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Newbie.....Hello x
#1
Hello everyone, This is my first time here so please forgive me if i do things wrong.
I was given a cpap machine about 3 years ago....i had some basic home testing with a finger sats monitor...went back to the hospital and a gentleman ( not a dr) who was from a different country and i severely struggled to understand his accent gave me a cpap machine, he showed me how to use it, told me how expensive it was and sent me on my way. I did quickly ask him what was wrong with me and he said i had sleep apnea, i had to drag details out of him,,, he said i wake up 32 times an hour every hour, and stop breathing 4 times, i can't remember if he said an hour or each night? He said my oxygen levels went down to the 80s. Well that was 3 years ago and i have since moved and i still am not wearing this cpap machine, i just cannot get on with it. Ive tried the face mask, the nose pillows and the nose mask and air always leaks out and blows into my eyes.....my face sweats and i itch like i have a thousand flea's on my face. I have tried to go to my new hospital and she gave me one of their machines to use and said come back in 6 months, ive been ill since then with a pulmonary embolism, almost lost my life i was so ill....so i'm still not able to use this machine. Ive finally contacted the hospital to help me only to find the whole unit has shut down and moved miles away from me, so i still don't have any help. After 3 years i wonder if the settings have all gone, also im still only on the first setting ever put on there so maybe thats not enough when i do manage to use the machine. I'm so confused with it all. I'm sure the consultant in the hospital when i had my clot said something about it being really important to use my machine as there is a link to blood clots and sleep apnea....but im still not fully well and just can't seem to remember.

I have my own finger sats monitor at home and before i had the blood clot 5 months ago my oxygen levels were perfect....but now even just sitting here my oxygen levels are 93%.... i don't see anyone for my apnea, im not under anyone for my apnea so i have no one to ask, but even when i go to bed i can see my oxygen dropping down to 91% sometimes and i wonder if this is ok or not? At first it was when i was feeling tired and laying down, but now its happening more often and i dread to think exactly what my oxygen level is when i fall asleep. I know im still snoring badly as my husband has had to shut himself in the spare bedroom!!Sleep-well Does anyone else have these problems, i really don't know what to do to be honest xx
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#2
Honeybea, welcome, the sleep apnea maybe contributing to the PE and other illness's you may have. You need to get on the CPAP and you should have started 3 years ago. We can support you and can assist with suggestions. I think you need to go see a sleep specialist that you can trust and work with to get you started. Hope this helps a little.
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#3
Welcome Honeybea,
The fact that you have joined us shows that you know you need to be on CPAP Therapy.
You've come to the best place for help.
I don't see a location on your profile, but you should find a Sleep Specialist or Pulmomary doctor in your area. Do you have records of the overnight study that was done in that hospital? If not, you may have to get another study done.
You mentioned you have a machine from three years ago...what is the name of the machine?
I know it is hard to adapt to CPAP Therapy and having the right mask is key to being successful.
You have to start somewhere, find a Sleep Specialist or call a sleep clinic for information, then check back here.
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#4
Hi HoneyBea,
Welcome. Always nice to have more ladies on the forum. I totally understand how it is to get so plowed under with other sickness or challenges, that one lets things slip past and then other things like the unit's closing happen. Have you looked on the web for a board certified sleep doctor. I am going to guess you have seen a pulmonologist (respirologist if you live in Canada) with your PE? That doctor should know where to send you or who to refer you to. If you live remotely, that doctor may even be able to help you get a sleep study and starting place, or find you a local GP who is handy with such, even if not as helpful as a sleep specialist can be.

If money is an issue, be sure to tell the doctor you consult with this as he may be able to start you with a less expensive home study, or working from your old study and guess work.

Your machine should be fine to start with but you need some information to be able to set it up for now.
This group is great for helping, you just need to find out where to start. All of these issues you mention being difficult can be worked through.

Susan AKA The Manse Hen
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#5
Hi Honeybea,
WELCOME! to the forum.!
I'm sorry you've had such a rough start with CPAP therapy.
You need to find a new doc that will help you get a fresh start.
Much success to you and keep up posted on your progress.
trish6hundred
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#6
while you are getting connected with the right doc, suggest you slap/strap on the CPAP machine you have, and use it every night until you get help.

Please checkout the picture reference guide found HERE. Then share this with us in a post and better in the profile.

use the mask a little bit while just sitting up if you need to get comfortable getting used to it.

Don't worry if you only sleep for an hour or two at a time during this initial period.

More help is on it's way.

Oh - by the way, my snoring immediately ceased once I started. I have FFM and sweat, itch, and all that, so I can totally relate.

QAL
Dedicated to QALity sleep.
You'll note I am listed as an Advisory Member. I am honored to be listed as such. See the fine print - Advisory Members as a group provide advice and suggestions to Apnea Board administrators and staff concerning Apnea Board operation and administrative policies. Membership in the Advisory Member group should not be understood as in any way implying medical expertise or qualification for advising Sleep Apnea patients concerning their treatment.
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#7
This is a great site for advice and instruction regarding CPAP use. Keep coming back to query the experts.
Something unknown is doing we don't know what.
(Professor Sir Arthur Eddington, astrophysicist)
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