First night on CPAP.

echo, in that link you provided (thanks by the way), it says the doctor has 30 days to respond to a request for an appointment. Isn't that conveniant for him?

carbonman, I was setting up an argument. Two things are needed to get a patient information on their own health. Caring about the patient and the ability to provide that information.

My doctor and DME don't pass the first test.

The sleep techs at least pass the first test, but then get stopped at the second.

Yep.......turn off your machine before you take off your mask. It'll screw up your leak rate numbers and if you really want to know how your therapy is working, that's one of the components to follow and where you can compare "apples to apples" from night to night.

Den

They have to give you your test results. Those are your medical records and you are entitled to them BY LAW. If your doctor's office tries to deny you access to them, tell them that it's a HIPAA (pronounced HIP-UH) violation and that you will be contacting JCAHO (JAY-CO), the Joint Commission on Accreditation of Healthcare Organizations and the US Department of Health and Human Services, Office for Civil Rights.

Being out of HIPAA compliance is a pretty serious thing and health orgs don't like the thought of JCAHO swooping down on them. It could mean a lawsuit and a stiff fine.

I would like to say to everyone, There is no state in this country that can deny someone access to their own health information, unless they have legal ground to do so that is documented. Mentally competent people have the right to know why they are receiving any medical care and if it is necessary and going to improve symptoms. You have the right to have your sleep study reviewed with you during the set up of equipment by your DME provider, if you ask. I as a clinician always review the patient rights and their sleep study, I let them know what the final report says verbatim and that the pressures they have been prescribed helped bring the AHI down and their oxygen levels up, during the study. Are you guys being followed up by the DME provider during the initial therapy, say the first 72hrs, 2wks, 30days? I am ashamed that a licensed healthcare professional isn't more concerned with this lifestyle change for their patients. MY goal is always helping the patient achieve success. But, I guess we all don't see it as more than a JOB. Sorry.

Cat

Cat wrote: Are you guys being followed up by the DME provider during the initial therapy, say the first 72hrs, 2wks, 30days? I am ashamed that a licensed healthcare professional isn't more concerned with this lifestyle change for their patients. MY goal is always helping the patient achieve success. But, I guess we all don't see it as more than a JOB. Sorry.

HAHAHAHAHAHAHAHAHAHAHAHAHAHAHA.

Oh man, Cat is a comedian as well as a "clinician in this field".

I don't think many of us would be here if we got proper or even ADEQUATE care from our health professionals. You can look in any thread and see that 90% of us were told we have sleep apnea, handed a CPAP machine and an ill-fitting mask, and told to come back in a few months.

Some of us were never informed as to how severe the sleep apnea is. Some don't even know WHAT sleep apnea is! A lot of us were titrated to the wrong pressure because our insurance won't pay for a full night titration and they guess at a pressure from >4 hours of data. Many of us are given machines that tell us nothing other than how long we use it. And even if we have a fully data capable machine, we aren't always informed of how to use it. Only the DOCTOR is allowed to see that data!

People are on this forum to get advice on how to fight for proper therapy from a medical field that seems reluctant to help us or oftentimes CLUELESS as to how to help us.

Getting advice in nearly every thread from a "clinician" that we should speak to a doctor or a DME (who only exists to make money off of us) is nothing short of laughable.

Cat wrote:I am ashamed that a licensed healthcare professional isn't more concerned with this lifestyle change for their patients. MY goal is always helping the patient achieve success. But, I guess we all don't see it as more than a JOB. Sorry.

Cat

Cat, thank you for saying that. It's obvious that you do care.

There have been several RTs, DME employees, and sleep techs who post fairly regularly on this board, who feel the same way you do, Cat. I'm sure they cringe at a lot of the advice and suggestions we cpap users toss around so freely. I hope they are also picking up some things that help their "patients."

There have also been quite a few who are appalled at what they see going on here (and the initial reception they get when they say "you should always consult your doctor") that they stomp out. Can be "different" here (to say the least ) since most cpap users who file through the DMEs' doors unquestioningly accept whatever they are told and given. Can be a shock to see an apnea board populated with cpap users who are absolutely determined to learn as much as possible about their condition and treatment. CPAP users who are willing and able to take control of it themselves when the health care professionals they've been in contact with are too busy, too condescending, or...really don't know what to do. Many people don't have insurance and literally have to take up the reins of their own treatment as best they can.

I hope you'll continue reading and posting here, Cat. Might take a thick skin and a lot of understanding. But you really are welcome here. You care.

rested gal wrote:

Cat wrote:I am ashamed that a licensed healthcare professional isn't more concerned with this lifestyle change for their patients. MY goal is always helping the patient achieve success. But, I guess we all don't see it as more than a JOB. Sorry.

Cat

Cat, thank you for saying that. It's obvious that you do care.

