No Answers Yet For Problems With ASV

[Paper_Nanny]

Here is the incredibly brief summary of yesterday's appointment with My Sleep Doctor.

He has prescribed for me BiPAP Auto with settings of Max IPAP 15; Max EPAP 5; Max PS 4. We will see what happens with this bit of experimentation.

Wed Jul 20, 2011 2:02 am

let's say your sleep physician <-snip-> says "OK let's get rid of the methylphenidate-modafinil-duloxetine combo 'cause Muffy, a baked-goods on the Internet said to".

Well, he didn't say exactly that, but he came pretty gosh darned close! Oh, well. He isn't my team leader. He doesn't make the decisions when treatment choices cross over disciplines.

I found it interesting how much different MSD was to deal with when I was by myself as compared to when Husband has been with me during the appointment. I moved Mister Sleep Doctor a notch closer toward "untrainable" as a result.

Deborah

[NotMuffy]

Wed Jul 20, 2011 2:02 am

let's say your sleep physician <-snip-> says "OK let's get rid of the methylphenidate-modafinil-duloxetine combo 'cause Muffy, a baked-goods on the Internet said to".

Well, he didn't say exactly that, but he came pretty gosh darned close!

Perhaps you should have started with "Since the PFT indicated an increased FRC, my Plant Gain should be fairly stable. Would that be enough to offset any increase in Chemoresponsiveness (Feedback Gain) to perpetuate a CompSAS Loop? Which is why you ordered an ASV?"

In re: the Centrals, the Respironics apnea definition is (or at least was) 80% reduction, so I think they're right.

[rested gal]

I found it interesting how much different MSD was to deal with when I was by myself as compared to when Husband has been with me during the appointment. I moved Mister Sleep Doctor a notch closer toward "untrainable" as a result.

A bit dismissive, was he? MSD I mean...not your couldn't-be-there-this-time husband.

Back on page 9 - in June:
viewtopic.php?p=612195#p612195

I had an appointment with Mister Sleep Doctor (MSD) today. Long appointment... Very interesting appointment. I took Husband with me for moral support. I asked him afterwards if he noticed how MSD kept giving me non-answers to my questions and if he noticed how much MSD dislked me. Husband said he thinks MSD was being evasive because he doesn't feel comfortable saying, "I don't know the answer to that" He said, "I don't think MSD dislikes you; I think you frustrate him because you keep making him say he doesn't know the answer."

Some of my friends who have chronic illnesses and I joke about doctors being one of three types. There are the ones who are wonderful to work with, right from the very first appointment. There are the ones who are trainable. They are a little difficult at first, but can be trained so they are okay to deal with. And there are the untrainables. I would classify MSD as "trainable" at this point and today's appointment was a very long training session with him.

[NotMuffy]

your sleep physician (MSD)(not for nothin', but did you know a lot of sleep physicians read this forum?) (And Sleep Architecture is almost like a fingerprint?)(And I don't imagine he'd take too kindly to being called "MSD"?)

I did not know a lot of sleep physicians read this forum. I did not know Sleep Architecture is almost like a fingerprint. I do not have reason to believe that he would not take too kindly to being called MSD. There is no disrespect implied or intended in that abbreviation.

...(re: PFT results) Being asked questions like that will give him a feeling of authority.

Since some of your documents also included your name, maybe he's decided to cqpture a "feeling of authority" via some different means.

Assuming he reads here, of course.

[Paper_Nanny]

your sleep physician (MSD)(not for nothin', but did you know a lot of sleep physicians read this forum?) (And Sleep Architecture is almost like a fingerprint?)(And I don't imagine he'd take too kindly to being called "MSD"?)

I did not know a lot of sleep physicians read this forum. I did not know Sleep Architecture is almost like a fingerprint. I do not have reason to believe that he would not take too kindly to being called MSD. There is no disrespect implied or intended in that abbreviation.

...(re: PFT results) Being asked questions like that will give him a feeling of authority.

Since some of your documents also included your name, maybe he's decided to cqpture a "feeling of authority" via some different means.

Assuming he reads here, of course.

Couldn't he know that I am me because my Sleep Architecture is almost like a fingerprint? And couldn't he also know that I am me based solely on the content of what I have written? As for him knowing that I am me because my name is included on some of my documents, I have absolutely no concerns about that.

