Nervous about follow-up appt Thurs AM

[Bluebonnet_Gal]

My first appointment with my ENT after my sleep study, he gave me a script for an auto PAP on a trial basis. He said he wanted to make sure we get the right pressure (didn't trust the 3 1/2 hours I was on PAP in my split study. I think that's a good sign he's conscientious. However, the script was completely generic - only stated Auto PAP - trial - 2 weeks. Then he told me he wanted to see me again in 4 weeks, then changed his mind and said 6 weeks.

He faxed the script along with my sleep study report to my DME. My DME was puzzled that he wanted to see me in 6 weeks, but the script said 2 weeks, but he said it wasn't a problem, he could rent me the trial machine for 6 weeks. He was also puzzled that the ENT didn't give a pressure range on the scrip. My sleep study titration was 14. The DME set the machine at 6 - 20 range.

Thanks to finding this forum, I discovered that a min of 6 when I likely need a pressure more around 14 is too low. It will take too long for the machine to get to the pressure needed to prevent an apnea. Also thanks to this forum, I found out how to adjust the machine, I was able to purchase software and card reader, used, at a very reasonable price and I have been watching my results daily. I have slowly increased my min pressure from 6 to 13. At 13, I'm having some leak problems, but my AHI is in the generally acceptable range. I think I'm doing relatively well, but I'd like to do better if it's possible.

It's been just about 4 weeks since I started xPAP. I'm at a bit of a loss as to the best way to continue and I think I have enough data for my ENT to make recommendation (if he's conscientious enough to do so). I'm hopeful because he wanted auto PAP rather than straight C-PAP (if only on a trial basis). Thanks to the wonderful people on this forum, I have detailed reports to show him. The DME only instructed me to insert the smart card once before going for my follow-up, not daily before noon. The Resmed machine I'm using only records daily data if the card is inserted daily before noon (before the machine clears the data for the next day). Had I not found this forum, I would have only had summary data for the weeks I've been using the machine. I'm not sure what the ENT is expecting, but I think it's quite presumptive of my DME to think summary data will suffice.

So here I am, ready to see the ENT at 4 weeks into this journey. I have a card reader and software, so I can print my own reports (don't need the DME for that). Since I have the Resmed card reader and software and I'm now used to reading the data, I plan to ask for a script for an S8 Autoset II as my permanent machine. I'm hopeful he will be cooperative. I'm wondering though at this point - with a min pressure of 13 - would I benefit from a Bi-PAP? I'm also hopeful that my ENT will be supportive of my active involvement in my therapy and will show some real interest in my reports and getting the most out of them. When I was last in his office, I noticed a mannequin head with a nasal mask. That seems to indicate he is active in treating OSA with xPAP. He also told me that he is on xPAP himself, so he has personal experience!

Here are my concerns. I'm concerned that he might respond negatively to me taking charge of my therapy (as some members of this forum have experienced). However, if that is the case, I plan to see my allergist/pulmonologist (who said he could order the sleep study for me) about future treatment of OSA. I have been seeing him many years and have gotten to know him well. He is a problem solver. He explains things to his patients and appreciates them being actively involved in treatment. I sort of wish I had gone through him initially for the sleep study, but my Family Practitioner and the claims handler for my insurance (I work in the insurance agency that provides my medical insurance) both advised me to see an ENT. My allergist/pulmonologist is in the same medical group as my ENT (directly downstairs) and has access via computer to all medical records of any Dr. I see in the group, so the switch would be very easy. My allergist/pulmonologist was the first Dr to tell me I had a heart murmur. He recommended I see a cardiologist to make sure it was nothing serious. After seeing the cardiologist and having a sono of my heart, the cardiologist basically said my condition was nothing to worry about, but didn't explain anything. When I next saw my allergist/pulmonologist, he asked if I had the murmur checked out. When I told him I did - at the cardiologist in the same medical group (who shares a waiting area with my allergist/pulmonologist), he pulled up my results on the computer and explained the report to me FAR better than the cardiologist did! For this reason, I think he might be better to see about my OSA. BUT, I'm going to give my ENT a chance at this point and see how it goes. I know I can easily switch docs at any time and I don't even have to get my medical records transferred!

