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LACK OF CPAP ORIENTATION/CPAP ADJUSTMENT/DPAP WITH HEAD COLD

I think I answered my own questions when I them!! Not that I intended to--this is my first time on the site.

I really don't want to go through the entire message again. It was long and I'm sitting here crying 'cause I'm so exhausted.

Was diagnosed severe sleep apnea about 5-6 weeks ago. Had to wait 2 weeks for my pump because the md hadn't signed off on the orders. Had to make MANY phone calls to get the pump. Have had multiple problems adjusting to it because of lack of education upfront. Gave up at one point and didn't even try for a week. Then got scared and tried again. Finally, with tech help, got the info I needed (at the time) and later (again) found out the pump was set wrong by DME. Got that resolved, which helped. Not I have a bad head cold, and the info I have re: using CPAP with a cold vs a sinus infection conflicts. Spent two days deciding it I have a sinus infection. Now know it's a head cold. Another site I was on, people ALL said to do whatever it takes to stay on CPAP with a cold. Take meds, whatever, they said. Tech would rather I not take Nyquil but that's what I have and that's what I've been taking. Am sleeping well with CPAP and Nyquil, cold continues for third day now--most recent concern is oversleeping. I wake up after about 7 hours on CPAP, take off the mask and go soundly back to sleep. Have increased the hydration to 4, which has helped a lot with cold symptoms. But I'm wondering what the oversleeping is about. A friend of mine thought maybe it was because I've been so incredibly sleep-deprived for so long , that my body's just trying to catch up. Anybody know about that?
What do you guys think,or what is your experience,with lack of initial education/support? I don't even have a f/u appt. with md till 3 weeks from now, which makes no sense to me when I'm starting what appears to be a difficult regimen of therapy, at least it has been for me to date. I'd appreciate any help. P.S. I'm a young 67 years old and a heart patient.
-Susan

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Hi Susan,
Well, unfortunately you have discovered what 99% of the rest of us have, that you will have to search out and find the answers to your own questions about your CPAP therapy. When you are trying to learn to use your machine, it is extremely frustrating and upsetting not to have someone to turn to for support and answers in the medical field. I TOTALLY sympathize with your situation. The doctor writes the script then the DME takes over and they are only interested in tossing the cheapest machine they can your way. I have to fight each and every moment over every silly little things with the DME. Now I know that I can EXPECT to do that with them each and every time. I had a 2 week argument over getting new nasal pillows and filters, no kidding.

I come to this site first and ask a whole bunch of questions then I know how to approach the doctors, and the DMEs.
As you read the posts on this site you will see that we are all more or less in the same boat, so don't worry, you don't have to swim in the ocean by yourself. We are here to support each other. BEST to YOU!
Hey Bee-girl!! Thanks so much for your support. I've already learned that there's more knowledge and caring people right here on this site than anything I've run into the past six weeks. It was all concern/concern/concern in the medical community till I was diagnosed (guess they got their $$), and now, just like you said, I have to persevere to get a phone call returned. It's a pain in the ass. (Are we allowed to talk like that on this site???)

I've told everyone I KNOW about SleepGuide. Several of my friends and family have already looked at the site and understand better what I'm talking/bitching/crying about now. Thank God Mike got this up and running, 'cause I went to a gazillion other ones, none of which can match you guys. Do you know he wrote me back personally the very first time I was on here??? Now that's impressive in this age of cyber-space. I'm old and cynical about all the technological crap that's going on in the world today, but this is one time, I must say, when I'm embracing what he does with everything I've got. I feel like it's the ONLY place I have right now that's safe....again, thank you so much. I appreciate your taking the time to hold me up--that's what it feels like at the moment. -Susan McCord :-)

BeeAsleep said:
Hi Susan,
Well, unfortunately you have discovered what 99% of the rest of us have, that you will have to search out and find the answers to your own questions about your CPAP therapy. When you are trying to learn to use your machine, it is extremely frustrating and upsetting not to have someone to turn to for support and answers in the medical field. I TOTALLY sympathize with your situation. The doctor writes the script then the DME takes over and they are only interested in tossing the cheapest machine they can your way. I have to fight each and every moment over every silly little things with the DME. Now I know that I can EXPECT to do that with them each and every time. I had a 2 week argument over getting new nasal pillows and filters, no kidding.

I come to this site first and ask a whole bunch of questions then I know how to approach the doctors, and the DMEs.
As you read the posts on this site you will see that we are all more or less in the same boat, so don't worry, you don't have to swim in the ocean by yourself. We are here to support each other. BEST to YOU!

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