic control as well as the fact that the tabs on the top don’t seem to have the same weakness as the Ultra. In all my research, the ResMed software seems to be more detailed than the Philips. I unfortunately jumped the gun and bought the latest software and manuals on a bid site, but I only paid $25.

The doctor originally did not write up a prescription for the "Auto" feature, but after reading all the features with the auto and how it actually "responds" vs. "reports and detects only" on the Pro model, I asked him to write up the “Auto”. As it turned out, it was a good idea. I LOVE the auto feature! The settings that they wanted me on manually were way too high, which was because I was feeling claustrophobic during the sleep study and I was stressed out, not to mention using a cheap hospital mask. The settings with the auto were close to the original manual settings, but too much pressure for me with the right mask.

As it turned out, the hospital wanted me to use “their” DME, no surprise there, kick-backs to the hospital. The doctor even had the nerve to tell me that the hospitals get a kick-back, as if he didn’t! When I compared his DME to the recommendation by the hospital, the hospital recommendation covered my FULL equipment without any additional costs, while the doctor’s recommendation wanted to bill me about $500 for my “portion”. I told the doctor that I was going with the hospital’s recommendation for the DME, and he was infuriated! He said, “I don’t know if they are a fly by night company, I don’t trust them, I don’t like them, it is at your own risk.” I said, “I will chance it rather than pay $500 for a company you have worked with in the past.” He actually canceled my appointment with them the first time as he said I was going to use his DME! Can you believe he had the nerve to cancel an appointment for delivery for equipment that I setup before the July 4th holiday (Friday), so that I would use his company?

Let me tell you, this place was truly a great DME! The staff was so professional; it was actually a sleep study center that is equivalent to a 5 star hotel. If you contact me, I will be more than glad to let you know who I used, but I am not sure I can mention it here? I would go back there in a heartbeat for my next sleep study. It was truly first class all the way.

3. Idea to Help Reduce Claustrophobia - Fan on low settings towards your face

I have found that if I have a fan blowing on my face and chest area at the lowest speed, I sleep much better and don't feel claustrophobic. I totally suggest you try this, even if you aren’t claustrophobic, as it seems to make the who mask awareness become a non-issue.

4. Software - EncorePro2 on Windows 7, VMWare, SQL Server 2008, and Database Logins/Passwords - Torrent

Ok, this is a bit tricky…but, I can tell you, it is CRITICAL for you to know how well you are doing or not doing, without waiting for a month or longer for a doctor’s visit and the results to be reviewed by the DME. For my BiPAP, I found a version of the software on a Torrent site. Even though I am a technical person, I am not that trusting of Torrent’s. My life and health is important to me, so I took the chance. It says it will not work on 64 bit Operating Systems (Windows 7 OS, Vista, etc.) without using a VMWare type of setup. Well, they are correct to a point. I did set it up with VMWare Workstation (30 day trial, but you can get a free VMWare Viewer, which will do mostly the same thing as I found out later). Bottom line to get this to work on Vista or Windows 7, install VMWare, XP Service Pack 2 or 3 in a VMWare session, install SQL Server 2008, including the Tools (very important), backup the EncoreDB and EncoreWarehouse databases (.bak files), copy the Respironics directory and subdirectories over to the Windows 7 program files directory, install SQL Server 2008, restore the backed up files (.bak), run a script (search for transfer SQL 2005 to SQL 2008 script online) on the VMWare session Master database to generate the create Login and Password scripts, and finally, run the create Login and Password scripts on the Windows 7 SQL Server Master database. Run the EncorePro2.exe file on the Windows 7 system and you should be good to go.

FYI – This took me 3 days of messing around to get this working. I suggest you back-up the data cards daily, before you upload them to the software. I keep a copy for each day, along with all the reports.

My AHI is down to 0.7 after a week of using this BiPAP system.

