Ensoul, I'm so sorry that you cannot take back the machine.  Maybe you can complain to some agency there about this...I don't know what the exact rights are in this case, but it wouldn't hurt.  Do you get it through the hospital's DME (durable medical equipment)? or what?

I did a sleep study, which showed severe sleep apnea, then went back to get fitted so to speak, for a cpap unit.  However, during the cpap titration study, they found out that cpap wasn't enough, and I'd have to have bipap - I had both osa and central sleep apnea.  Fortunately, I hadn't gotten the machine for cpap at this time.  A bipap titration study would be scheduled.  Before it could be, I was back in the hospital - again - 6th time in as many months - with pneumonia, and the doc decided to give the bipap a trial using guestimated numbers.  Then, upon discharge, I was issued the bipap machine.  A week or two later, the bipap titration was scheduled, and even THAT wasn't enough!  I went in to have the machine calibrated with the new numbers and found out that I'd need a bipap ST - where the machine would 'take a breath for me' if I didn't breath 16x/min.  The DME through the hospital where I get all my stuff (except for diabetic supplies) graciously took back the machine, BUT...I had already 'paid for' the humidifier unit, so...I'll have to go without.  I also had to trade in my first portable oxygen concentrator (POC) - an Inogen One - because I needed both pulse AND continuous o2 flow - continuous for the bipap and 50' around the house tubing - my breathing has gotten so much worse, that it's even hard for me to be without oxygen while I run to another room to get something or do something.  I found out that the new POC has the capability of having a humidifier on it, so as soon as I can scrape up $25, I'll get it.  For now, the humidity is high enough - thank you - it's summer and HOT!

Then...another complication.  Instead of the COPD I was diagnosed with a few years back, I might have idiopathic pulmonary fibrosis - a degenerative disease that causes scarring of the lungs and is invariably fatal within 3-5 years - but a lung transplant can 'cure' it.  During my last hospital stay, my doc's colleague came into my room and mentioned "we're going to go for a lung transplant, probably U of M (univ. of mi), soon".  My regular doc, back in town a week after hospital stay, ordered an HRCT and echocardiogram.  Now, it looks as if I have what is called Pulmonary Fibrosis.  (IPF - the i standing for idiopathic).  The CT scan report said "thick bands of pulmonary fibrosis...' and other CT's stated parenchymal opacities, scarring, scarring throughout the lungs, and so on.  Now, whether it's the degenerative version called Idiopathic Pulmonary Fibrosis, or is just lung scarring and is not progressive, as long as the irritant(s) are gone, I don't know.  In either case, the scarring is irreversable.  I think the reason for lung transplant, even if it's not THE disease, is due to the nosedive my pulmonary function test results took.  Last year, my results were around 75% of predicted; this year, they're 20-30% of predicted with a distinct shift towards restrictive disease - so it's not COPD.  

That, plus the apnea, (both kinds) is what probably required me to have the bipap ST that will 'breathe' for me if I don't do 16/min.  The printout on the regular bipap showed - if I'm reading this right - 77 apnea events/hour (AHI - 77).

runnimh on liitle sleep..nothing worrking agian...so may not make since...you all have have been so nice and very helpful...didn't mention it before....I do get medicade...in my state anyway it's automatic when you get SSI you get medicade...if you get SSD you get Medicare..so think I'm lucky there..will find more tomorrow...I may take the scibre the new machine to a differnet store, why not since I go a use another store for my Worker's Comp (that pay's a whopping amnt of $100.24 every 2 weeks & I'm % 50 disabled in chronic pain from it) sorry for B#^*_ session

lynn

lynn I am sorry for your loss,I do hope things work out for you, you say you are 50% disabled for pain would you not be better off with SSD with Medicare? Instead of SSI and medicaid. I guess it would depend on the state maybe but ???  Anyway don't feel bad about venting and getting things off your chest, it does sound like you are having a rough time right now, but  just remember we are all here to help and support each other. Sometimes it just helps having some one to listen! Good Luck to You


