Had UPPP, Do I Have To Get A New Doc, To Get Help With This?

Janie,

Way to go in working with the DME and helping him to make things better...and I appreciate that he was interested in listening to you and acting on what he learned.

I think your doctor sounds like a really good one. He knows your history very well and listened to you and seems willing to make changes and get the DME to make changes that he thinks will help you. If your machine is set up the way you need it to be set up (and this doctor seems to understand that there are a lot of issues involved in your situation) and with the added plus of a humidifier that sounds like it is very good, then you may be just fine without the data capability. Actually we would all do fine without it if we had the right settings (whatever they may be).

I would be hesitant to dismiss the help this doctor can give you. He doesn't sound like the type that plans to just force a machine on you and turn you loose for a year or two or forever to just do or die on your own. If he is going to take an active part in monitoring how you are doing and discussing your therapy with you and keeping you a partner in this...he may be the way to go.

I'll be interested in reading more of what others say. Just curious, any chance that you could afford to keep the machine you have too? If you could keep it as a backup, you could use it occasionally to get readings once a month or something...I know one night's data can not be a realistic picture of a longer period of time since we all have quirky nights but it would give you a peek at things.

Getting your sinus infection really and truly cleared up and gone for good is a big priority right now, I think. That is bound to be affecting how you feel both awake and asleep. Did the doctor prescribe something for the infection? I'm not sure I would feel comfortable without humidification although I will have to do it when I start traveling again in the future...hopefully I'll do okay for those short times using the humidifier in passover mode.

mar

Jan,

I like the Elite II you have, so I would want to keep it, if it was me.

I would probably try the H4i turned all the way up and get a heated hose to make sure the humidity made it all the way to my nose instead of condensing inside the hose.

If that didn't work, then I'd certainly look into the F&P humidifier. Or I'd go ahead and get the F&P humidifier now. But I'd get a heated hose either way, if I planned on turning the humidity up especially high.

I see no reason to choose between data and humidity. Life needs both.

And I agree with the Southwestern salad, too!

jeff

I think the doctor wants to be absolutely sure you get the most humidity possible, Jan, and he apparently thinks the only machine that has the smarts to do that on its own, without trial and error by you - is the F&P. Your nasal problem is bad - has been going on for a long time, and the first step in treating your sleep apnea is healing your nose now. I don't think the doc it making any assumptions on the right machine for your apnea, at this point - it's your bad nose he's trying to deal with - and probably hoping to have it healed before your titration.

Which is why I would buy and use the F&P machine at this point. The doctor sounds like a good one, and I would want to let him do things his own way at this point. I would not exchange the Elite for the F&P, but I would not use the Elite either at this point.

I and also think that theoretically, he may be using those F&P machines in the lab, and by the time you come to titration, you (and he) will have found out the optimal humidity for you to have during titration in the lab. I have no idea how probable this thought is - but it's a valid theoretical possibility.

If I absolutely wanted to discuss the issue with the doctor at this point in time, I would do it from the humidity aspect. I wouldn't be too surprised to find out that the doc doesn't know our low tech solutions to rainout, and I would ask him about using hose covers, and a heated hose - since that would clearly give me more humidity than a plain uncovered hose on a Resmed machine. But finding the perfect adjustment on that does take more trial and error. Forget the data for now. I think data is important - but so is letting your doctor try the tools he knows to lead you to health. If you keep your Elite, you can always return to it in the future should it turn out the you need a fixed pressure machine long term.

I'll repeat: I think your doctor is trying to heal your nose for the titration, not treat your sleep apnea perfectly with an F&P machine -- and he has to be given the chance to treat you the way he thinks is right.

O.

A difficult call. But I definitely wouldn't want to risk alienating a perfectly good doctor---especially at this early and crucial stage.

And I would also point out that Jan's daughter's on-hand advice agrees with ozij's take...

SWS, & Ozji

I looked at F&P on Cpap. I could buy it myself and keep my ResMed. There are several machines, he sent the Prescription to my DME, The R.T. said he ordered the best. He did not give me the machine #. He will look it up tomorrow. He said it is a Cpap, not auto or bi,
but has best humidifier.

F&P have a CPAP #244 with softwear available. I E-mailed them, not available. I want to get the best machine, if I buy it I want the best price

I said in a previous e-mail today, that I also e-mailed them asking if F&P humidiffier could (for sure) be attached to my ResMed as SWS said. Would that be the best of both worlds? With the guidiance I receive here, I think there is a good machine resolution comin' up.