The other thing I'm nervous about is facing my DME - first with a permanent script for an Auto PAP (he was negative about the Auto PAP on even a trial basis - said the insurance companies don't like to pay for them). Then nervous he will wonder why I didn't get reports from him before seeing my Dr. again (I plan to tell him that my ENT has card readers and software in his office and just told me to bring in my smart card). Also, when the DME gets the rental back, will he see that I messed with the settings and jump on me for that? I can be a pushover at times and I Know in this case I need to be assertive and make sure I get my needs met. Oh - to add to the mix, my DME is a client of the insurance agency I work for and he's aware of where i work. I don't want to put any strain on my agency's relationship with the DME as a client because of my personal business with the DME. I just really don't like awkward situations and I can see that this could get awkward. The person at the DME that handles xPAP and mask fitting is the owner of the business. Fortunately, I don't handle his account in my office - another team member handles it.

Thanks for reading my ramblings and my worries. Any supportive comments or advice is much appreciated!

[Bluebonnet_Gal]

Bump.

Any comments/encouragement appreciated!

[Gerald]

Bluebonnet........

Are you from the Waco area?

I saw a reference to "central Texas" a few posts back............

[Bluebonnet_Gal]

I'm actually closer to Austin - between Austin and Houston. I see a lot of Texans on here, but few give the actual city they're in. Since I'm in a very small town, I'm cautious about publicizing it.

[UsedSlinky]

[qupte] ... I have slowly increased my min pressure from 6 to 13. At 13, I'm having some leak problems, but my AHI is in the generally acceptable range. ...[/quote]
My first inclination would be to back down the lower pressure setting to 12 and get a full week's data at that 12-20 setting. In fact, I might even be inclined to lower the top setting to maybe 16- or 17. But its the lower setting I'm be most inclined to change.

... The Resmed machine I'm using only records daily data if the card is inserted daily before noon (before the machine clears the data for the next day). ...

Nah, that's not quite right. As far as access to that data via the LCD screen, you're right, you have to access it before noon. But at noon, that data is rolled over into the total averages. With the software the individual night's data for 4-5 nights is available before the first of the five nights' data is rolled into the averages and the most recent night's data becomes the last of the 5 nights of individual data.

... I'm not sure what the ENT is expecting, but I think it's quite presumptive of my DME to think summary data will suffice. ...

Most likely this DME is experiencced with and used to the sleep doctors and what data they are interested in and actually pay any attention to. *sigh* I "think" I am in love w/your allergist/pulmonologist!!! He does sound like a real KEEPER! You are fortunate to have him, but then you've already made it clear you are very much aware of that.

You're right, its kind of a sticky situation - but - it is YOUR health and YOUR therapy. I would NOT lie to the DME about why you haven't had any data downloads done!!!!! Since they are all so intertwined your DME "knows" whether your ENT does have the reader and software. It NEVER pays to get cuaght in a lie w/the medical profession. From then on in you will NEVER have any credibility w/them and the word travels. IF the occasion arises THEN and only then do you 'fess up to changing the pressure settings and it was just a matter of 6 cms was too low, too uncomfortable. The KEY is do NOT VOLUNTEER ANY info. Comment ONLY when and if the DME asks a direct question. IF you sense some .... strain .... w/the ENT about any of this, go slow in VOLUNTEERING any information except what is most pertinent. As things smooth over you can expand the relationship more until you are able to decide if he's worth staying w/or not. Just play it by ear. Don't overwhelm him w/your new-found knowledge! You don't want him to feel challenged 'cause their ego will always respond to the perceived challenge.

Good luck! It sure would be nice to have TWO good, progressive, responsive, attentive doctors on your team!!!!

[Bluebonnet_Gal]

The KEY is do NOT VOLUNTEER ANY info. Comment ONLY when and if the DME asks a direct question. IF you sense some .... strain .... w/the ENT about any of this, go slow in VOLUNTEERING any information except what is most pertinent. As things smooth over you can expand the relationship more until you are able to decide if he's worth staying w/or not. Just play it by ear. Don't overwhelm him w/your new-found knowledge! You don't want him to feel challenged 'cause their ego will always respond to the perceived challenge.

