How many times can RT's be wrong?

[congahands]

I just had my 10th night on the hose.

I was initially prescribed for a pressure of 16 with a c-flex of 1. When I went to the DME, I was pushing for the Auto machine(instead of the Remstar Pro w/c-flex), and told the RT that I was concerned about how hard it would be to exhale against a pressure of 16. She told me that I should probably set the c-flex at 2 or 3 anyway. So for the first four nights, at the RT's suggestion, I used a c-flex of 2. The other issue is that she set the machine to NOT show me Average AHI, and Average Leak. So one of the first things I did was find out how to show the AHI and Leak averages.

There were two problems that I noticed as soon as I got my software and card reader. My OA averaged 11 and the apneas were heavily skewed towards the end of the night ( a.k.a. Prime REM time, at least for me, but I think for most people ). I think someone here suggested lowering my c-flex to 1 (Sorry, I don't remember who right now). So on night 5 I did and, lo and behold, my AHI dropped to an average of about 4.5 although it was still skewed toward the end of the night. The first 2/3'rds of the night were almost all 0, 1, or 2 apneas per hour. Then I'd pop up to 8 or 10 for the last 2 or 3 hours. I also felt about the same.

After 3 nights with a c-flex of 1, my RT called to see how I was doing. I told her I had changed the c-flex to 1, that the apneas were heavily scewed, and that I was using the mask all night from the first night, but that I didn't feel any better. I told her that after another night or two, assuming that my AHI stayed low, I wanted to turn off c-flex completely to see if I did any better. She told me she didn't think changing c-flex had made any difference, and please call her before I turned off c-flex.

I called yesterday and my RT wasn't there(doesn't work Wednesday's) so would I talk to the other RT? I said sure. I told her the whole story about how changing c-flex from 2 to 1 have made a big difference on AHI on the report, but not how I felt. She was completely against my changing my settings on my own (There are a lot of things in there that you can mess up). "I've never seen a c-flex change make any difference. I really don't think that changing it changed anything. But I'll program a new card with c-flex off and drop it in the mail tonight. Just send back your current card so we can pull the data off of it. Oh and ask your doctor about the skewing of your apneas. I've never seen that before." Well, a new card won't really work, because I want to try it for 2 or 3 nights before I make a decision, and go back to the original card if it works best. So she said, "I think you really just need to wait to speak with your sleep doctor." She also said that a AHI of 3 or 4 was all I should ever expect. She'd seen an AHI of 1 once, 2 a few times, but never anything below 1. I said, okay, thanks, and hung up.

By the way, I did mention this site, and cpap.com. She knew that I knew quite a bit about how cpap works. I mentioned cpap.com because I wanted to know if I could get the F&P Oracle mask from them or would I have to order it on my own. It's a cost thing because it's considered a combo mask and insurance won't cover it. I said, "Oh that's okay, I can get one on https://www.cpap.com for about $90, and less if one comes up on cpapauction.com."

I went back and forth some yesterday about whether I should just go ahead and change it, and risk hurting the RT's feelings, or wait for the doctor. I decided that my health is more important than the RT's feelings so I "broke in" to my machine and turned off c-flex.

Last night my OA was up 1.5 but instead of being skewed toward the end of the night. They were actually skewed toward the front of the night. In the last 3 hours my apneas were 4, 4, and 1.

So first my c-flex didn't matter, second the machine wasn't set up to let me see the AHI and Leak averages, third the first RT said that c-flex had no effect on my apneas dropping, fourth turning off c-flex was difficult and would mess up my machine, fifth changing my c-flex couldn't have had any effect on my AHI, sixth an AHI of 3 or 4 was the best I could expect (I've seen plenty of reports here with AHI's under 1), and seventh turning off c-flex would have no effect on REM time apneas.

I'm so glad you people are here to let people know about how to deal with RT's and DME's.

Thanks!

[Paul56]

It would seem that in a number of cases simply firing the RT & DME would lead to less stress and better therapy. Odd how that works.

[rested gal]

She also said that a AHI of 3 or 4 was all I should ever expect. She'd seen an AHI of 1 once, 2 a few times, but never anything below 1.

LOL!!!