SWS, let's meet tomorrow at 12:20, we can grab a salad at McDonalds, it's going to be a nice day, we could eat in the park. Maybe a little libation afterward. Ozi, do you feel like lunch in the park yet? If it isn't a good time, maybe later. Seriously, appreciate you all, more than I can put into words. Jan

I'm sure he's thinking of the machine with the "ambient tracking" - the F&P standalone humidifier does not have that.
O.

ozij wrote:I'm sure he's thinking of the machine with the "ambient tracking" - the F&P standalone humidifier does not have that.

"Thermosmart" (the 600 Series) would be considered "Top O' The Line" (at least by F&P) rather than the "Ambient Tracking" of the 200 Series.

SaltLakeJan wrote:SWS, You asked what medications I was taking during the 2000 sleep tests. If I have a major doctor's appointment, I input a copy of my symptoms & medications in my computer.
My sleep tests were in May 2000,I have a list of the prescriptions I took for FMS/CF 3-2000 to 9-2000
Clonazapam 0.5 mg For Insomnia
Neurontin 300 mg Ambien 5 mg
Prilosec 20 mg Trazadone 100 mg
Effexor 75 mg

How did they affect the sleep study?

The Effexor undoubtedly caused the severe delay in REM onset.

Bob himself wrote:A REM latency of 306 minutes or 419 minutes with no REM would be very unusual. My first guess would be that the sleep scoring was inaccurate, for whatever reasons.

Bob

I think you should have gone to your second guess.

I would really want to take a close look at the Clonazapam/Ambien combination on the diagnostic study to see if that had an effect on the severity of the OSA. On the titration, it would seem that in theory a Clonazapam/Neurontin/Ambien/Trazadone cocktail should have decreased the tendency for the increased chemoresponsiveness of the centrals. One might muse, then, that the centrals were hypercapneic vs hypocapneic in nature (instead of overresponding to events, then compensating with a central, your respirations were suppressed).

This theory could also explain the improvement in the NPSG. If the obstructive component was located in the lower airway, UP3 wouldn't have made a difference in disease severity.

-SWS wrote:The best argument I can think of for not having a data-capable machine available, would be if anxiety associated with tracking that nightly data was observed or predicted by the doctor as potentially being psychologically counterproductive.

Regardless of the health problem(s) at hand, my understanding is that some patients may obsess and become anxiety ridden to the point of hindering health or recovery. That's a valid consideration for any sleep doctor IMHO. But blindly running with unacceptably high AHI can be very counterproductive as well---a far more common scenario I would guess based on countless anecdotes here.

Jan also c/o insomnia, PLMs and RLS. It is not clear to me if that AHI is heavily tainted with wake, wake/stage 1 transition problems and/or a breathing pattern generated by PLMs.

SaltLakeJan wrote:SWS, was it you who asked if the sleep studies were done at Brighton. Nope, all have been at Salt Lake's East Bench elevation of about 4400 above sea level. DH is a former private pilot & is familiar with our elevation.

East Bench? Muffy knows the East bench! Well, maybe not "East Bench", the neighborhood, more like "East bench", the bench, down by Olympus on the W. Blvd. Beautiful running area at sunrise.

Except for the gravel pit.

I wish they'd put that part of the mountain back.

Anyway, a sudden relocation to elevation could generate central apnea (periodic breathing associated with altitude) but 4400 feet shouldn't do anything. And now that I think about it, the only thing on top of Brighton is the Ski Shoppe.

And "bunnies".

Muffy

ozij wrote:the first step in treating your sleep apnea is healing your nose now.

ozij wrote:it's your bad nose he's trying to deal with - and probably hoping to have it healed before your titration.

ozij wrote:I would buy and use the F&P machine at this point.

ozij wrote:The doctor sounds like a good one, and I would want to let him do things his own way at this point.

ozij wrote:letting your doctor try the tools he knows to lead you to health.

ozij wrote:he has to be given the chance to treat you the way he thinks is right.

VERY insightful, wise words. Well said.

Muffy wrote:ozij wrote:
I'm sure he's thinking of the machine with the "ambient tracking" - the F&P standalone humidifier does not have that.
"Thermosmart" (the 600 Series) would be considered "Top O' The Line" (at least by F&P) rather than the "Ambient Tracking" of the 200 Series.

Whooop... my bad. I should have checked better before blabbering.

O.

Hi Muffy,
You are up bright and early - getting ready for a morning run? If you are planning to run past Olympus H.S. this morning, the sun is just going to rise over the mountains. It is going to be clear & sunny, not too hot. The school is a mile or so from where we live. It would be a perfect day for a hike in the Cottonwoods.

It is very kind of you to drop by my post, before your run. SWS needs a buddy to help decipher if the technician/s/ fell asleep during my 2000 titration. Or, if I was so affected by the combination of my prescriptions, the results were squelched .

