*UPDATED with my paper*Please take this poll / college paper

StuUnderPressure wrote:Does anyone know the exact date this forum was set up?

August 20-24, 2004?

jnk wrote:

StuUnderPressure wrote:Does anyone know the exact date this forum was set up?

August 20-24, 2004?

THANKS, I didn't think it was around when I got my 1st brick in Dec 2003

My DME only had two choices, ResMed S9 Autoset and the Respironics System 1 auto. Based on prior searching on the internet, I chose the Autoset.

MyIdaho wrote:My DME only had two choices, ResMed S9 Autoset and the Respironics System 1 auto. Based on prior searching on the internet, I chose the Autoset.

Now, why can't all DMEs think like that.

I had chosen "OTHER – I don’t fit any of these (please explain in a post below)" because my DME DIDN'T inform me of data capable machines how-ever when I had called into my insurance company to see how much I would be covered for, they informed me that they pay the equivalent of a basic machine, when I went back to my DME I asked about why they said "basic" and was then informed about the differences and what my PR1 machine is capable of.

I was diagnosed in 1995 and don't think there were any data-capable machines available.

blakepro wrote:

DreamStalker wrote:

blakepro wrote:Hello everyone, I’m currently putting together a debate paper for a college course I’m taking about patient rights and I’ve chosen to focus on how people with sleep apnea are treated by doctors and DMEs when they are first diagnosed.

Could you please take a moment to vote in my poll so I can use the statistics to back up my claims. (Or to help me relize I'm wrong)
If you feel like discussing the topic below that would be great too. If you do post about your experience below, may I please have permission to use your quote in my paper?
Any participation or help would be very appreciated.
Thanks.

For a statistical discussion, what exactly is your claim(s) ... hypothesis?

I guess we should have asked this from the start.

I'm in early drafts at this point and part of the process is engaging in a debate with a fellow student who tries to point out weak parts in your argument or help you understand the opposite position better. Here is a sample of part of my opening statement draft.

...the problem is, most people don’t even know they have it. And what’s worse, when they are diagnosed, they are typically kept in the dark about the variety of effective treatment options available to them. Instead, they are just given a very basic solution without any way to monitor the success of the treatment. Doing this is like keeping a diabetic person from checking their own blood sugar levels. I believe the patient should be informed and empowered with tools and information that will allow them to be involved in their treatment rather than having to rely solely on an occasional doctor visit to find out if the treatment is working effectively.

After engaging in some debate on the subject, my opposition questioned how I could know this is the case. It was pointed out that I have no evidence to prove that this is what happens to a lot of Apnea patients. They were right, I don't have any scientific studies or legitimate information sources that support my claim. I knew it was the case with myself and every single person I've met in person with the condition... I have also been kicking around this forum long enough to know this happens to a lot of us... Still, I couldn't be sure that I'm not just making an assumption here. SO I wanted to get the voice of the people here to find out how close to the truth I am. This will either shatter my claim, or strengthen it. - Granted, this is a non-scientific study, but it should be admissible in my case here with what I'm trying to do.

I do want to say that I really appreciate the support you are all showing and I appreciate your participation. We have a good community here and it means a lot to me that you are all willing to help by submitting your personal stories for consideration.

It appears you are needing to provide the factual premisses of your argument that -- "sleep apnea patients are not given proper equipment and/or knowledge to manage their sleep apnea condition unlike diabetic patients".

So first you have to show that sleep apnea patients need equipment and knowledge to manage their sleep apnea condition the way diabetic patients also need equipment and knowledge to manage their diabetic condition.

Second, you need to show that sleep apnea patients do not get the proper equipment, but more importantly, they do not get the knowledge they need to manage their sleep apnea condition.

If my assumptions about the argument you are attempting to debate is correct. I think two separate polls may serve you better ... one for each premise.

Just my 2 cents though I'm no debater nor do I play one on TV.

My sleep doctor reviewed my titration study results and sent me an email sharing that because the results were rather inconclusive in terms of the proper pressure setting she was writing a prescription for an autopap. I educated myself on exactly what that was by using the internet and on forums like this. On this forum I learned how important it was to have a fully data capable machine,

I was clueless when I got my apap two years ago. I hadn't really had many major health concerns before so I (foolishly) thought the doctors were giving me something that would fix me.

I struggled for a long time getting used to the machine, the mask (started with a Quattro ffm and moved to nasal pillows), and didn't know where to go for help. I tried calling the doctors office several times but the staff there was awful (doc was good). One time I called, tired, stressed out and asked if I could talk to my sleep doc. The answer was, "no"' so I asked if I could e-mail her and the answer was a nasty, "we can't be giving out no email addresses!" Needless to say, the conversation went downhill from there.