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White Beard with a White Beard
Resmed VPAP Adapt SV Enhanced, HumidAire 2i, ResLink with Model 8000 Flex sensor Pulse Oximeter, and ResScan 3.5 software. Respironic EverFlo OPI Oxygen Concentrator 3 lpm
EEP 9.0, min PS 6.0, max PS 16.0

Ugh!  you all (I'm not from south, either) have to be sick of me by now....my Mother had to stop at her Doctor's office today, the same Dr that treats for my apnea (he's a pulmnolgist) Dr. P is excellent at treating my asthma he's very aggresive when it comes to that however; I still don't have the machine I need for the central sleep apnea because of his error! He read the first paragraph ordered me the APAP.  I do realize Dr's are very busy and on over load. His office cancled the recheck from the sleep study once all ready.  I don't get.  When I first got the APAP all he told me was go to this store (we live in a small town) I'll fax the paper work over, your apena is mild to moderate and your getting no REM sleep...explained NOTHING...my family is just the oppisite he explains everything, after my husband died he even asked if he could give me a hug, before he leaves the examine room he asks if theres any other concerns..this aggrogant twit...on the recheck it was me asking asking him Dr. P about my numbers (somebody had mentioned them here) then he says old on a sec and really started reading the entire report.

Since my insurance all ready paid for the APAP machine they're saying why should we pay another one given that's it's much more expensive, too...So when I had to pick up scribes for my Mom today (they told the scribes would ready in the morning) we went at 2:00 and they weren't done, of coarse..my Mother thinks he great doctor...then I had to bring up the problem with apena they tried ignoring me didn't work because I got louder and there were many people in the waiting room promised they're working on it

Dr. P is the pulmonolgist here and he runs the sleep study program at the hospital, small town we only have one hosp....it was my family dr. that refered (spelling) because I have chronic insomnia and have run out of med's to use I do see a, (can't spell) Psych Nurse Practioner for that...my family dr said we should rule out any sleeping disorders to be on the safe side and since the Dr. P the pulmnolgist runs the sleep study program I had to be refred to him

what a long strange life we live

Lynn M

I also have severe Central and Obstuctive sleep apnea. I first was put on a cpap, this is because the insurance company trys to make you use this first before qualifing you for the more expensive machines. My Neuro Sleep specialist put me on a Resperonics Bipap Auto SV unit. A newer model. Works great. As soon as I stop breathing the machine sense this and starts breathing for me. I still have centrals. Some people have centrals because they have had untreated OSA for so long that it has caused the brain to not communicate correctly. Overtime this issue will adjust. Others it will not and it is a Neuro issue. Some doc's will never find why you may have Centrals. And you may have them for the rest of your life.

But I have been doing great so far on the machine. The only issues I still have are the centrals and my Tidal Volume is very low and my Breaths per a minute are high. So there is still a lot of tweeking that they are doing, but I am very confident in my Neuro doc. He is a board certified Sleep Neuro doc. I made sure of that before I was sent to him.


_________________
Severe Central & Obstructive Sleep disordered breathing
AHI:116.4
Lowest Sat 85% High96.1%
Total Central,Obst,& mixed 190/hr
Out of that total 66 were Hypopneas
IpapMin7 max16 Epap6
Bipap Auto SV
Resmed Mirage Swift II

mlwl:

how did you find your dr---find one that was board cert in sleep?

also, will you explain the info under your name?  i don't understand why the AHI is different from the total number of apneas/hypopneas.

thanks

embryopathy wrote:

mlwl:

how did you find your dr---find one that was board cert in sleep?

also, will you explain the info under your name?  i don't understand why the AHI is different from the total number of apneas/hypopneas.

thanks

The AHI is just my Obstuction. With my Central and my Obstuction together it was a total of 190 an hour.

As far as checking to make sure that he was Board Cert, I had my PCP do that. And he did, and then I went online to look him up to just make sure. If you google the docs name all the info will come up.


_________________
Severe Central & Obstructive Sleep disordered breathing
AHI:116.4
Lowest Sat 85% High96.1%
Total Central,Obst,& mixed 190/hr
Out of that total 66 were Hypopneas
IpapMin7 max16 Epap6
Bipap Auto SV
Resmed Mirage Swift II