The saga continues

Yesterday I was at work and my cpap provider came out and spoke with me. (I work at a firehouse so it isn't a big deal) Well I know that most of them don't like us to figure out how to use those machines but I did happen to get into the Clinicians Menu of the Resmed s8 but I only did it witht he intentions of finding EPR settings that I was told didn't exist on that unit. I DID find the EPR settings on the unit and I tried it at all levels to see what it felt like. Unfortunately it didn't relieve the pressure enough to really help at my pressure of 18. So after showing the cpap provider that EPR existed I turned the machine back in.

I slept using the VPAP III for the first time 2 nights ago and it was just an aweful nights sleep. I fought air leaks all night and the machine was so loud compared to the s8. The next day I reported all of this to my cpap provider so that event lead up to my visit at the firehouse.

The lady that was comming out to help me with the machine took some extra steps before visiting me this time to try and get me sleeping well. She made a visit to my primary care provider who fortunately I trained in a Citizens Fire Academy the day before so I was in her good graces. The cpap lady was instructed to do whatever it took to get me straight with sleeping well. Well this all lead up to them wanting me to have a much better sleep study done. After my refusal to go to the same lab again they found me one that the CPAP company had experience with and said they have had good results from and they care about their patients. So I agreed to give it another shot. Hopefully they will discover a more resonable pressure and decided if I need this bipap or an auto.

Ok well back to the actual visit by the cpap lady. She showed up and had my actual humidifier for the VPAP III which is nice since they had just rigged one up for me previously. The new sleep lab that she spoke to instructed her to put me at a pressure of 16 with it (I think it is EPAP) to 12 until I get into the lab so I am at least more comfortable. She also decided to try me on a new mask. This was a Fisher and Pakel Flexfit431 FF. It is certainly more comfortable than my Mirage however it leaked horrible all night last night. After further inspection of my Mirage the cpap lady noticed that one of the ports on the front of the mask was missing, this port was never plugged since I had the mask I know for a fact so once again someone else goofed. (I am glad none of these people did surgery on me because they would have cut off the wrong foot!!!) The F&P mask they gave me was a large and the UM mask was a medium which I also found odd (this is what happens when you deal with too many people from the same company because this cpap lady is different from my original one). At this point I don't know what to do about the mask situation.

So that is where I am at. I know that many of you won't like me saying this but should this next sleep study go wrong and I can't get sleep with this machine I am done with all of this. I have been at it for only a month now and have already been on 3 machines and 2 masks.

Well Froger, when I was your age (a month on cpap) I had been through
1. Apap for titration
2. Same machine at straight pressure
3. Another machine on another - straight pressure
4. Machine number 2 on auto.

I has also tried about 6 or 8 combinations of masks and sizes, including the small, medium and large sizes of Breeze pillows.

By the time the month was over I had the second APAP, on a range which I have changes since then, A Breeze with medium pillows - and therapy was starting to work.

Don't let the need for trial and error upset you. Would you give up fire fighting because your equipment wan't right for the job? Or would you fight to find the right kind of equipment? Would you expect a person to be a good firefighter without any training?

xPAP therapy is similar. It takes training and good equipment. Hang in there.

O.

Sometimes the road to feeling better is fraught with many changes. I was first on a CPAP machine and now I have an APAP. It should have been within a two month period, but my DME dropped the ball and I had to wait much longer. I've also been through 5 masks before finding one that worked for me.

In the beginning I tried the Ultra Mirage and F&P ff mask thinking I was a mouth breather. Anyway, then I went to the Swift and Breeze nasal pillows. I ended up with the Activa nasal mask for a month and then purchased the Aura nasal pillows online. After all those masks, the only one that I really liked was the Aura. Besides that and the Breeze (it was defective so can't give an accurate assessment of it), all the others leaked too much. I was on a pressure of 16 and didn't have any problems with the Aura. If you can breath through your nose, you may want to try a nasal mask or pillows and use either a chinstrap or tapping your mouth. Just a thought.

Melinda

Good advice from ozij and Melinda.

froger25 wrote:After further inspection of my Mirage the cpap lady noticed that one of the ports on the front of the mask was missing, this port was never plugged since I had the mask I know for a fact so once again someone else goofed.

froger, IF that was the mask you were using during the at-home titration trial, then I really think that home titration probably was not valid in coming up with a suitable pressure for you.