But let's say he does read here and he has identified me as me. If his response to reading anything I have posted is to capture a "feeling of authority" by being categorically dismissive of all the questions and concerns I brought up during my appointments yesterday, then that is cause to reclassify him as "impossible to work with."

Deborah

[Paper_Nanny]

He has prescribed for me BiPAP Auto with settings of Max IPAP 15; Max EPAP 5; Max PS 4. We will see what happens with this bit of experimentation.

Last night should have been my first night with the BiPAP Auto, but alas, I completely forgot about what my family refers to as "factory air." A misnomer, yes, because the peculiar air that blows out of new things isn't really air from the factory. But it is different from regular air and needs a name of its own, so we call it factory air.

The factory air blowing out of that BiPAP Auto last night was to me unbreathable. I got in bed, hooked myself up to the machine, and with a shriek of pain, promptly turned it off less than a minute later. I don't know what was in the air, but my eyes were watering, my nose and throate were burning, and a short while later, my face got somewhat swollen. After getting out of bed, washing my face, cleaning off the mask, changing hoses, taking some benadryl, and assuring that my epipen was right close to the bed, I tried to go back to sleep.

For once, I had trouble falling asleep. The swelling on my face made it difficult to get a good seal on my mask and I had "The Failures of The Flesh" from the Hair soundtrack blaring in my head. The beginning of the song:

We starve-look
At one another
Short of breath
Walking proudly in our winter coats
Wearing smells from laboratories

So today, I will be running that BiPAP Auto as much as possible, getting rid of the factory air and I'll give it another try tonight.

Deborah

[Paper_Nanny]

Detailed Data Reports from my first night on the new machine--

The events per hour is information that I didn't get from my other machine. Also new is Auto BiLevel Time at Pressure. I don't understand yet what is the significance of this information. But, at this point, I am barely understanding what the new machine does. How is it different than an ASV?

MSD said, "Try the Auto BiLevel" when I told him that although on many recent nights, my numbers were better than they had been and I felt better, there were still nights when I was not getting good sleep, according to both the numbers and my subjective sense of next day perkiness. I don't know the reasoning behind the suggestion to try the Auto BiLevel. How would allowing the pressure to range between two set points address whatever is going on during those aberrant nights ? And what could be the logic of setting the Pressure Support at four?

Why did I not ask these questions during the appointment with my sleep doctor? I figured the answers were classified as Things I Cannot Know. I asked one question about my PFT results and got the distinct impression that a certain doctor was wishing for the good old days, back when patients weren't allowed to read reports of test results. I asked two questions about my sleep and got three answers. AuotBiPAP; you will never feel better as long as you are taking all these medications; and a variation of "No one should ever look at anything other than compliance data from xpap therapy machines and patients have absolutely no business accessing that data!"






And here is the link to last night's waves...

http://dl.dropbox.com/u/34735018/08-20%20Waves.pdf

[Paper_Nanny]

Here are some questions I have about last night's waves...

From the section at 4:12 AM--

If those little red boxes don't show Pressure Pulses, what do they show? In other words, I am happily breathing along, then I sigh, and then... What happened next? I would have guess those little breaths at 4:14 were hypopneas or apneas, but they aren't labeled as such. What are they? And while I am breathing (or not) just then, what is the machine doing that is being tagged as a pressure pulse? I was very sad to read earlier in this thread that there is no such thing as a Pressure Pulse.

From the section at 4:54 AM--

Why did my EPAP line disappear at 4:57 AM?

And one more question, about all the CAs at the very end of the night. Seven CAs within 13 minutes of waking up. Is that probably because I was waking up, transitioning back to the world of consensual reality after spending the night in My Private World of Sleep?

Ja well, right about now, I am thinking it is about time to go back there.

Deborah

[rested gal]

I asked two questions about my sleep and got three answers.
--
you will never feel better as long as you are taking all these medications;
---

That may be the best answer MSD gave, but is he willing to (or have the time to) roll up his sleeves and work on that in a realistic way with you?