5. Hardware Setup - Access Your Own Settings - Search Online

I don’t want to violate any terms and I don’t want to be held accountable for people changing their settings, again, just my opinion, but if you search online, you will find the steps to enter the clinician mode for your BiPAP. I would ONLY recommend it for the “Auto BiPAP” and I would test out your minimum settings close to any known recommendation settings by your doctor. I would also check with your doctor before going into “Auto” mode, but for me, this was the best.

FYI – Just today, I ordered a Wireless Pulse Oximeter to keep an eye on my Blood Oxygen and Pulse Rate. With the wireless transmitter/receiver and unit, my cost was about $160, but I think well worth the cost of a good steak dinner to know what is going on with your health.

Good luck everyone and I hope I was able to give something back in return for all your good information.

[KatieW]

Welcome to the forum, and thank you for your very informative post.

[Finally-Good-Sleep]

Thanks! I really appreciate this forum, it has been a tremendous help!

[LinkC]

You paint with a very wide brush.

Perhaps YOUR Doctor won't help YOU, but there are many here who have excellent Doctors. We work WITH them in managing our therapy.

If you want a more responsive Doctor, why aren't you seeing one. The phone book is full of alternatives...

[roster]

F-G-S,

Thanks for the nice writeup. Your post can help newbies. So many of them think they get a prescription and a machine and everything is taken care of.

CPAP is a do-it-yourself project, even if you have good caring doctors. None of them sleep in your bed while trying to breathe through your airway.

I am so glad you figured it out.

Regards,

[Finally-Good-Sleep]

Yes, you are right, I was just sharing my experience. Some people may have better results with their doctor. I have moved a few times for work over the years and I didn't have a family doctor after mine retired. I have been searching for a good doctor. It took me forever to find the one I have now that accepts new patients and is experienced. He is actually very open and decent when I am standing/sitting right in front of him. His office staff and waiting room is another story. It is not uncommon to wait 2 hours past your appointment to finally get to see him. I called several times (as instructed) to get my blood test results and sleep study results, as well as the BiPAP Rx.

I would like nothing more than to work WITH my doctor and to have a great doctor. I am leaving the DC area, back to Philadelphia, PA or Norfolk, VA. I will probably be changing insurance coverage again, so finding another doctor will be back on the list. Trust me, I did as much research in trying to find a doctor that takes new patients, even the ones that don't who I get a referal to from friends. It was easier getting a letter from the White House (less than 7 days) than getting a doctor's appointment. I am seriously not kidding.

I still like my doctor and appreciate all he has done, it was just this DME situation that really brought out a different side of him. Canceling my appointment with another DME, because he wanted to use "his" DME, that was too much. Also, the guilt and fear he tried to instill by using the DME the hospital recommended was truly unprofessional, or at the least, unnecessary. As it turned out, the place I went to for my equipment was incredible! So much so, that I took photos to show him next time I have another office visit (if I see him again with the move).

My main point is this; (1) research and get the equipment that you want, not what is decided for you (at least talk about options with your doctor), (2) get the software so that you know how well or not you are doing (I am still angry that it doesn't automatically come with the unit and it is so hard to get a copy - a legal copy I would gladly pay for), (3) seriously consider an "auto" unit of CPAP/BiPAP as they actually "respond" to events vs. "reporting and detecting".

Thanks,

Robert

[Finally-Good-Sleep]

Thanks Roster,

It is because of caring people like you and everyone on this forum that post. There is a part of me that is actually angry at how nothing was said by the doctor or the hospital about machine/mask options. Even the DME, which is great, was more of an order taker than offering advice. https://www.cpap.com reviews and feedback was extremely helpful, as well as this forum and another apnea support organization.

Thanks again for everything...keep up the good work and information.

[torontoCPAPguy]

We're not sure but we think his name might be rooster instead of roster. I am so confused.

Welcome to the forum. You are amongst friends. We friends - we band of brothers and sisters.

