Plmnb's Never Ending OSA Journey (Data)

[Sleeprider]

They're right, your AHI (what they're looking at) does not justify BiLevel... because it's under the arbitrary threshold of 5. However, the flow limitations on your OSCAR data, strongly indicates, that you would be better treated with BiLevel. If you could get another sleep study covered under insurance or medicare that looked at flow limitations, that would be ideal.

Actually, she frequently exceeds an AHI of 5, but her flow limitations and events are clustered.  The way a sleep study works, they will titrate CPAP pressure and move to bilevel if they don't achieve efficacy. The results will depend more on whether she is in a position that tends to result in events or not, rather than the actual pressure in therapy.  It presents an interesting dilemma.

Bonjour's advise is to have a study that measures flow limits. That's true, but may need to be worded differently to focus on the RERA that arise from flow limitation.  The lack of refreshing sleep is a product of respiratory event related arousal, so the test needs to consider RDI not just AHI. 

There is a reason so many members elect to go around the doctors and insurance companies and buy their first bilevel machine. It's easier, cheaper and a lot less stressful.

[ApneaQuestions]

Sorry to hear about the hassles you are experiencing related to health records.

There are two ways you can handle this.  

1) One involves asking your current health care provider to make an explicit request to the two previous providers for your records.  You will sign a HIPPA release form allowing your current provider to do this.

2) The second approach is more work for you but let's you get your hands on the medical records to keep for future reference. Basically, go in person to the two previous providers and sign a HIPPA release form requesting your own records for your own purposes.  They are obliged to provide them to you and are obliged to keep them for a certain period of time in the US. I believe it's 7 years.  Then give copies to your current provider. EDIT: If you call them first you may be able to send the form by email. The form contains your SS# so be careful how you email it. Maybe they have a secure portal that would work better... your choice.

Avoid any talk of reporting people to medical boards as you do this because it just puts them on the defensive anticipating lawsuits etc. On the HIPPA form that may ask why you want the information, just check the box that says "For my own personal records"

I just went through this process for my entire medical history from all providers and specialists and now have my own personal database of information.

In the past, I was in a State-funded system that centralizes all medical records so that any provider in any city can access them and give the best-possible continuous treatments whenever you move.  I was frustrated and somewhat horrified to find out how unreliable the data transfer is in the US.  It's not uncommon for your current provider to have lots of missing information causing them to retest the SAME thing repeatedly or be totally oblivious to prior diagnoses.

The only issue you may face is if any of your records are older than (I believe) 7 years old.  
As you stated... they are YOUR records and all providers know that.

The only data that may be withheld (I believe) is certain information related to mental diagnoses/impressions and (I think) possibly STDs.
I'm not sure why that is... they all need to be treated just like any other illness. Perhaps there is still too much stigma attached to those topics.

[yankees123]

Just to confirm, is it correct that if someone is suffering from significant flow limitations it goes under the heading of UARS?  Don’t you also have to have significant Rera’s also that shows up on the sleep study?
My sleep study didn’t show rera’s but I suffer from significant flow limitations.  
Just want to clarify classification of UARS, thanks.

[Plmnb]

I’m having a nervous breakdown.

First dr. office no longer has my original few studies and operative records because they were over 7 years old this year.

Second dr. office has the first dr. records because they obtained them early last year. This past Nov 8th the second dr. office was sent a faxed, signed request from myself and the third dr.,office for ALL medical records to be sent to third dr. office.

When I actually went to the third dr. I had been told all records had been received.

Today, when I called the third dr. about the bilevel machine and was told I needed a new sleep study to get a bilevel I found out that dr. three never received any prior records even after repeated requests from dr. three made in Nov.

Now dr. three has stated they refaxed request to dr. two who by the way 1/2 hour ago told me I could come get the records but it would cost me $20.

I told them b.s. There was never supposed to be a charge because the request WAS originally sent from the third dr. and there is no charge for those requests.

By the time I hung up there wasn’t going to be a charge to re-fax.

So far no records have been sent anywhere.

I have a call into my primary for anxiety medicine , which by the way I haven’t ever taken before in my life.

Damn, all I want is a good night sleep. Is this too much to expect?

What makes everything worse is that I still carry the vivid memory of what a refreshing night of sleep is like. The very first night I had a CPAP 7 years ago I woke up the first morning feeling absolutely fantastic! The best I have ever felt in my life. A miracle! The second day I woke up...it was back to misery. That refreshed, rested feeling never occurred again. Must be like what a drug addict feels like, trying to chase the level of euphoria that they never get after the first time.

[sheepless]

I can totally empathize with you. although you seem to have an unfortunate series of events, what with software problems on top of trying to make cpap work, this kind of stuff occurs all the time in all aspects of life. but it's a fact that most of us lack physical and emotional resources in the early stages of treatment due to a history of sleep deprivation. it's a tough row to hoe. unfortunately, all I can say is that there's a very good chance perseverance will pay off. I've seen it happen hundreds of times on this forum. the alternative, going without decent sleep, just isn't sustainable. I look forward to hearing your successes as they occur in the very near future.

[Plmnb]

THANK YOU SHEEPLESS!  I have no words to tell you how much your kind reply means to me at the moment.

It was just what I needed to hear at the moment.

Plmnb

[JoeyWallaby]

What is your current situation? Waiting for documents to be sent?

[Plmnb]

Hello JoeyWallaby.

By the time I tried to check with sleep dr. office three, the office was closed for the day. I’ll be calling this morning to follow up.

My primary dr. office was supposed to call me back regarding medication and another matter. By 4:30pm I had only received a call about the other matter and when I asked about the medication I was told the dr. still had not seen my request for medication. I was told my message was at the top and I would hear back. As of the moment, I have not had a call back. I shell follow up later this morning.

I fell asleep extremely early, about 9pm ish. Awoke at least once prior to this moment...1am.

[SuperSleeper]

Plmnb, glad you're so interested in fine-tuning your therapy.

Don't forget to stop and smell the roses, too.  Sometime, 'ya just gotta take a break from life when you get this frustrated.    Don't let the doctors control you or get you overly upset.  Just accept that they really don't care anywhere near about helping you as much as you care about helping you.  You can't change them, but their lack of attention to your needs can negatively affect you if you let it.  Take a break and enjoy life for a bit.  I know that's hard when you're sleep-deprived, but it's necessary for one's mental health as well.

Take time to do something you like to do... just because.  

You're in Florida, so getting outside in nature is very therapeutic.  Wish I could do that here, but the outdoors is covered in snow and it's going to get down to 16 degrees F this evening...  Take advantage of the good weather while you can.

I don't like to see good people negatively affected by what we call the "medical mafia".  

[JoeyWallaby]

You're going in the right direction... sadly sometimes we have to fight the system that should be working for us.