There have been several RTs, DME employees, and sleep techs who post fairly regularly on this board, who feel the same way you do, Cat. I'm sure they cringe at a lot of the advice and suggestions we cpap users toss around so freely. I hope they are also picking up some things that help their "patients."

There have also been quite a few who are appalled at what they see going on here. Seeing cpap users absolutely determined to learn as much as possible about their condition and treatment, and taking control of it themselves when the health care professionals they've been in contact with are too busy, too condescending, or...really don't know what to do. Many people don't have insurance and literally have to take up the reins of their own treatment as best they can.

I hope you'll continue reading and posting here, Cat. Might take a thick skin and a lot of understanding. But you really are welcome here. You care.

Cat,

I was getting ready to write something to the same effect that rested gal posted, but I see she beat me to it.

So, "ditto" to what she wrote. Please continue to hang around here and contribute/partake in this forum. From the years I've spent on this forum (and my own experiences), I've come to the conclusion that this portion of the medical profession is seriously "lacking", in many ways.

Best wishes,

Den

congahands wrote:
If you have some suggestions for working with a doctor that sure appears to be a prima donna, other than giving him one more (undeserved) chance, and then firing him, I'm open to suggestions.

Perhaps let the sleep dr. in on a little secret: That you're not an idiot. Sounds strong, I know, but docs deal with all types. Let him/her know that you're educated, knowledgeable, know your rights and would love to be pro-active in your health--with his help.

Unfortunately doctors do not have the luxury of assuming that their patients are intelligent. My daughter is a pharmacist, and learned that some people just have no common sense--that's why she needs to supplement a written warning with a verbal warning to customers/patients to not *eat* suppositories...

All in Knots

Amen to having Caring medical folks contribute their input here !!!! i am coming up on nearly 1 year on cpap. my smart card was requested for review after the first 30 days. after that i have been flying solo by the seat of my pants, well actually by software & the kind folks on this board to know is everything

Cat, I appreciate you being here too. I really do.

I guess I've opened a can of worms so to speak. To try to clarify, nobody has said that I can't have my records "eventually". The nurse that I spoke to at the sleep doctors office told me I could have a copy of my report once I had spoken to him at my follow up appointment. I think the excuse is that he doesn't want to give any patient raw data without being there to discuss it with them. In some ways that makes sense. Apparently he doesn't want to have an initial consult to "prescribe" a sleep study, a second appointment to discuss the sleep study, and prescribe the CPAP titration, a third appointment to discuss the prescription, and a fourth a month later to evaluate the first month of therapy. However, I think an appointment to setup the sleep study, a second to discuss results and a third to evaluate after the first month would help out a whole lot.

My clinicians were both excellent but they were not allowed to tell me anything as that was the doctors responsibility. As a matter of fact the clinician gave me a sheet at the end of the initial study that said the doctors nurse would be calling me within 72 hours to discuss my results. All that nurse did was schedule my titration with no explanation at all.

All my DME had was a prescription for my CPAP. I can't imagine what follow-up with my RT from the DME could be other than am I being compliant. I've changed my machine through the clinical interface to allow me to see my AHI and Leak rate but the RT doesn't know that. The RT doesn't know that my AHI was 13 last night, and apparently I am not supposed to know.

Even when I do take my card back to the DME I won't see my RT. All I know is that the RT is going to call me.

Allinknots, I made sure my sleep doc knew that I was more educated than the standard patient. I had done a ton of reading already and he just kept looking impatient and saying we'll see exactly what's going on with the sleep test. I guess the four minutes he spent with me was putting him behind schedule.

That's okay, there are a lot of sleep doctors in this area.

Thanks again all.

congahands wrote:I guess the four minutes he spent with me was putting him behind schedule.

That's okay, there are a lot of sleep doctors in this area.

I don't much like the doc's attitude, conga, but I sure like yours.

Okay, night 3...

Changes: The only change was how I managed my bathroom breaks. I shut off the machine and took off my mask. When I got back to bed, I put the mask on and it started automatically. I only got 7 hours of sleep, but the mask seems to be a non-issue from bothering me. My only awareness of it is whether it is leaking, and when I move around, I am awake enough to make sure I don't scew it so it's leaking.

My AHI was better at 6.7, so the three day trend is 8.5, 10.4, 6.7 but 6.7 still doesn't seem very good compared to everyone else.

My leak rate was a little lower at my leak avg was 39.7, so the trend is 45.6, 38.2, 39.7. So that's a little confusing.

So I am really confused now. Turning off the machine during bathroom breaks raised the leak rate marginally, but my AHI went down.

The good news is that my card reader and Encore Viewer software are in a UPS truck, or depot in my city. I'll have them tomorrow so I'll have a better idea what is going tomorrow evening.

Since I don't know anything about AI vs. HI in either of my studies, as of yet, I really don't know what if any changes to make.

