Sharing Sleep Data with Doctor

[drgrimes]

I don't want to seem cynical but my DME told me that I am one of the few who wants to look at my own data.  He said "most people" just want it to work and if it doesn't, "they quit".  Sad.  My sleep doctor never once wanted my SD card, except for insurance/medicare compliance.  He and his technicians were most UNsympathetic when i encountered difficulties.  I know there are exceptions but my doctor was not.  Most of the time i was talking to his "technicians" who were not sympathetic.

I think many, not all, sleep  doctors would prefer that we not try to interpret our own data, and God forbid, ever change our machine settings.  They assume they know best.....and i wish they did.  As many of us know, we have to wander through a maze of confusion.  Thank God for  this forum.  It sent me in the right directions many times.  When i didn't know which way to turn, i improvised.....a lot!!! or should i say experimented.  I have wasted a lot of  $$ on every mask and even created my own prototype mask, searching for the answer.  Well five years later, i'm still at it....looking for the better way.

Oh and HDCowboy welcome aboard, from a fellow Tejano!!

[HDCowboy]

I'm glad I did take it on my own and read up on here and learn how to use my machine and change settings and stuff. My Doc had me set up with a full face mask on a BiPap machine with fixed settings of 21 on the exhale and 25 on the inhale and if I would have stayed with that setup I would have done chunked the mask & machine and all by now! The reason the settings were so high was that during my sleep test my mask leaked like a sieve the whole time and the sleep tech dude wouldn't come in when I called when I was having problems and make adjustments! I guess I could have adjusted it myself but they had me all wired up so weird and I didn't have a clue how to adjust everything anyhow. I can see why a lot of people give up on CPAP so soon though! LOL! Oh yeah and thanks for the welcome there drgrimes!

[phrogpilot73]

Is that the lamp from The Christmas Story?

Yup.  I'm pretty sure he pulled that picture from my classmate's website.  What do I mean by that?

My classmate from the Naval Academy got the NAMI Whammy (failed the medical once he reported to Pensacola), and couldn't be a pilot.  He was bummed, was a huge Christmas Story fan, so his parents built him the leg lamp from scratch to cheer him up.  When he got out of the Navy - he started a business building leg lamps.  Was so successful that when the house that was in A Christmas Story came up for sale - he bought it.  He now runs the "A Christmas Story House & Museum" and has a gift shop and an online gift shop. 

You can get leg lamps from him, shipped in a wooden crate marked FRAGILE (must be Italian). 

Back to the Sleep Doc piece - I don't know if my Doc is going to want me to bring my SD Card, a printout from Sleepyhead or not.  I'm planning on bringing it, just in case.  He prescribed me a ResMed AirSense 10 Autoset, because the ResMed rep gave him access to their clinician portal so he can review the data uploaded from my machine, while cutting out the DME middleman.  When I told them this at the DME - their response was "Oh, you have Dr. D.  He's the only one in the area that cares that much." 

I think getting a good, involved doc is hit or miss personally.  I lucked out (until he retires).

[Sleeprider]

Phrogpilot73, very nice to hear the personal connection to the Christmas Story House & Museum, and that is indeed where the Major Award came from. The house is in an east-side neighborhood of Cleveland that one should be careful about cruising, especially at night. The museum is kind of a fun idea and has been moderately successful. The Christmas Story is a favorite with my daughter, and you could almost consider it biographical for me given the era and setting. I remember being on Public Square at Christmas when the Halle's and Higbee's windows were in full display, and I'm pretty sure I nearly shot my out out with a ricochet of an oak tree.

The whole doctor thing is mostly a crap-shoot (don't put your eye out). If you get a good one, hold on.

[zzzZorro]

Ah yes, The Christmas Story.  A yearly Christmas "must watch" for me.
"Must be Italian.. Fraj-al-ee"   LMAO

[phrogpilot73]

Ah yes, The Christmas Story.  A yearly Christmas "must watch" for me.
"Must be Italian.. Fraj-al-ee"   LMAO

When I was in fourth grade - I was supposed to play 2nd Trumpet in the Christmas concert.  I was really, really excited - took apart my valves and cleaned them, lubricated them, got my trumpet ready.  The night of the concert, I cleaned and lubricated my valves once more.  Only this time, I bent a spring.  One of my valves was stuck.  Because of this, the band teacher wouldn't let me play, or even sit with the band during the concert.  I was crushed, came out and told my parents. 

Dad, realizing how crushed I was said "we're not staying."  He got the family together in the car - then went over to Eastport to have dinner in an Italian restaurant.  After dinner, we walked next door to the movie theater and watched "A Christmas Story".  Needless to say - that movie has a very special place in my heart. 

Of course, because Murphy is alive and well - I married a wonderful woman.  Who hates that movie.  I sneak it in during the holidays when she's sleeping in or goes to bed early

[drgrimes]

HD cowboy, my sleep test was a disaster.  I don't know how they could have concluded anything from it.  I couldn't fall asleep.  Laying there in the dark, strange room, knowing that "Sherry" the tech. was sitting and watching my every move on infrared cameras.  It un-nerved me.  I thought about doing something amusing just to see if she was really watching, but i resisted.

They finally had to give me a sleeping pill that maybe made me sleep for a very short time, then she came in waked me and changed mask.  Both masks made me feel like i was suffocating.  What a farce.

So they slapped a FFM on me which never worked, and very high pressure which added to the feeling of suffocating.  Thanks to this forum and the help from the guys at my DME, i finally got through it.  Now that i rethink it, it pi$$es me off all over again.