Oh, This Just Keeps Getting Better (Not!)

Madalot wrote: LOL -- I've done a fair amount of reading online and found that a lot (not all, but a lot) of sleep techs and RT's are taught and believe that no one needs a full face mask.

You mean, as in this post from a recently departed antagonist, er, I mean member?

when the CPAP is set at the right pressure using a nasal mask, the air pressure forces the mouth to stay closed

snuginarug wrote: (Question: if they HAVE a ventilator, why not use it? Duh.)

Madalot wrote: Their ventilator doesn't have AVAPS, which is the mode I use on mine. IF they can simulate AVAPS with the bipap S/T & the other equipment, that would be good since that's what I'm using.

It's seems I am in over my head. Well, I don't have to understand all of this to be part of your cheering section. I wish you luck.

((( hugs )))

M.D.Hosehead wrote:

Madalot wrote: LOL -- I've done a fair amount of reading online and found that a lot (not all, but a lot) of sleep techs and RT's are taught and believe that no one needs a full face mask.

You mean, as in this post from a recently departed antagonist, er, I mean member?

when the CPAP is set at the right pressure using a nasal mask, the air pressure forces the mouth to stay closed

LOL. I start out breathing perfectly through my nose, but I get congested during the night and CANNOT breathe through my nose. That's why I won't tape my mouth because it's not just that my mouth comes open, it does so because my nose gets plugged and I NEED to breathe through my mouth to, uh, breathe.

I understand that a nasal mask is probably preferable, but in some cases, a FFM is preferable over NOTHING. I am one of them. I struggled horribly with the nasal mask. I got the FFM I use now and that was the first night I used the mask all night.

snuginarug wrote:

snuginarug wrote: (Question: if they HAVE a ventilator, why not use it? Duh.)

Madalot wrote: Their ventilator doesn't have AVAPS, which is the mode I use on mine. IF they can simulate AVAPS with the bipap S/T & the other equipment, that would be good since that's what I'm using.

It's seems I am in over my head. Well, I don't have to understand all of this to be part of your cheering section. I wish you luck.

((( hugs )))

Thanks snug. You know I appreciate it. Don't worry about being in over your head -- I am too! I know this stuff because I've had to. Some of the things others talk about around here is way over my head too!

I'm wishing that sometime before the study you could ask your Dr (or even an assistant that you might have some rapport with) to notify the lab of your knowledge and close involvement in your own therapy and for you to be kept informed and have all your questions discussed thoroughly when you arrive. That's the part of this whole thing that makes my teeth hurt ! Keep up the good fight, you're almost there!

DoriC wrote:I'm wishing that sometime before the study you could ask your Dr (or even an assistant that you might have some rapport with) to notify the lab of your knowledge and close involvement in your own therapy and for you to be kept informed and have all your questions discussed thoroughly when you arrive. That's the part of this whole thing that makes my teeth hurt ! Keep up the good fight, you're almost there!

Thanks Dori -- I may ask my doctor to say something to them when I talk to her on Friday. I was pretty open with her today about how I felt I was being talked down to and I didn't appreciate it. Don't get me wrong as the man was as nice as he could be, but you could tell that he was talking down to me, assuming that I didn't understand anything.

I mean, I don't understand a fraction of all of this, but I have got the basics down and understand way more than a lot of people in my situation do.

Makes my teeth hurt too.

Madalot, I may have missed something along the way here. I remember you saying (I think) that at some time you talked to Respironics (the manufacturer of your ventilator??).

When I was having so much trouble I talked to the Resmed Rep at our support group meetings several times. I finally decided my next sleep study WAS going to be at a sleep lab using Resmed equipment despite I really liked my sleep lab and staff (they use Respironics equipment).I was adamant I wanted Resmed equipment used by someone who was experienced running PSGs w/Resmed equipment. When I asked the Resmed Rep who in our area was using Resmed in the lab the only nearby lab had no sleep pulmo on staff. Since I have COPD I was somewhat concerned about that. To make long story short (something I'm not particularly good at) my Resmed Rep who is both an RRT and an RPSGT offered to provide Resmed equipment and "observe" my PSG to assist the sleep tech as needed. We scheduled it for when he was making his rounds thru our area. I was thrilled and grateful - and so excited I didn't sleep for beans and the study was pretty much wasted. *sigh* I slept like 2 1/2 hours in 3 different sessions out of 7 hours bedtime. I cried on the way home and was depressed for days.

I just wonder if one of your ventilator's manufacturing Reps would be willing to work out something like that for you. Its a chance to demonstrate - and maybe sell - a ventilator to the sleep lab. Or at least build good will for the sale of their other equipment to this sleep lab in the future.

Slinky wrote:I just wonder if one of your ventilator's manufacturing Reps would be willing to work out something like that for you. Its a chance to demonstrate - and maybe sell - a ventilator to the sleep lab. Or at least build good will for the sale of their other equipment to this sleep lab in the future.

It was offered and my sleep lab refused. Obviously I wasn't privy to the actual conversations between the manufacturer and my sleep lab so I can't know for certain exactly what happened. I was told that the offer was made to supply a ventilator and train them on how to use it (plus provide an RT to assist with my study) but my sleep center declined.

I have no idea why? Money? Policy? Who knows.

That's why I either have to do the study with the "make shift" system that mimics mine (Bipap S/T w/AVAPS) or do the study on their existing ventilator in as close as mode as possible.

I'm sorry to hear that, Madalot. Are you really sure you want to continue dealing w/this particular sleep lab? Do you have any other sleep lab options? I'm really not any too impressed w/this bunch at all.