Muffy wrote:-SWS wrote:
The best argument I can think of for not having a data-capable machine available, would be if anxiety associated with tracking that nightly data was observed or predicted by the doctor as potentially being psychologically counterproductive.

I asked my daughter about the Dr & his possible thoughts about data-capable machines & my reaction. She agreed with me that topic wasn't discussed. He was very busy telling me about the superior qualities of the humidifier, how it would help heal my nares, and I would sleep better, and it was a quiet unit. When Dana & I recalled that part of our visit, we both thought he presented the advantages for me to use F&P in a very nice manner, but it actually was a "hard sell." (I'll call the DME & get the model of humidifier & cpap later this a.m.) He wants me to use my F&P unit for my titration on June 7th. He predicted my apneas would be reduced since the UPPP. but he would not recommend using UPPP as a way to get them down. He added currently, he wouldn't recommend UPPP for anyone. (I included his opinion on UPPP for anyone considering the surgery, or who is reviewing the information you all have posted) regarding it.)

DreamDiver had suggested having a Patient Advocate at my appointment for several reasons. One was to take notes. I gave her a notebook & several pens, but she took very few notes. I asked her why. She said that he was so informative, she was caught up by his statements, and she forgot. Should I fire her?

Muffy, are you referring to my UPPP surgery before the 2000 sleep study & titration, it was after?

Muffy wrote:This theory could also explain the improvement in the NPSG. If the obstructive component was located in the lower airway, UP3 wouldn't have made a difference in disease severity.

I'll be back a little later. My appreciation for you all is boundless.

The doctor wants to have my ferritin levels checked - are CPAP patients frequently anemic?

Jan

Mornin' jnk

I'm glad you hung with me, it takes several readings, of SWS's posts, for me to get the "ah haw" moment. Sometimes, I think I will have to ask you to translate. His intellect is in the stratosphere. i'm glad he is deciphering my complex subjects. I had no idea my body was hiding them. I thought I was (to use Pres. Obama's word) transparent.

I agree with your analgy of Ozji's posts. She has the ability to make things simple/direct/clear. It certainly helps to have different points of view - & watch them being resolved.

I'm still resolving my thoughts about my new doctor. At first glance, he has a proffessorial air about him and presents a genial disposition. But, I have decided, he actually is a firm man with definite objectives. He just has the ability to put his thoughts into a "nice package" for delivery. I'd like to know what his thoughts are 'bout my future.

Jan

SaltLakeJan wrote:SWS needs a buddy to help decipher if the technician/s/ fell asleep during my 2000 titration.

Whew! The results are in, and it appears your technician was diligently using the industry-standard scoring grid after all. What a relief! I think your upcoming PSG will probably add far more pertinence to the big picture. At least those are my hopes.

But a recap of my own take of the humidifier issue:
1) The external F&P HC150 humidifier can interface with any straight-pressure CPAP machine on the market.
2) The S8 Elite II CPAP machine is very compatible with that HC150 external humidifier.
3) The HC150 external humidifier has ambient tracking (the far more important feature IMHO), but not a heated-tube feature called Thermosmart.
4) The Aussie heated hose can nicely substitute for that Thermosmart feature IMHO (found here).


But again, I'd take extra care not to alienate such a well-meaning and sharp sleep doctor. I think a competent sleep doctor for a likely CompSAS/CSDB candidate with yet other health issues is far more important than data read-outs. But those data read-outs are especially important for any patient with great potential for night-to-night variability IMHO as well. A complex issue.

Southwestern salad in the park it is! Remember the Alamo dressing.

Here I am again SWs,

I'd be in deep trouble if you had not come to my post. I am in your debt for sorting things out. I'm interested that the 2000 technician was awake & on the job that morning - seems so long ago.

This morning I'm remembering more about my dr appointment. I wish my daughter hadn't been so interested in what the doctor was telling us. When he referred to my pending titration, he told me to bring my new equipment. He said he might drop by the titration at some time - If I show up with my ResMed - what do you think that is going to do to our budding doctor/patient relationship?

Yikes - I'll need that lunch.
Jan

SaltLakeJan wrote:The doctor wants to have my ferritin levels checked - are CPAP patients frequently anemic?

Jan

Jan, you say you have been diagnosed with Chronic Fatigue Syndrome (CFS). People with those issues are often either anemic (low ferritin) or may have hemochromatosis (high ferritin). Either one can make you extremely tired. Low ferritin will make you tired due to low oxygen carrying capacity. It is also associated with Restless Leg Syndrome. High ferritin makes you tired because it damages organs. Either way, it is a good idea to check.