Plmnb's New Therapy ResMed AirCurve 10 ST-A

[HalfAsleep]

Sorry that you're having so much trouble.

I haven't read your whole thread, because, like you, I've been coming and going over a few years. So, apologies in advance if someone has already asked this question.

Have you consulted with a pulmonologist? Some doc or other sent me to a pulmonologist for a reason I entirely forget, and I was shocked to find out I have lung damage. The Pulmo found the damage on an old CT scan that no one had picked up on. I had absolutely no idea.

I had even been having lung puff tests for years, but no one sent me to the pulmonologist.

Anyway, just a thought. I'm sure you've thought of everything, but I'm anxious to help!

[Plmnb]

HalfAsleep!  I am so sorry I have not responded to your post.  I did not realize you had written one, I don't recall getting a notification, maybe because I am "half sleep"  

Also, I am trying VERY hard not to be the obsessive poster I feel that I have been. 

The doctor that just referred me to Mayo is both a pulmonologist & a sleep specialist.  I have had the PFT tests and lung imaging done.  My PFT results were not bad and my lung imaging results show lungs that supposedly appear just fine.

I saw your post when I came on to post the following link:

Upper Airway Resistance Syndrome The upper airway resistance syndrome (UARS) is characterized by increasingly negative intrathoracic pressures during inspiration that lead to arousals and sleep fragmentation, in the absence of readily perceived apneas, hypopneas, or oxygen desaturations. From: Principles and Practice of Pediatric Sleep Medicine (Second Edition), 2014

Not the most current info perhaps but seems helpful to me.  It appears to mention other sleep issues I seem to have.

One of the things it mentions is somewhere, I haven't thoroughly read it yet, is belly fat.  Currently, I am embarrassed to say, I have this.  HOWEVER, during my journey I haven't always.  I hope my Mayo doctors don't just tell me to lose weight.  They haven't treated me when I was much lighter and having same issues.

The other thing I quickly noticed is that the article talks about “absence of noticeable O2 desaturation” yet I do have noticeable desats.  However I read somewhere, maybe another article or post here, that we are not all cookie cutter as far as symptoms.

But also, to add to my confusion is that although I do get desats into the low 80s that level isn’t the majority of my sleep. The majority of my sleep does have my O2 level at around the 92% level the article states. It’s just that there are many drops that last for anywhere from 23-52 minutes, or around those minutes.

I hope the above link might be informative for other members here.

Regards,
Plmnb

[Jay51]

Some capnography tests that I have taken have indicated that I hypoventilate.  In OHS, adipose tissue acts as a restricting agent against the full expansion of the lungs during breathing.  This is the mechanism at work in OHS.  Just some extra information to ponder.

[Plmnb]

Thank you for your reply Jay51!

I never heard of OSH until your post now.  I had to look it up.

GOOGLE RESULTS FOR OSH

I haven't reviewed all the results of the search yet, but I did have to also look up what "eucapnic" means.

I still am trying to think back to the start of everything, as far back as 2003, and I am pretty sure that for at least some of the time I was not overweight, at least not severely.  However, based on the tiny amount of information I have quickly read, I suppose this a possible condition.  I don't have asthma, but I do have a few of the other things.  Again, I guess it isn't a "cookie cutter" situation for me.

I don’t have chest weight. My current weight issues are lower body.

From so many years of dealing with apnea it seems I have somethings from column A, some things from column B, and so on.

I feel like I am on an out of control merry go round and am very anxious about my upcoming Mayo appointment.  I know it is a highly respected medical center, but I pray they will take the time to LISTEN and REVIEW ALL my questions and data.  So many doctors I have seen just want to spend five minutes and push you out the door.

Any words of wisdom from you or anyone else is greatly appreciated.  At this moment I am tearing up.  I am sooooo tired.

Sincerely,
Plmnb

[Plmnb]

Finally!!!

After my sleep doctor not following my instructions about where to send my referral, not putting down diagnosis code, re-sending referral to correct place and waiting for review, correct place sending referral to Mayo, Mayo reviewal process, I HAVE my appointment!

I am happy to report they are able to get me in sooner than I expected. April 11th. A nurse is supposed to call me the week prior to go over stuff. I also quadruple checked with appointment setter about bringing my OSCAR info and other data/documents and she assured me I can. I expressed my concern about the appointment allowing me enough time to go over my concerns and questions and she promised I would not have an issue doing so.

I pray that things will go well.