Oh, This Just Keeps Getting Better (Not!)

Sometimes I wonder who I ticked off in another life that warrants this. Seriously.

It took me quite a while on the phone today to get through to someone at the sleep center that would tell me what my doctor ordered. He said that the original order called for a study on their ventilator, but was changed VERBALLY after talking with the sleep tech, from a vent study to -- (you're gonna love this) --

Bipap S/T on highest sensitivity, with supplemental oxygen.

I'm not sure what in the hell is going on, but I can speculate. My DME/RT contacted Respironics when I couldn't consistently trip the PR System One bipap and was told that the PR System One is as sensitive as any of them get and we'd be better off moving to the ventilator, especially considering my diagnosis. My doctor didn't fight them on it, so that's what happened.

A couple people here DID comment about how I could have used other equipment (like a bipap S/T or ASV or AVAPS) but I was told that in the interest of being adaptable for the future, my medical team moved me to the ventilator.

I'm thinking that the sleep tech/RT at the sleep center convinced my doctor that I don't need a ventilator and that we can accomplish everything we need to with a bipap S/T.

You know -- I have no clue what I really need. But one thing that I am certain of is that I am caught up in all this with people bound and determined to be right and leaving me to suffer the consequences for it.

I have calls into everybody -- my doctor (a real "CALL ME ASAP" call), my DME & RT.

I cannot believe this. If I hadn't been downright bitchy (sorry) and insisted that the sleep center tell me, I would have shown up there Tuesday night to find out THEN that it was going to be a bipap study.

Hugs!

Keep a paper trail of all this, if only to make you feel better about having overcome all this craziness! Maybe you can write the next best seller with it.

This is where you need to jot down your total history - in detail.

It sounds like someone has a "theory" of how to proceed, but there has been no education done to critically evaluate that "theory" for its merits.

Doctors have the most education and are charged to look after our health, but your case is a little outside the norm. Your experience so far may qualify you at a higher level than your "professional team" even though they have more education.

You and your doctor need to have a "chat" to fully educate you how a sleep study using BiPap is going to provide the information needed to help you have already tried BiPap and it didn't help.

There is a mental and spiritual aspect to health. If you have a study done with the understanding of what is going on and the attitude that it will provide information that can help you, the chance of a successful study are great. On the other hand, it you have a sour attitude and have some fear going into the study, your expectations of failure may be realized.

I think your doctor should educate you to the point that you look forward to the study and are restless with the anticipation of what it may reveal.

If you find yourself getting stressed out about all of this, you can weigh the effects of this additional stress with the effects of your poor sleep and you may want to consider delaying the study until everything gets worked out and everyone is on the same page.

I think HoseCrusher is right in the sense of attitude towards medical testing.

But---I think it's really bad form for the sleep center and doc to have made a decision about changing the machine to one you've already tried and failed upon without bothering to let you know. I can see why you're angry, upset, concerned, feeling like you've got bad karma, etc.

I hope the "CALL ME ASAP" message for your doctor results in the doctor calling you. And explaining why she authorized the change in machine for the study. Because quite frankly it just doesn't sound kosher: A tech in a sleep lab who's never met you talks your doctor into switching from "test on vent using settings as close to home vent" to "test on BiPAP S/T" given that patient has failed BiPAP before and PR said given your medical history a move to a vent was reasonable some 6 to 9 months (or more ago)?

Document everything you can on paper. If you can remember who you finally spoke to at the sleep center, write that name down before you forget it. Take notes when talking to the doctor. Take notes when talking to anybody else about this sleep study too.

And if the doc does NOT call you back: Call again, right before the office closes today if you can. And bright and early tomorrow morning. And again tomorrow afternoon. Keep calling until you get through the obstacle course set up between you and the doc by the receptionist if you have to. And don't feel like you need to apologize for being a nuisance. (But do try to remain polite to the receptionist.)

Here is my wild unfounded guess:

Sounds to me as if either (1) insurance got involved in the decision or (2) someone is afraid that insurance will get involved. But, then, that's what I always assume when illogical things start to happen. It may be that someone has to put a checkmark next to "failed bipap s/t" on some insurance form somewhere and panicked.

A broken system built on fear (as in everyone being afraid of not getting paid) and (to badly mix a metaphor) on cookie-cutter-style pigeonholing can get in the way of good docs and good labs doing good work.

No one has good "karma" when it comes to dealing with insurance companies. One day they'll get theirs.

But I could be wrong. I often am.

Also don't forget - these people WORK for you! You, through the money you have paid your insurance, pay their salary.
They are your EMPLOYEES (indirectly).
They are not "doing you a favour", they work for you!

They sometimes forget that their work exist because of the patients, not in spite of the patients.

I have been on the phone all afternoon. It's kind of a good news, bad news thing...