Between their giving you an antiquated autopap (the Virtuoso) for the trial AND a mask with a massive leak out of an open O2 port - the whole month long exercise very likely was meaningless.

Given the mistakes (imho) the DME made in setting up your home titration trial, I'd be pushing like h*** to be given a MODERN autopap for some decent trialing between now and the upcoming new sleep study. I'd insist on using one of these machines at home until the study date:

Respironics REMstar Auto with C-flex
or
ResMed S8 Autoset Vantage

Either machine to be set at 7 - 16 cm H2O

C-flex enabled and set at 2 with the REMstar.
"EPR" will not be available in the Vantage while in auto mode.


I'd also insist that they download and print out for you (from either of those machines) the DETAILED overnight data every 5 days during the trial. Not just a summary page. And not just a report at the end of the trial period.

Given the way they've mishandled (imho) your month long home titration trial, I think they owe it to you to go along with what YOU want to try between now and the sleep study.

Don't let the need for trial and error upset you. Would you give up fire fighting because your equipment wan't right for the job? Or would you fight to find the right kind of equipment? Would you expect a person to be a good firefighter without any training?

As a firefighter we do use trial and error but off of the field of battle. We do not use our patients or victims as practice. We are expected to know our jobs and equipment so well that we know which tools are best for the job. I would expect that if I responded to your house and you were having a heart problem you would want me to attempt to use a machine such as the defibulator rather than bringing in a firehose or pike pole. My point has been that I know my job, none of these clowns have seemed to do anything but mess things up. I am skeptical of a profession that allows so many errors on a medical level.

froger, IF that was the mask you were using during the at-home titration trial, then I really think that home titration probably was not valid in coming up with a suitable pressure for you.

That is definately the mask I used during the tritration trial because I did not get a new one until yesterday. I will inquire about a new trial between now and the sleep study as you suggested.

Since you are so savy in this area I have another question about a statement made to me. I was told by the cpap lady that it isn't out of the question for me to have an Auto. Well this was prior to her contacting the new sleep lab and getting suggestions from them . I was told that she was informed by that sleep lab that they do not suggest giving me an auto because "they don't like them to be given out because they dont' get to monitor patients progress". I don't really understand how it is any different than having the CPAP or BPAP. The reason I had asked if it is possible for me to have one is because my wife said that I snored really bad on the VPAP III which I assumed was due to severe leaks in the mask from the pressure but she said it lasted 25 mintues. Now when I was on the Virtuoso she stated I did snore a little but it was only for a couple of minutes which I assumed was because it adjusted after those couple of minutes.

Now another question i have is when I go to this sleep lab should I ask to be tested on a nasal mask again as well just in case?


Thank you to everyone for helping me, this has been really difficult on me and my family so far.

I agree with everything you said, but you misunderstood me. I do not, for one second, think that what you went through with incompetent, so-called professionals is acceptable. Far from it.

I referred to that fact that we, as people learning to sleep with this equipment have to use trial and error to find right mask, and it takes time to learn this new way of sleeping.

I hope then next lab is better, and the you'll be on your way to real therapy.


Good luck.

O.

froger25 wrote:I was told that she was informed by that sleep lab that they do not suggest giving me an auto because "they don't like them to be given out because they dont' get to monitor patients progress". I don't really understand how it is any different than having the CPAP or BPAP.

You're absolutely correct, froger. As far as "monitoring patients progress" that could and should be done (but rarely is...hey, that takes time, ya know, and time is money, yadda yadda ... ) with any machine that has the ability to give detailed results. Even some straight CPAP machines can give AHI info. The sleep lab's answer doesn't even make sense, if the DME lady heard them right.

If she did get what they said accurately, that's too bad the sleep lab stuck a cog in the wheel. Sounds like you were about to get a better autopap trial than on the previous go-round. And then they had to go and scare the DME lady for no good reason. Oh well.

Tweak the heck out of that VPAP III -- play with it. It can be interesting to try different settings. Try some lower IPAP/EPAP pressures. At least this is a good opportunity for you to learn how to navigate the menus and try things with a good bi-level machine. 'Cause I'm going to bet the sleep lab will recommend you be prescribed either a bi-level machine or straight cpap. Sounds like they just mighhhhttt be a tad anti-autopap over at that lab. heh.