If "all these medications" are necessary to allow you to function through life with your other health problems, but are causing sleep problems or are causing sleep disordered breathing that wouldn't be present without the meds (or med interactions) isn't that what an MD with sleep as a side specialty is supposed to be looking into? Maybe he is, but will discuss it in detail only with another man...your husband.

[Paper_Nanny]

I asked two questions about my sleep and got three answers.
--
you will never feel better as long as you are taking all these medications;
---

That may be the best answer MSD gave, but is he willing to (or have the time to) roll up his sleeves and work on that in a realistic way with you?

His answer was wrong, though. I did feel better while taking all those medictions. Which is why I have been able to decrease the dose of some of them...

If "all these medications" are necessary to allow you to function through life with your other health problems, but are causing sleep problems or are causing sleep disordered breathing that wouldn't be present without the meds (or med interactions) isn't that what an MD with sleep as a side specialty is supposed to be looking into? Maybe he is, but will discuss it in detail only with another man...your husband.

Nah, that's not MSD's place to roll up his sleeves and work with me on any of the medication issues. He's not the one who prescribed any of it. That he did say. The unspoken subtext of the conversation was that he doesn't know enough about ms, fibromyalgia, or the pharmocological nuances of "all these medications" to be able to have any useful specific information.

Which is okay. I don't expect him to know those things. But it is comical- in a sad way- that he wouldn't say "I don't know enough to help you with this" except when pushed to do so in the presence of another male.

I think that was why he brought up the medications in the first place. The medication answer didn't really fit the question. My interpretation was that he was avoiding giving an answer to my original question by saying, "Look! Your medications! You will never feel better as long as you are taking all these medications! And now, let's focus on that so I can avoid your original question!"

indeed! I would be much less aggravated if he had just said, "I don't know" or "I don't have time" or "I am not going to tell you" or something, (anything!) that was a real answer.

Back to my post on Thu Jun 30, 2011 7:49 pm about my appointment with MSD

I asked [Husband] afterwards if he noticed how MSD kept giving me non-answers to my questions and if he noticed how much MSD dislked me. Husband said he thinks MSD was being evasive because he doesn't feel comfortable saying, "I don't know the answer to that" He said, "I don't think MSD dislikes you; I think you frustrate him because you keep making him say he doesn't know the answer."

It was like that, but his evasion was more slippery and dismissive in Husband's absence. He was saying, "This is my final answer" and I couldn't catch him again to say, "An answer it may be, but it has nothing to do with the question I just asked."

After reflecting on that a bit more, I do need to say that yes, I do know that aybe his evasion was more slippery and dismissive and I couldn't catch him NOT because of anything he did differently, but maybe because I did things differently. Having Husband there was good moral support. I could be more assertive with him there. That is a good thing for me to recognize so clearly. Information for future encounters with medical professionals...

All that aside-- At this point, it is my rheumatologist who seems to have the most understanding of the sleep- ms- fibromyalgia- pharmacology gestalt. And he is willing to roll up his sleeves and work with me in a realistic sort of way. And he is willing to send me to another sleep specialist to get additional information.

Thanks for the thought provoking post, RG!

Deborah

[Paper_Nanny]

How would allowing the pressure to range between two set points address whatever is going on during those aberrant nights ? And what could be the logic of setting the Pressure Support at four?

That night while lying in bed, all hooked up to my machine, heading toward sleep, I understood the whys of that. Maybe it took a little while for the information to gel in my brain. Maybe I understood because as I drifted off, the machine whispered its secrets to me. I dunno what it was, but I understand now.

Does anyone know if my ASV can be set to function like an Auto BiLevel Machine? I couldn't figure it out. RT from the DME couldn't figure it out. Respironics Rep for the area said it couldn't be done. But a post in another thread makes me wonder if it really can be done. Anyone know??

Deborah

[Paper_Nanny]

Yesterday I got copies of my chart notes and the sleep study DVD's so I will have those to take to my consult appointment next week.

Over the years, I have read chart notes from many of my medical providers. Most of the time, the notes are a decent summary of what transpired during our meeting. Sometimes I am in awe at the excellent level of detail in the notes. And other times, I feel a sense of impotant aggravation when reading the notes. The notes I got yesterday were in that latter category.