The good news is that my doctor did NOT order a basic bipap S/T study. The bad news is that things are still a bit up in the air about what exactly is going to happen. This is what I understand is going on...

Originally, they told her they could NOT get THEIR ventilator in for my study (I don't get that, but whatever). They said the best they could do was a bipap S/T. She wasn't happy about it, but felt that they could still see what is happening with my arousals on that, even though it isn't what I'm using.

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.

I also asked her to please tell them to let me use my mask and not force me into a nasal mask (the guy told me they prefer those and would try to convince me to use it). She assured me she would and said to bring mine with me. She also said that she THOUGHT that you had to use a full face mask on a ventilator anyway. I don't know about that, but do know if you want me compliant, don't force a nasal mask on me.

My doctor has asked me to contact her again on Friday to make sure everything is arranged to everyone's satisfaction.

It was probably good that I called and talked to them this morning because I am likely to get talked down to next week. I understand that they don't know me from anybody, but to be given a lecture on the evils of full face masks and elementary explanations of IPAP and EPAP is a little insulting to me. I need to be ready to convince them to talk to me like I have a brain and explain to me exactly what they're doing.

I still contend that this shouldn't be this stressful and difficult. I am tired of having to scream and claw at everybody to get things done the right way.

Madalot wrote: I still contend that this shouldn't be this stressful and difficult. I am tired of having to scream and claw at everybody to get things done the right way.

You are right. It shouldn't be this stressful and difficult. *sigh*

Glad you called and pushed about the machine they were planning on using. Finding out about this mess now is much better than finding out when you are led to the bedroom.

Good to hear that your doctor did NOT just "ok" a switch of machine without your knowledge.

Sad to here that it looks like you will be using equipment that they "own, but forgot about." Doesn't bode well does it? Let's hope that they both FIND and READ the clinical manual for the piece of equipment that's needed to make the BiPAP S/T work like something with AVAPS.

Sad to see that you'll likely be treated like a know-nothing. And really sad that you expect them to do a song-and-dance trying to persuade you to use a mask that you know won't work for you: Evils of a FFM? Evils? Hey, personally I could not stand the thought of a FFM, but I'd never describe them as evil. See if you can get the doctor's office to put in writing that you are to bring and use your own FFM. Maybe that will shut them up about the mask so that you can get some sleep and they can figure out what's causing the arousals.

robysue wrote:Sad to see that you'll likely be treated like a know-nothing. And really sad that you expect them to do a song-and-dance trying to persuade you to use a mask that you know won't work for you: Evils of a FFM? Evils? Hey, personally I could not stand the thought of a FFM, but I'd never describe them as evil. See if you can get the doctor's office to put in writing that you are to bring and use your own FFM. Maybe that will shut them up about the mask so that you can get some sleep and they can figure out what's causing the arousals.

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. Some of them are willing to relent if the patient is insistent, but some are downright nasty about it. I do see the reasoning that a nasal is probably a better choice, but there are some people (like me) that simply cannot adjust to a nasal mask and in order to ensure compliance, a full face mask is a viable alternative. If I hadn't been allowed to use a full face mask, I wouldn't have been able to stick with it.

In the sleep center's defense, they don't do many complicated studies and have never NEEDED to do an AVAPS study. Truth be told, I don't think they are familiar with the technology.

I was very relieved that my doctor hadn't changed the order from what we had discussed. That was really bugging me. She said that she spoke with the day technician and the message got relayed in such a fashion that I was told she changed the order. I'm very glad she called me back and set the record straight on that.

I also asked her to put it on the order that I can use my mask of choice. I told her I would bring a brand new, never used one that I have and she said "Good, you do that."

When I contact her on Friday to, as she put it "see where everything is at that point" I plan to ask her what *I* can do IF they give me a hard time about anything that is not what she and I agreed to. I'm hoping she will have a fail safe plan (like her being available that night) in case I run into any trouble.

Hopefully, everything will be straightened out by Friday.

Got my fingers crossed, Mad.

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

Wow! I sincerely hope this will all work out for you...Sending prayers and good vibes your way. How frustrating.

It all reminds me of the Monty Python skit about the twit competition.
Just imagine these (whatever-they-are) stumbling around and--you get the picture.

Thanks everyone.

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.

Keep clawing and fighting and working for the good of YOU!

You're smart to wrap it up by Friday, so that you relax, are in a positive frame of mind for the study next week.

scrapper wrote:Keep clawing and fighting and working for the good of YOU!

You're smart to wrap it up by Friday, so that you relax, are in a positive frame of mind for the study next week.

My doctor asked me to call her Friday, so I'm happy that she feels the need to confirm and double check everything. I want to go to the study in a positive frame of mind as well.

I'm very glad I didn't let all this go any longer than I did. Can you imagine had I called on Monday and been told what I was? That would have been -- ugly. Today wasn't pretty, but that would have been downright ugly.