Good luck! It sure would be nice to have TWO good, progressive, responsive, attentive doctors on your team!!!!

VERY GOOD advice - thanks MUCH US!

Yes, it would be wonderful to have TWO good, progressive, responsive, attentive docs on my team! Actually, I already have 2 - I have a great Fam Practitioner (who is admittedly not an expert in xPAP) and a great Allergist/Pulmonologist! Thanks for reminding me that I'm already VERY FORTUNATE!

[GuyK]

To me, it sounds like you're doing just fine with taking charge of your therapy. For example, the ENT doesn't really care what he writes the scrip for, so writing it for any particular APAP shouldn't be a problem. The DME -- so what. You can always find another one of them, right? They are interested in maximizing their profit, so they want to steer you to a machine that has a better profit margin. I would guess they won't care a bit about whether or not you changed settings. If by any chance they did bring it up, you can mention that "based on advice, blah blah blah, I raised the min pressure for better therapy" and then point to the improved results.

(as a side note, at my first and only followup, my doctor suggested lowering my min pressure, and I can't figure out why -- things aren't better, and I'm watching the data, so I'm probably going to change it back -- I'm keeping track of when I make the changes, so I can try and correlate the results)

One more thing -- at my followup, my doctor pointed to a printout I had from an online forum and said "that's a bunch of B.S." and I responded "how else am I supposed to learn?" which he didn't answer. The more I think about it, so what. It's not like he spends more than 5 minutes contemplating my condition and experiences. He barely listens to answers to questions that he asks. I'm not here for medical advice. I am here to learn (and I am quite thankful there are those willing to educate) and share my experiences. I try to learn what I can, I try to relate it to what I'm seeing, and I experiment and hopefully see improved results. I went in to my followup with a ton of questions, and in some cases supporting documentation, and I get curt answers like "that's a bunch of B.S.".

I admire anyone that decides to take charge of their own therapy, because who else is going to do it?

Guy

[JoMoma- Sleepy in WI]

I'm new to this whole forum as well but I can relate to your situation. As a critical care RN who works with Intensivists-Pulmonologists I have very definite ideas regarding what my treatment should be. Unfortunately my insurance is through my husbands medical facility and not mine. So I had my sleep study and got my results on 12/31/08 along with picking up my rent to own machine. They gave me the ResMed S8* Series II. They sent me home with the LT Swift nasal mask and the H4i Humidifier.

The doctors initial settings where for a straight pressure of 10 with no expiratory pressure relief set. I tried that for 8 hours the first night. Woke up with abdominal cramping and belching. Spent the next few hours "Off gassing" as us divers say. When I called the Therapist on New Years she told me I had to stop swallowing air in my sleep. I asked her how I would accomplish this and she assured me I would know when I was doing it. Well she was wrong.

So my husband the Clinical Engineer and myself found the right combinations of keys to change the settings. I placed in the auto mode with a low of 4 and a high of 10 and with the expiratory pressure relief set. Guess what no more problems with being filled with excess air.

I am still trying to get use to the nasal pillow and I have Chronic Sinus Infections on a good day. Right now they are very tender I'm sure from the pressure.

Not sure what I'll tell the Dr When I see him but I definitely know that I need to be in control of my health and treatment.

Now I need to get a hold of the Clinician Manual and software so I can be sure I am optimizing my therapy. If anyone knows where you can get it I would appreciate an email at

(email address deleted at poster's request.)

[Bluebonnet_Gal]

The doctors initial settings where for a straight pressure of 10 with no expiratory pressure relief set. I tried that for 8 hours the first night. Woke up with abdominal cramping and belching. Spent the next few hours "Off gassing" as us divers say. When I called the Therapist on New Years she told me I had to stop swallowing air in my sleep. I asked her how I would accomplish this and she assured me I would know when I was doing it. Well she was wrong.

The Therapist is supposed to be a professional and she told you THAT??? Glad you found this forum. You'll find much more useful information here from daily users of the equipment! Fill out the info with the equipment you're using so other forum members can be more helpful to your specific situation. We prefer you use the text version on your equipment rather than the photos - it's easier to tell exactly what equipment you're using.

Now I need to get a hold of the Clinician Manual and software so I can be sure I am optimizing my therapy.

