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New to CPAP and frustrated!
02-12-2016, 01:29 AM
Hello all, my hubby (52 yrs young) had sleep study done Jan 8th. I knew he had apnea since I've listen to him quit breathing for YEARS and the loud snoring. Well his follow up was Jan 25th and I'm pretty sure the Dr never looked at his file until he walked in the room. He's numbers were horrible I think o2 levels were at 66% I forget how many episodes he had but was more than 1 every min. So dr said we need to put rush on this. Whatever! Well his DreamStation came in Friday 5th Feb. the little tech that fits the patients spent all of 5 mins with him ( she only works half day on Fridays and they made his appt at 9:30 am and he got there and doors were locked for staff meeting. Finally opened up at 10:15. Why schedule an appt if you won't be open?!?) The Dr has him on 16 lbs of pressure. He has nuance pillow mask and humidifier with DreamStation. Not sure if it is pro or which model since manual has all 3 on cover. Well Friday night rolls around and it will not go above 4. He can't breathe AT ALL with it on. In or out. Said it was like someone holding his nose and saying now breathe. So needless to say it didn't get worn all weekend. Monday afternoon he calls and goes back down to dr office and sees same girl. Our 17 year old went with him and she said the nurse/tech lady spent MAYBE 5 mins pushed a few buttons and sent him on his way. We still don't know how to operate this machine. I think hubby talked her into putting it up to 6 maybe but then he thought she turned it back to 4. Keep in mind he's supposed to be at 16. I know it should gradually increase so he can get to sleep before full pressure is going but he can't breathe at 4 or even 6. So I took to google and found this site. Looked up control manual and changed it to 8. Hour later still on 8 and wouldn't increase. He wasn't asleep just laying n bed trying to fall asleep. So I set it on 10 lbs and turned off light and registered on this site so I could ask where do we go from here. The Dr office hasn't mentioned coming back to check his data in a week or even a month. It's like they do sleep study. Bill your insurance here's a machine and hope it works out for you. I will be calling back to dr tomorrow and maybe trying the supplier people that sent machine. I did call them Monday to see if they knew why dr was closed when he had an appt. and they were able to get thru and called me back to say they would be opening in few mins (45 mins after his appt time) and I called them back after he got home and ordered a chin strap because the girl kept going on about how he would never be able to do 16 lbs without a strap to keep his mouth shut at night. He tried it for all of 20 mins and its n the floor. He so needs this to work! I'm pulling my hair out ! My mom has had a CPAP machine for 8 years and loves it. His buddy told him he will feel like a new man. So far all he is feeling is more frustration. His health has gotten so bad last few years and weight gain is bad. Just getting him to even go to the dr was pulling teeth but to not have them be more helpful is not helping my cause to get hubby healthy! Any suggestions on how to get this machine working as its intended?? I will be going to the next appt with him and maybe jail after if the little nurse lady isn't more helpful. Lol hopefully I'm just kidding but this whole sleep study isn't cheap. Guess I should have started by saying he was short of breath one night all night and I made him go to urgent care- they thought was pneumonia but after X-rays and bloodwork ended up being enlarged heart and undiagnosed edema. He was put on water pills ( lost 35 lbs in 2 weeks) from swelling and cardiologist ordered sleep study. Just trying to keep my husband around a few more years but these Drs don't seem to concerned after they get your money. Thanks for letting me vent. Hugs
02-12-2016, 01:51 AM
First, let's clear up terms. CPAP pressure in measured in cm of water. 16 lbs (PSI) would explode a person.
Now, we need to know if the machine is an auto PAP or straight CPAP.
If it's an auto, it may be set to operate from 4 to 20 cm-H2O. 4 is usually found to be too low of a starting pressure.
If a CPAP, then it should be set to 16 cm-H2O; but the ramp may be on. Turn off the ramp so it starts at 16.
Your experience with the person who setup the machine is typical. And one reason this forum exists.
I'm not very familiar with the PR dreamstation. Did you request the clinican's manual?
We have several forum members who know much more about PR machines. Perhaps member Sleeprider will add to this thread.
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
Shocktowm, welcome to the forum.
Yes, there is a lot to learn, but first order the clinicians manual. This will tell you how to change settings and explain how your machine works.
Let us know whether you have an auto Cpap or straight pressure Cpap.
If an auto Cpap, you will want to set a pressure range around the perscribed 16cm.
An example would be: start pressure 13 and max pressure 18.
If you do not have an auto Cpap, then simply set the pressure at the prescribed 16cm.
It sounds like your husband doesn't need the ramp on, but if he wants to use it, start it at 8cm for 15 minutes. Starting ramp at 4 is way too low, and that explains why he couldn't breath. A lot of us do better without using ramp, but if he uses it, it should be set closer to the start pressure.
There is also a CFLEX (Cpap mode) or AFlex (Auto mode) setting. These are comfort settings that will help to exhale (breath out) against pressure. I would set this at 2.
Do you know what his AHI reading is? One thing you will realize is that you can't depend on a DME or equipment provider. Your husband will have to take charge, but will receive a lot of help and support here.
And it's Ok to vent.
How to Organize and Post ScreenShots
02-12-2016, 09:33 AM
Looks like we have two issues here.
1. Having your husband to adjust to the therapy.
2. Adjusting the machine to provide optimum therapy with minimum annoyance to your husband.
1. The best way I know is to start using the machine before going to sleep. He can watch TV, read a book or newspaper with the mask and machine turned on. This way he can get used to the machine and practice keeping his mouth shut. Actually, he should practice blocking the air by keeping his tongue up.
Chinstrap may or may not be necessary. That depends mostly on his ability to block the air coming out through the mouth. Some people successfully use nasal masks at high pressures without help for a chinstrap. For some, even at lower pressures, chinstrap is not helping because... one can breath out through the closed mouth and they did not have a good chinstrap. A good chinstrap puts a bit of an upward pressure on the lower lip helping to block the air. I didn't need to use a chinstrap for over ten years than, I started to blow air through my mouth. I went through 5 or 6 different chinstraps before I found the one that works for me.
2. To solve this one, it is essential to know the exact model of the machine you have. Have a look at the plaque that is on the bottom side of the machine. The model should be named there. Don't forget to take out the water container or disconnect the humidifier before flipping the machine over to read the plaque.
Everything I post on this board is nothing more than an opinion expressed by an apneak. Normally, it's based on facts and experience but sometimes, I may get things wrong or not have all the facts.
I reserve the right to change my mind. Why? Because tomorrow I may know better.
02-12-2016, 02:49 PM
WELCOME! to the forum.!
I am sorry your husband is having such a rough time with his CPAP therapy. Unfortunately, your experience with the DME (Durable Medical Equipment) provider is very common.
Both of you Just need to keep letting them know how you feel.
Hang in there for more answers to your questions.
I wish you both much success in getting your husband’s CPAP therapy needs met.
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