Here are a few excerpts, along wih my commentary. From my initial follow up-- "She is requesting a card reader and software to be able to monitor her compliance on a daily bases. Advised that this is unnecessary and would be anxiety provoking for her but she states this is the only way she knows how to deal with her medical problems."

I agree that having a card reader to monitor my compliance is unnecessary; obviously, I have other ways of knowing whether or not I was compliant. Anxiety provoking? Who is he to determine what will be anxiety provoking for me, after talking to me for less than ten minutes?? As for the business about that being the only way I know how to deal with my medical problems, I think that was poorly written and didn't clearly convey much meaning, but nonetheless, I will go along with that. Because, yes, the only way I know how to deal with my medical problems is to be as informed and as involved as I possibly can. He also noted during that visit that he answered my "many, many, many questions." I don't know whether that is funny or infuriating.

From my third follow up appointment-- "The patient was to be scheduled in BIPAP titration but then according to my staph [sic] states that she wanted to have a BIPAP auto SV titration. Did not think the other BIPAP would work." Well now, that is just silly, in my opinion. I'm not even sure what he is referring to, and if I did say that, what is the relevance?? Sad to say, I think he is making note of it because it is his justification for putting my on ASV instead of regular BiPAP. Later in that note, he talks about how the ASV "is causing [me] to hypoventilate and thus decrease the patient trigger [sic] breaths". The remedy for this was to recommend BiPAP set at 12/8.

He also notes that I am "very compusive and wanting to know [my] data. She is able to download her card data and review it. She has obtained manuals."

I am annoyed by him saying that he advised me my AHI would "never completely improve to zero and we accept wsome residual apnea and hypopnea." I understand that. I have no argument or disagreement with that. What I don't understand, and what I had been asking about, was AHI's that were well above the level obtained during my initial titration study. If we will accept a level of residuatl apnea and hyponpnea far above the initial level, why am I even being treated?!?

As for the DVD's-- It took awhile to figure out how to use the viewing program, but I did finally get at least the basics figured out and looked at a little bit of the information. I don't undertand enough of what I'm looking at to make any sort of comments about that.

Well, I guess I will make one comment, which is that it was very difficult not to laugh when the RT gave me the DVD's. I wondered if she had remembered my previous request for those... I certainly did!!

On Mon Jul 18, 2011 2:30 pm

I also had, "one other request. Do you still have the video taken of my room when I was sleeping during the titration study? If so, would it be possible to get a copy of that on a DVD?"

I hope that wasn't what you asked for.

What I was talking about was... a copy of the PSG study itself... all the raw data... all the squiggly lines from all the channels that you were hooked up to... a copy of the entire NPSG (nocturnal polysomnogram) ... the sleep study itself.

[BrianinTN]

I'm speechless. Literally, I don't have words. Wow.

[Paper_Nanny]

I'm speechless. Literally, I don't have words. Wow.

Eah, that's okay, Brian. I can give you some, as I am sure I have enough words for many, many, many people, in addition to myself.

I need to go to my appointment on Tuesday with no bad attitude. I am trying to let go of the hostility I feel regarding those notes. But right now, I feel myself holding on to it way to tightly. I think the letting go is being complicated by some non-sleep medical issues I am dealing with and some absurd physician responses to what is going on.

So--- Anyone reading this between now and Tuesday-- Please, visualize me standing on a hill, blowing the fuzz off of dandelions... Dandelions of medical chart notes... Fuzz of hostility... Blowing it away, letting it go... And me standing peacefully, with an open mind and clear heart, ready for my appointment.

Deborah

[Paper_Nanny]

After a few nights on the Auto BiLevel therapy, I am feeling about the same in terms of energy as I did with the regular BiPAP, but one thing I have noticed is that with the Auto BiPAP, I don't seem to be dreaming as much. Last night, just for fun, I went back to the regular BiPAP. (Okay, there was more to it than my own amusement, but I'll spare ya'll those gory details.)

I had a bit of insomina during the night, which is a rare happening for me. I woke up and just couldn't get back to any good sleep for a couple hours. I don't think that had anything to do with the BiPAP, though.

I just checked my data from last night and... Wowzers!! My AHI was 0.7!!! Now I will probably have trouble falling asleep because I am so thrilled about that!

Deborah