Maybe the manufacturer can recommend a sleep lab that has and users their/your ventilator??? Or do I vaguely remember there were "physical" reasons why you were reluctant or unable to use another sleep lab?

Slinky wrote:I'm sorry to hear that, Madalot. Are you really sure you want to continue dealing w/this particular sleep lab? Do you have any other sleep lab options? I'm really not any too impressed w/this bunch at all.

My sentiments exactly, Slinky.

This has continued to fly all over me from the first time Maddie mentioned the sleep lab's refusal to accept the offer of the manufacturer of her ventilator to provide a vent like hers and assist with the study:
At The End of My Rope
topic started by Madalot - Mar 2011
viewtopic.php?p=572684#p572684

Anyway... having gotten a re-rant out of the way...

This sounds promising:

Madalot wrote: Now -- apparently SOME of the bipap S/T machines can do AVAPS, but the machines my center has need another piece of equipment to use along with it. They have it, but have never used it and may not even remember that they have it. My contacts are working on getting the right person into the center to show them how to set up the bipap S/T to use with this other equipment to minic what I'm doing -- which is essentially bipap S/T with AVAPS.

If they cannot do that, my doctor has said she wants them to use their ventilator, probably in SIMV mode, which is similar to AVAPS. About as comparable as we're going to get using the different ventilators.

If your contacts and the sleep lab can gee and haw well together, the study could go well and shed light on what to do next.

You're doing all you can to dot the i's and cross the t's ahead of time.

Slinky wrote:I'm sorry to hear that, Madalot. Are you really sure you want to continue dealing w/this particular sleep lab? Do you have any other sleep lab options? I'm really not any too impressed w/this bunch at all.

Maybe the manufacturer can recommend a sleep lab that has and users their/your ventilator??? Or do I vaguely remember there were "physical" reasons why you were reluctant or unable to use another sleep lab?

You're not saying anything we haven't thought about. I stick with this particular lab because it's the one my doctor wants me to use. I stick with my doctor because all my neuros have said she is THE best at handling cases like mine. From what I understand, many doctors, treating a patient like me, will rush to invasive ventilation (trach) when the situation gets difficult. My pulmo has a deep rooted interest in non-invasive treatment.

That's the ONLY reason I stick with this lab. I checked out the other two labs that are within a reasonable distance and neither of them used my ventilator either.

rested gal wrote:If your contacts and the sleep lab can gee and haw well together, the study could go well and shed light on what to do next.

You're doing all you can to dot the i's and cross the t's ahead of time.

I appreciate that. For what it's worth, I agree with how you (and others) feel about this. It IS causing me a lot of stress and anxiety. Unfortunately, I don't live in an area where I have tons of choices. I am already established with this doctor and it's in my best interests to continue working with her.

Aside from the labs unwillingness to get my ventilator in, they've been very good. This refusal has left a negative impact on me though.

However, hopefully I won't have any trouble next week and this study will shed some light on the frequent arousals and resulting fatigue during the day.

Well, I wish you well and good luck, Maddie. But really that sleep lab has earned a well-deserved slap on the head from me! And whilst I can understand your feelings about your sleep doctor, she could use a slap on the head too just to get her thinking straighter. (((hugs)))

Hey, I"ve been there w/this darn COPD and OSA. There have been times I just got so tired and discouraged I quit "pushing" the sleep doctors for awhile. That's why it took me 17 months to get switched to a bi-level when right from the get-go after my sleep evaluation the sleep doctor had handwritten bi-level on my report. There were 3 alternating sleep doctors working that sleep lab. I "should" have followed that first sleep doctor when he left ..... ah well. LIve and learn.

Slinky wrote:Well, I wish you well and good luck, Maddie. But really that sleep lab has earned a well-deserved slap on the head from me! And whilst I can understand your feelings about your sleep doctor, she could use a slap on the head too just to get her thinking straighter. (((hugs)))

Hey, I"ve been there w/this darn COPD and OSA. There have been times I just got so tired and discouraged I quit "pushing" the sleep doctors for awhile. That's why it took me 17 months to get switched to a bi-level when right from the get-go after my sleep evaluation the sleep doctor had handwritten bi-level on my report. There were 3 alternating sleep doctors working that sleep lab. I "should" have followed that first sleep doctor when he left ..... ah well. LIve and learn.

I know what you mean. It does get discouraging sometimes, doesn't it?

My doctor works for a university and it's the university sleep lab she uses. Probably a policy thing where she kind of has to, you know?

Aside from the unwillingness to get my vent in, I haven't had any issues with this sleep lab. Of course, the last time I was there, I was totally ignorant about all of this stuff. I'm a lot more informed now.

I ran into a situation a couple of years ago: great sleep lab, great sleep lab staff, an SOB for a sleep doctor. And this at one of the leading health clinics in the country!!!!

Slinky wrote:I ran into a situation a couple of years ago: great sleep lab, great sleep lab staff, an SOB for a sleep doctor. And this at one of the leading health clinics in the country!!!!

Yes. Just because a person becomes a doctor doesn't necessarily mean they are nice or kind. I have had some of the greatest doctors in the world, but they are good people regardless of what they do for a living. I've also run into some real "winners" that are just awful people.

A lot of people put doctors on a pedestal and expect them to behave a certain way. Doctors are people just like the rest of us - some are nicer than others.

Despite some of the issues I've run into, I feel the doctors I have now do give me the best of all worlds (most of the time anyway). They know what they're doing and are also kind people.

Maddy,

I hope things do go well for you in your sleep study. It took so long to get to this point. I'll be thinking of you.

(((hugs)))