Watch posts here and check cpapauction.com for the cardreader. You can also purchase at cpap.com. I'm told you don't need a prescription for software and cardreader, but I purchased them used, so I'm not sure.

I have to get ready for work now, but I'll also e-mail you with some helpful links as soon as I get a chance.

Gail

[Slinky]

JoMoma, you are right, the Resmed S8 II is a series of models of xPAPs. Unfortunately, you didn't tell us WHICH S8 II model. Not all of the S8 IIs are fully data capable. You mention you and your husband changing it to auto mode and a pressure range of 4 to 10 so I am going to fairly safely assume you have the Resmed S8 II AutoSet. You certainly were FORTUNATE to get such a good xPAP right from the get-go from your local DME supplier. Congratulations! You are WAY AHEAD of the game!

I assume you are aware you can change the settings on the Humidaire 4i for comfort as needed. A good saline nasal spray may well be all you need for nasal and sinus comfort. Ayr Saline Nasal Spray and Nasal Gel both work quite well for the sinuses AND for any tenderness in the nasal passages that nasal pillows can sometimes cause when we first start using them. Nasal pillows tend to provide more direct air pressure into the nasal passages than the nasal cushion or full face masks.

Verify for us for sure which Resmed S8 II you have and I am sure one of us here can e-mail you a pdf of the Clinicians Manual. Check your profile - as a gentle hint - you really don't want your e-mail address public in this forum. I suggest you delete it and also allow PMs (private messaging). You can put your e-mail addy in your profile if you want or you can just give it via PM whenever you want to share it w/someone. You can PM me if you like - and by the way, you need not only the ResScan software you will also need either the proprietary cable reader or USB cable. The latest version of ResScan is 3.7

I would suggest you just be tactfully upfront w/the doctor. Just tell him that the 10 cms straight pressure was tooo much and the resulting aerophagia effects were too uncomfortable, and certainly unnecessary, so you switched to auto mode and set your pressures 4 to 10 and how well you've done since. I'm sure you can manage convincing him you'd like his advice about that lower pressure (4 cms) and the sinus issues and his opinion of your data and what changes he might advise. You work w/these sensitive egos at work every day.

[JOMOMA]

Thanks for the warm welcome and information.
I have learned alot today and know I still have alot to learn.
I am working on looking into getting a card reader for my machine so I can make full use of its functions.
Jo Ellen

[roster]

I'm new to this whole forum as well but I can relate to your situation. As a critical care RN who works with Intensivists-Pulmonologists I have very definite ideas regarding what my treatment should be. Unfortunately my insurance is through my husbands medical facility and not mine. So I had my sleep study and got my results on 12/31/08 along with picking up my rent to own machine. They gave me the ResMed S8* Series II. They sent me home with the LT Swift nasal mask and the H4i Humidifier.

The doctors initial settings where for a straight pressure of 10 with no expiratory pressure relief set. I tried that for 8 hours the first night. Woke up with abdominal cramping and belching. Spent the next few hours "Off gassing" as us divers say. When I called the Therapist on New Years she told me I had to stop swallowing air in my sleep. I asked her how I would accomplish this and she assured me I would know when I was doing it. Well she was wrong.

So my husband the Clinical Engineer and myself found the right combinations of keys to change the settings. I placed in the auto mode with a low of 4 and a high of 10 and with the expiratory pressure relief set. Guess what no more problems with being filled with excess air.

I am still trying to get use to the nasal pillow and I have Chronic Sinus Infections on a good day. Right now they are very tender I'm sure from the pressure.

Not sure what I'll tell the Dr When I see him but I definitely know that I need to be in control of my health and treatment.

Now I need to get a hold of the Clinician Manual and software so I can be sure I am optimizing my therapy. If anyone knows where you can get it I would appreciate it

Welcome to the forum.

That you will get the software is the only way to go. Good!

As far as swallowing air, I don't believe that is correct. The air pressure is forcing itself through the two esophogeal sphincters without swallowing. There are quite a few people on the forum who have reported this problem went away after some time of using CPAP. It has not gone away for me but it has moderated a good bit.

Thanks for calling my attention to the technical term "off gassing". My wife will be hearing that term some mornings when she complains.

Good luck,