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What would you change?
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CHanlon Offline

Advisory Members

Posts: 292
Joined: Mar 2012

Machine: ResMed S9 Autoset
Mask Type: Nasal mask
Mask Make & Model: ResMed Activa LT
Humidifier: ResMed Hi5
CPAP Pressure: 12 -20
CPAP Software: ResScan SleepyHead

Other Comments: Mirage Activa LT nasal mask

Sex: Male
Location: Ontario, Canada

Post: #11
RE: What would you change?
I would have gone to a different doctor/clinic. And that relates to the speed of the whole process, as well. See, when I finally broke down and decided to do something about my SA was right after my step-father had gone through the whole process. In his case, his GP referred him to a sleep clinic in town, he waited a week for that appt, did his sleep study - it turned into a split study where they did his titration as well, and 3 days later he was at the DME picking up a machine. He had a problem adjusting to CPAP and they switched him to an autoset just by picking up the phone and calling his clinic. No mess, no fuss, in under 3 weeks he was up and running.

In my case, I went to my GP for a referral in April. Told him about the clinic my step-father used. Mentioned that I hate hospitals and would rather avoid trying to sleep in one. His office called me with an appointment a week later - at the office of the hospital's head of repiratory medicine... In August. Who set me up with an appointment for a sleep lab. At the hospital. In November. Now - I got lucky and they had a cancellation and got me in by the end of August... but my titration was now scheduled for Nov. Also "lucky" - the lab tech thought I was bad enough that he suggested that the dr get me a loaner autoset ASAP... I got it a couple days later. So, after about 6 weeks on APAP, the dr wanted me on fixed pressure CPAP... because he doesn't believe in prescribing APAP machines. I argued it for weeks... felt like crap on it, had a hard time with the pressure (18 cm h20) so they backed it down to 16 - felt as bad, still couldn't get used to it, woke up flinging the mask across the room - so they tried a different machine... that was a bit better, but no where near as good as the APAP. Finally...titration study - slept like crap, probably less then 2 hours all night. Dr. tells me "no case for an APAP machine, you need pressure of 14 cm." Um... what? I have months of data contradicting that. I ended up telling him a) I won't be getting a machine from the DME you sent me to, there are 2 other in town who both tell me that getting me an APAP should be no problem... and b) if you can't be bothered to justify it to the healtcare, don't. Write me the prescription and I'll buy it myself... which I did.

And, best of all, my step-sister went into the whole "do I have SA" thing in October - well before I even saw the lab for my titration - got referred to the same clinic my step-dad went to... got both studies done and a machine in her hands well before the end of the month. And when they prescribed CPAP at 10, she said "both my dad and my step-brother are on machines and they said they find APAP machines much better." Her Dr said "okay" and changed the prescription. That easily.

Am I totally convinced I went to the wrong Dr? You betcha.
04-30-2012 10:55 AM
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Better Rest Offline

Members

Posts: 7
Joined: Apr 2012

Machine: Philips System One
Mask Type: Nasal pillows
Mask Make & Model:
Humidifier: Philips
CPAP Pressure: unsure
CPAP Software: Not using software

Other Comments:

Sex: Male
Location:

Post: #12
RE: What would you change?
I would like to see a different approach to mask introduction. When I was first diagnosed, I was basically given 3 options: full face, nasal, and nasal pillows. I chose the nasal pillows, & they set me up with the house model that I had to play with for months before I got it to be workable and comfortable. Even then, it was just so-so. At that time, I didn't know just how many masks were out there and how to choose the right one. Finally I'm at the point where I've hit on something that works pretty well for me, but I still wouldn't mind some kind of arrangement that would let me experiment with the many kind of masks out there, to see if there might be something even better for me.
04-30-2012 11:46 AM
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Jenny Offline

Preferred Members-2

Posts: 70
Joined: Mar 2012

Machine: none
Mask Type: Oral
Mask Make & Model:
Humidifier: none
CPAP Pressure: none
CPAP Software: Not using software

Other Comments: Somnodent dental appliance

Sex: Female
Location: Virginia

Post: #13
RE: What would you change?
This is such a great question, but I'd like to reframe it a little and answer the question: What my doctors and dentist should have done years ago if they really cared about my health (yes, I am mad). I just got back from my 6-month dental cleaning and gave the dentist the "what for" for telling me at least 15 years ago and every year since that I grinded my teeth and that "if my teeth looked any more cracked, maybe they would think about getting me some kind of dental retainer." I told him never once was I told that bruxism (grinding teeth) might be a symptom of apnea. He had nothing to say this except to say that "this fact is relatively new." I told him I thought my horrible tiredness was "just me," as I didn't know how better to describe it. The hygienist who also heard the "what for" said that sometimes she mentions it, but that was the best response I got. I made both of them listen for about 20 minutes to my rant of the hell I've lived for 20+ years. I had also brought along the dental appliance I use that I got from another dentist, which juts my lower jaw out to help eliminate the apnea. (I wanted him to see it to get his opinion.)

I've mentioned this before, but at least within the past 7 years I have requested multiple blood tests from 2 different doctors (actually one was a PA) to see if I had anemia or thyroid disease because of my constant exhaustion. All I I got was them telling me that the blood tests were "perfect" (their words, and oh, they were so happy for me) and that I was probably depressed (and I actually bought that one time only to suffer even further tiredness from the side effects of one.) I was NEVER asked anything about sleep issues. When you're just a regular person and you don't know of anyone that has sleep apnea and never really think about it, you don't know what you don't know! I bet my experience is all too common. It's hard for me to get past these facts.
05-02-2012 08:45 PM
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