One last piece of good news, I was pretty tired this morning. I'm not sure why, maybe since I slept only 7 hour last night. Anyway, I fell asleep on the couch this morning and then woke up around 9:15. I went upstairs and put on my mask and hose, and lay down to take a nap. I was out within a minute, and woke up 90 minutes later feeling as if no time had passed, but feeling much more rested. Being able to fall asleep in 30 seconds with a mask on feels like a significant victory.

One other thing I learned this afternoon. The chart in the Mirage Quattro User Guide shows a Vent Flow Rate (@ 16 cm H2O) of 48 L/min +/- 6 L/min. I am guessing that "Vent Flow Rate" and "Leak Rate" are the same. If that is right, all of my leak rates are below "normal".

Any suggestions are welcome, and appreciated.

Thanks!
CH

congahands wrote:Cat, I appreciate you being here too. I really do.

I guess I've opened a can of worms so to speak. To try to clarify, nobody has said that I can't have my records "eventually". The nurse that I spoke to at the sleep doctors office told me I could have a copy of my report once I had spoken to him at my follow up appointment. I think the excuse is that he doesn't want to give any patient raw data without being there to discuss it with them. In some ways that makes sense. Apparently he doesn't want to have an initial consult to "prescribe" a sleep study, a second appointment to discuss the sleep study, and prescribe the CPAP titration, a third appointment to discuss the prescription, and a fourth a month later to evaluate the first month of therapy. However, I think an appointment to setup the sleep study, a second to discuss results and a third to evaluate after the first month would help out a whole lot.

My clinicians were both excellent but they were not allowed to tell me anything as that was the doctors responsibility. As a matter of fact the clinician gave me a sheet at the end of the initial study that said the doctors nurse would be calling me within 72 hours to discuss my results. All that nurse did was schedule my titration with no explanation at all.

All my DME had was a prescription for my CPAP. I can't imagine what follow-up with my RT from the DME could be other than am I being compliant. I've changed my machine through the clinical interface to allow me to see my AHI and Leak rate but the RT doesn't know that. The RT doesn't know that my AHI was 13 last night, and apparently I am not supposed to know.

Even when I do take my card back to the DME I won't see my RT. All I know is that the RT is going to call me.

Allinknots, I made sure my sleep doc knew that I was more educated than the standard patient. I had done a ton of reading already and he just kept looking impatient and saying we'll see exactly what's going on with the sleep test. I guess the four minutes he spent with me was putting him behind schedule.

That's okay, there are a lot of sleep doctors in this area.

Thanks again all.

It looks like you are in Tennessee so you are legally entitled to a copy of everything in your medical file. All you have to do is sign the release.

Welcome and best wishes!

Conga, I have chatted with you a few nights, glad to hear you are taking to it like a duck in water. Call your sleep lab and request a copy of your report (with condensed graphs, about 5 pages) and if they give you a hard time, remind them it is your records and you have a right to see them by HIPAA.

It took me about 3 days to get mine faxxed to me. Everything else that has happened pretty seems to be an exception to what I have heard here. I've had no problems getting my info and I have only been on therapy for 3 months and have 3 different masks already from my DME. I have the original (a Resmed Micro Mirage), a Resmed Activa that was loaned to me by them that they ultimately gave me because the Micro seemed too small after a month. I just went in today and got a Respironics Comfort Gel. Anthem will allow me to get a mask every 3 months but a headgear every 6 months, so the DME is loaning me the head gear in advance.

Even better is that the staff actually goes onto this forum so they can "understand from a patient's point of view" about this therapy. It shows.

I wish that more people had these 'good' experiences so all I can do is be gracious for it. If anyone is wondering, I use Health Management Services https://www.hmssleep.com/main.php

Okay, the lesson here is, if you keep calling enough, you can get your information. I have the appointment setup with my doctor for 11/19. I did what at least gasp and insomniak suggested and called the sleep lab. They transfered me to medical records, and I can go in and sign a release and they will hand me a copy of my records from the sleep study.

So all the medical people here that were saying, "You have to get that information from your doctor." were either mis-informed or being deceptive.

It's too late for today, so I'll get them Monday.

Meanwhile, I am waiting, not very patiently for my card reader and software to be delivered to the house. My leaks were still around 40 and my AHI was up again to 11.5. So I'm up and down like a yo-yo. 8.5, 13.5, 6.7, 11.5

I'm glad that I took to my mask like a duck to water (34 therapy hours in 4 nights). But I'm beginning to wonder if my pressure is wrong. I used to be mostly a back sleeper so that's the way I tried to stay at the CPAP titration. However, since I became a hose head I am pretty much 50/50 left side and right side. I don't get on my back because it pushes my head forward and causes leaks. So maybe my pressure is too high???

My software and reader this afternoon, and my reports on Monday may offer some clues.

CH