I went back and forth some yesterday about whether I should just go ahead and change it, and risk hurting the RT's feelings, or wait for the doctor. I decided that my health is more important than the RT's feelings so I "broke in" to my machine and turned off c-flex.

Good for you, congahands.

I'm so glad you people are here to let people know about how to deal with RT's and DME's.

I'm so glad you're dealing with your own treatment so well. WTG, congahands!

[krousseau]

Don't worry about hurting anyone else's feeling when it comes to your treatment.
Learn to manage your day-to-day care.
And a word of caution about day-to-day care and changes in settings. Don't rely on just 1, 2, or 3 nights of data when making changes. You could cloud your decision making by changes too often or too many at one time. You want to adjust to the mask and make sure you have tweaked a mask to optimal use. You want to know which change leads to improvement or decline in treatment. And you want to allow for "natural"/normal factors (besides treatment) to average out. I like to give each change at least a week before changing settings again. Things like a larger meal than usual, sleep position, alcohol, a cold, different bed, time changes, seasons, warmth of room, hormonal fluctuations, on and on, can all affect sleep/REM/SDB so give yourself time to be able to sort things out. Keep a sleep diary with notes about anything that stands out about the day and the sleep period that ends the day. Notice any associations with your menstrual cycle. If post menopausal there can still be cyclical changes. Using a big calendar for sleep notes can be helpful in seeing possible patterns. Of course there can be times when a change causes a problem so obvious that you shouldn't leave it for a week.
Come to this forum for some help when you are unsure. Reading the posts every day when I first started treatment alerted me to things I would have never thought about. It also helped me prevent problems.

[echo]

I got you BEAT hands down.
These are TRUE things my SLEEP DOCTOR said to me (from a certified, university hospital sleep clinic):

- You're leaking out of your mouth, eh? Turn the pressure down to 4cm. Needless to say I didn't do THAT!
- Oh you have a cold and you're congested? That's OK, the effects of CPAP easily last several days, so you're OK not to use it while you've got a cold.
- Oh you want a Full face mask? Well that's the last resort, let's see what else we can do before going that route. (then, see above...).
- APAP, hmmm... well you shouldn't use an APAP because they respond too slowly to apnea's to be effective for treatment. Also they can completley misinterpret your breathing since that's all they measure - it won't know if you're just taking a deep breath and will therefore do the wrong thing
- Why do want a Data capable machine? Well we already discussed how they can misinterpret events, so no the data isn't very reliable.



That's when cpap.com started receiving all of my CPAP business, and I stopped believing in Santa Claus and the tooth fairy

[deerslayer]

Welcome to our world Conga.... it has been my experiance that when dealing with the rt, you're better off playing the part of sgt. shultz on Hogans heros & say I know nothINGGG saves getting beat with a rubber hose lol

[Pekoepup]

I think these particular RT's were misinformed but I don't think it is fair to bash the profession. RT's play a major role in critical care every day and save many people's lives. They work in neonatal ICU's, PICU's, emergency rooms, adult ICU's and are on critical care transport teams. They have a wealth of knowledge in regards to the respiratory system and ventilation in general. They work side by side with physicians and nurses in every hospital in the US and Canada and these hospitals would cease to function without their expertise.

By asking the question,"How many times can RT's be wrong?" is like asking, "How many times can a doctor be wrong or a mechanic or dentist or repairman, etc?" They can be wrong a bunch of times. They take the knowledge they have and the experience they have gained and try to make an educated guess, and that is all it really is. It is a guess. An educated one but only a guess. If I had a dollar for every mis-diagnosis that I have ever been given by a physician, I would be a rich women. These specific RT's may have had minimal experience in the field of sleep medicine (it is not actually part of the RT curriculum) and experience. They may have been at the bottom of their class. Different states have different education and licensing requirements for RT's. You may have heard the joke that goes, "What do you call a doctor that finished at the bottom of their class?" Doctor! The same goes for a RT that finishes at the bottom of their class. They still finished so they are still RT's but they may not be the best out there.

Just like in every profession, I have experienced the good, the bad and the really bad. I guess the good news is that you have educated yourself and you can choose to take or not take their advice.