DME wasn't much help. Wouldn't call back for weeks. I have to order supplies monthly and they were so far behind filling orders that sometimes I would not get replacement parts for six to eight weeks, or never.

In desperation, I came to my friend, the internetz, and found this forum where I finally got some answers. I got the software for my apap that I thought was a brick and now I take care of my own sleep apnea. Don't intend to see a sleep doc again and will have my GP write an order if I need another sleep test.

So, in my case, I had no training, no clear line of who I was supposed to communicate a problem to, and I was blaming myself for not using my machine to the best effect. There definitely needs to be more help given to new apnea patients.

However, I have talked with several of my acquaintances who have cpap machines and they love them and don't really have problems. So it could be that the medical field does not follow up because they think the patient is adapting, while in reality many of the patients have quietly given up.

I couldn't give up because I didn't want to go back to Migraine Hell.

Giving this a bump back up because it would be cool if blakepro could hit 100 responses and have a pretty darn decent sample size for a college research project.

Just needs 8 more people to respond!

In late 2002, 13 months after my doctor requested a sleep study for me, I had a total hissy fit at the healthcare facility's 'complaint' department and was sent for my study. They had kept putting me at low priority for actually having the study done because I am female and they thought apnea was primarily a "fat old male' issue... not applicable to women who could not be trusted to accurately report their health status due to being menopausal and therefore stupid. Right. Major apnea.
I raised the roof and talked about legal rights. The complaint department's doctor in chief reviewed my records and saw for 15 years I had been coming in complaining about sleep apnea symptoms and had been ignored.... even through 8 years of continuous bronchitis and antibiotics ... they had never considered apnea.
Since money does not bring back past years of living we agreed they would do WAAAY MORE proactive teaching about sleep apnea and women to their doctors. They did. I saw LOTS more women as patients in the sleep department getting equipment in later years.
Part of it was the knowledge base at that time. Part of it was the low regard for accurate reporting by women.
I was never told to change mask, never given data about my condition. What the provider did last time I went through them, several years ago, was tell you the cpap setting you should use ~~ as the full and entire report from a night of sleep study. AND they didn't get it or like it when I said that was mushroom theory for controlling a medical situation. I no longer get help through that provider for this condition.
AND, I now always take a witness to medical appointments unless it is so clear (eg: severed right hand held in left hand) that I believe I will be heard and understood and not blown off. And, I do currently like and fairly much trust my doctors. Being a doctor is tough, so much is still not known about medical issues and health. As patients we want doctors to know all ... and the science is still being learned.
THANK HEAVENS for the wonderful people on this forum and for being able to buy to my own equipment online.

I was not told but I was informed, so I asked for an auto machine but was told this was not necessary.

Can't find where to vote. Isn't there just a box to check or something easy? My Dr told me nothing, but this forum taught me what I needed to know before I had my my recent sleep study, and I requested S9 APAP w/heated humidifier & Climateline hose. I tried Swift FX mask at sleep study, and liked it, so I told them at sleep study center what I wanted them to have my Dr order for machine & accessories. I had a CPAP in the 90s with most uncomfortable mask, gave up back then, actually got rid of the machine to a friend who wanted it, and was worried about getting used to CPAP & mask this time, because of that. There have been such improvements in treatment options for sleep apnea since then, I was surprised.

My doctor said I needed CPAP after my first sleep study, and at my follow-up visit to get the results, he set me up with his "preferred provider" and said that they would provide me with my machine at my titration study. I checked with my insurance company, and the DME that the doctor used was not in my network, so I cancelled out with his DME and had them send a prescription to an in-network DME.

After reading many posts on this forum, some critical of the DME that I was going to be using, I called and asked what machine they were providing for me. I was ready for a fight, but they gave me the model number for the machine they were providing, and it was a full data machine. I was given instructions basically for how to turn it off and on, and no information on the data that was available.

At my next follow-up with the doctor, I took the SD card in and was told by the doctor that he didn't have the capability to read it. Well, I could read the card, and I told him that I was concerned because my AHI was still running in the 12 to 16 range. He said that numbers don't tell the whole story, and I should just go by how much better I felt.

The clinician's manual (Prominently marked on the cover, "Remove this manual before dispensing machine to patient.") was still with my machine, so I started bumping my pressure a half CM at a time and monitoring for two weeks. After the second bump, my AHI was at an acceptable level (4 to 5). I have a follow-up with the doctor next month. If he is still not interested in talking about my data, or makes any negative comment about my being proactive with my therapy, I will be looking for another doctor.

So, I have a data capable machine, and I was not informed about the data capabilities or its significance, and my doctor is not the least bit interested in the data either.

I knew nothing about data capable machines. I was not told nor did I knew I had a choice.....
I didn't stick with it on my first dx nor my second. This time around I was not told either but was given a data capable machine but everything I've learned ive learned here on this forum.