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10 years 11 months ago #26881 by britt
Julie, Ive seen the unit that I sould get from VA. They have an attachment to add distilled water to humidiy the air so as to prevent drying of the throat.
The difference between the 2 units is quite a lot. The BIPAP unit not onlt forces the air in abut on the exhale it removes it. Its an odd feeling. If you get off pattern you miis your breaths and cant breathe, Similar to hyperventiilating. When I panicked that first time they removed it i was catching less then 1 out of 20 breaths. The big unit in ICU had a monitor to display how you are matching the in/out cycle with the machine.
I had some aniety last nite. I didnt doze off until about 5AM. When I woke at 1030 I was a bit disoriented and confused. My chest was congested and I got a bit worried. The attaakcs Ive had were just out of sleep and when clearing my throat. I sat there doing "purse breathing" for about 5 min until I was sure I was ralaxed and OK. I did a nebulize treatment and feel pretty good now. I am amazed at how well rested I can feel off 5 hours sleep.
britt

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10 years 11 months ago #26880 by Julie
Britt, My husband wore a CPAP for years. He was even more comfortable when they came out with nasal pillows instead of a face mask as he was much more comfortable. Whenever he was in the hospital I would bring in his own CPAP machine so he could use it. If they wouldn't allow his machine I would bring in his head gear so he could have the set up that fitted instead of whatever they had lying around the hospital. The last 18 months he was on oxygen and there was a place to insert the line so he got oxygen in his air.

He would wear the CPAP whenever he was lying down. So if he was reading in bed for instance he would be wearing it. I think you might feel better if when you wake up you sit up on the side of the bed with the apparatus on then turn the machine off. If you start to have breathing problems you can turn the machine on again until you are comfortable then turn off the machine. When you are breathing without the CPAP then take off your head gear.
This is not medical advice just from the wife of a CPAP user.

Regarding CPAP vs BiPAP when they did your sleep assessment they would determine which you would need. Dick never did wear a BiPAP but the hospital staff kept referring to his machine as one as they didn't note the difference.
After we moved to Tucson when he got a new machine he got one with the ability to put moisture in the air. I think it is much more common these days to include the vaporizer. My daughter, son-in-law, daughter-in-law all use the same set up and they are in Minnesota and Washington State. All of them report much better sleep.

Are you getting in help in managing your panic? Sounds like the start of a vicious cycle when you start to panic. Julie

Volunteer Coordinator
ABLSC

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10 years 11 months ago #26876 by britt
Stephany,did he only use it at nite or did he have bad spells requiring him to wear it during the day time? After my 1st nite on the BIPAP they took it off when the day crew came on. With in 4 min I was panicing begging for it back! It was a matter of panic. I just couldnt articulate my breathing and wasnt geting air. The next morning I was fine and the same the last nite on CPAP. Honestly i upset the dr for not wearing it this weekend. the 1st day i was too afraid and the second I had done nothing but sleep and was not up to the thought of wearing it all nite +while awake.

I sure hope this is temporary. i could live with being short of breath thats been my life for years now. Ive just learned to breathe. Locking up like that all the time will drive me past my limuit to endure. Im nearly there now!

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10 years 11 months ago #26874 by Stephany
Britt, my husband had a bipap for home use, and he got to the point that he went nowhere without it. It took awhile to get it calibrated, though. I hope you can work through all the problems and get some relief.

Stephany in Iowa

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10 years 11 months ago #26872 by britt
Thanks folks. It will be a CPAP not BIPAP. Im not sure if they even offer the BIPAP for home use. Its such a shame that they had to drag their feet on this. if we would have done it in Feb all would have been well.
One thing I do have to address is the attendant derpression that has developed thru all this. On top of that the anxiety alone can trigger an episde.
I had read about something called staticus asmaticus that really hit home and woriies me. The Pulmanry Dr attending me this wekend hadnt heard of it. Its scary the things we find on the internet while lookning for something else!
Take care all
britt

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10 years 11 months ago #26871 by mmc
Britt,

Wow! :blink: What a scary thing. Glad you are doing better now and have a CPAP.
Those cytologies should give you some assurance though.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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