You will find much wisdom on here; far superior to what your sleep doc can provide but not for one moment would I undertake my own therapy without the consultation of my specialists and I have more than you can shake a stick at.

Gotta go. There's a thunderstorm outside and I want to go and enjoy it while I can.

Tomorrow will be a good day for gliding/soaring and I am going to take my son up to soar with the eagles in Orangeville Ontario. Or he is going to take me actually. He has his pilot's wings but not his motor vehicle license. He can fly but not drive as of yet. I gave up my license when we had kids and am going to find my logbook and re-qualify; hopefully tomorrow and write the written exam Tuesday if I can. With all of the tests they have put me through this past year I should be fit as a fiddle for flying.

[unadog]

Congrats on getting on track! Sounds like your therapy is going quite well.

Nice writeup on your experience. I think you will find that what you said describes the "core experience" of most of us here. Almost the cpaptalk.com "religion" if you will. How to handle your therapy, and common pitfalls along the way ....

That part with the doctor and the DME sounds odd. Most docs seem to partition what they think their role is, and seem not to care much at all about DME's and machines.

I wouldn't worry too much about looping back to that doctor if you are moving on. Hopefully you will find one who is more supportive of you working with your data to manage/help manage your own therapy.

Good luck! Welcome.

Best,
Michael

[GumbyCT]

While it is true that not everyone has problems with their sleep doc - I think it is safe to say that more people do have problems than do not with doc and/or DME. I think the majority at this site have had problems which is what drove them to look online and find cpaptalk.com

Count me among the grateful to have found this place.

Robert, Welcome aboard. I am sure your post will help many, for many years to come.

[Finally-Good-Sleep]

Thanks Michael!

Yeah, I thought the relationship between the DME and the doctor was strange too, but apparently, they have done a lot of work together. When he mentioned the kick-backs the hospital gets, I thought that was strange too. Oh well, no big deal, but it was at the time when I wanted my machine before the July 4th holiday.

Thanks again for your kind words and support.

Robert

[Finally-Good-Sleep]

Thanks GumbyCT!

After 3 days getting the SQL Server 2008 Express to work with Windows 7 and Encore Pro 2.2, I am sure I will get a few PM's from users trying to accomplish the same. This was a challenging process to get working natively in Windows 7, without relying on VMWare (not that VMWare is a bad thing).

All the best and sleep well everyone!

Robert

[xintianb]

on the VMWare session Master database to generate the create Login and Password scripts, and finally, run the create Login and Password scripts on the Windows 7 SQL Server Master database. Run the EncorePro2.exe file on the Windows 7 system and you should be good to go.

[Wulfman]

You paint with a very wide brush.

Perhaps YOUR Doctor won't help YOU, but there are many here who have excellent Doctors. We work WITH them in managing our therapy.

If you want a more responsive Doctor, why aren't you seeing one. The phone book is full of alternatives...

Not everywhere. Five years ago, mine was "the only game in town"......and even after this amount of time, the options are still darned few.....unless you like to travel LONG distances.

Anyway, like I have always said......it's YOUR therapy and YOUR life. YOU need to take control of YOUR therapy.


Den

[DreamStalker]

You paint with a very wide brush.

Perhaps YOUR Doctor won't help YOU, but there are many here who have excellent Doctors. We work WITH them in managing our therapy.

If you want a more responsive Doctor, why aren't you seeing one. The phone book is full of alternatives...

Not everywhere. Five years ago, mine was "the only game in town"......and even after this amount of time, the options are still darned few.....unless you like to travel LONG distances.

Anyway, like I have always said......it's YOUR therapy and YOUR life. YOU need to take control of YOUR therapy.


Den

And I would add to that that the reason most find their way to this site is because they didn't have good doctors ... at least for treatment portion of their condition. The sleep docs may have all the gadgetry to diagnose but as Den said, the patient is responsible after that ... simply because the treatment requires unique customization that the docs are unwilling or unable to provide.