Just Diagnosed BiPap User to be, and new to the boards.

[AdmiralCougar]

OK I know I've made a couple other post here but I'm gonna make this my official new member post... Anyway I'm a 30 year young lady and I had my first sleep study on Monday. Needless to say for the first 3 hours I had some of the worst sleep I've ever had in my life. Then at 2am I was put on the machine till 7am when it was over. I was still so tired that they ended up keeping me there and on the machine till almost 1pm cause they were afraid I wouldn't be able to drive home. Which truthfully I probably still shouldn't of left then either I still had a hard time heading home even after I spent about 20 min in the parking lot trying to wake myself up some more, but I the new tech that replaced my sleep tech when she got off kind of creeped me out. It wasn't that she wasn't nice she just gave off vibes. Anyway I ended up on BiPap with high pressure, surprisingly I was on the machine all that time with only having to remove the mask a couple of times mostly because of leaks and the tech changing mask sizes, oh and masks types once I was on the BiPap. I'm pretty proud about that since I had been put on a machine in the ER in June to help get my CO2 levels down and I couldn't keep the machine on. Turns out besides the fact I'm claustrophobic, I found out that the reason I couldn't stand it and felt like I was suffocating was because the machine at the ER was on timed and it didn't have any pressure or very little which made it feel non existent on the off time and I was breathing faster than the time so I kept inhaling the air that I just exhaled.

So anyway at the sleep lab I was told I had a real Severe case and they would be rushing my results to my Pulmonary Dr. and I may hear back by next week. Today (well yesterday now) I got an e-mail back from her and she sent this.

I will contact you with the results of your sleep study once it has been read but the preliminary results show you have severe obstructive sleep apnea and your oxygen levels went very low. I am going to order the BiPAP machine for you so that they can get you scheduled to pick that up. After your test has been read, we may need to change the pressure or possibly add oxygen or maybe even repeat a study so that we can find the ideal pressure for you.

So as much as I should be disappointed in the fact that I have this condition, I'm pretty much happy that things are finally getting taken care of. Anyway I really don't know much about anything even though I've been trying to research things and everything. I do know that I'll have to pay 20% of the cost of my equipment. From what I've seen around I realize there are allot more cpap and apap users around, but I haven't really heard anything about BiPap machines and which brands or models I should be looking at or considering I'm on Kaiser insurance so I'm not even sure how they work it if it's an in house DME or if they only offer one machine. As fast as things have been moving I expect I'll be getting a call in the morning about arranging pick up of a machine, so I suppose I'll be finding out about the DME then.

Anyway so far the sleep lab tech I had for my actual study was awesome. She was totally understandable about my claustrophobia, and explained to me allot about the machines and how the pressure worked, and the humidifier and got me over the hurtle of the fact that at least off the machine I can only breath cold air as cold as I can get it preferably and definitely not humid. She even explained why my sinuses clog up the moment I lay down practically, which they have done ever since I was a kid. Now my Pulmonary Dr. She seems ok, I've only ever seen her in person once for about 10 min maybe while she had me watch a silly video about sleep apnea and then said she was referring me to the sleep lab and lung function tests then gave me a prescription for a sleeping pill for the night of the lab, and an inhaler. So far the lung functions test came back with duh small lungs which I expected, and said they didn't rule out asthma. So I'm still not sure what to think of her. Which leaves the DME....

Anyway so far this is me, any info on the BiPap machines I should know about would be great. I feel so overwhelmed with everything I'm not sure what to do next or what really to expect. I'm just thankful I found this great community of people who are willing to help us newbies out.

Man this is the longest post I've ever posted on any forum, so if you managed to actually read through thanks for reading through my still sleep deprived ramblings....

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CPAPopedia Keywords Contained In This Post (Click For Definition): bipap, humidifier, video, CPAP, DME, Prescription, APAP

[Moby]

Welcome, AdmiralCougar

Hope the next few days/weeks go smoothly for you, and that you get the equipment really soon.

There's lots of knowledgeable people here to help with glitches and queries, also I'm glad that it seems you have some helpful and caring professionals looking after you.

Keep us posted

Do

[Sergey45]

Hello AdmiralCougar!
And welcome on board.
The next big thing for you will be picking up the right mask. Considering that you are claustrophobic and complexity of this process in general it will be not an easy task. I am currently testing FF 432 and will update my mask’s log as soon as I’ll finish.
http://www.sleepapneasymptom.medgrip.com/cpap_mask.html
I’d like to wish you luck in your treatment. Be patient and don’t panic if something will not go smoothly from the beginning.

[RosemaryB]

Welcome AdmiralCougar! Thanks for telling your story. I'm very glad that you got diagnosed and are being taken seriously.

There are some bipap users on here. If you have questions about the bipap, it can help to state that you are a bipap user in the title. If you click on the yellow lightbulb at the top you will find some good information. The faq is also highly recommended, One of the links in there (somewhat buried) discusses the cpap, apap, bipap, xpap. Here it is
viewtopic.php?p=56836

Once you get your machine, you can fill out your profile with your machine and mask, which will help people give you relevant information. Just click the "profile" icon at the top of the page.

Another imporant area is getting a good mask from the start. This means getting a good mask fitting. If your insurance pays for it, you should interview all the DMEs in your area to find if they do mask fitting and how many different masks they will let you try on. Some of them limit it to one and others will let you try on 4 or 5. If you get an RT who has experience, they can help by looking at your face and giving some idea of the mask that may be good.

Another route with mask fitting is to try and find a good hospital sleep clinic where you can try on mask. Although the two major sleep clinics in my area (famous for their research and very big) don't offer mask fitting, there is a smaller hospital in a nearby city that does. Another, at a further distance, offers this service for a small fee.

Although you may not find "the mask of your dreams" immediately, getting one that works well enough will help a lot. Mask fitting is a very, very individual thing. The mask one person loves may be a disaster for the next person. As the old saying goes: "One person's meat is another person's poison". Once you find a decent fitting mask, there are plenty of ways to improve it that will be posted under the lightbulb icon. Just post at that time and people will help.

I don't know much about which bipaps to recommend, but proably some of our members who use them will chime in.

Good luck, and keep posting! It can make a tremendous difference in your success.

[TxDreamseeker]

Welcome AdmiralCougar,

I'm a Bipap user with severe sleep apnea and a pressure of 20/16. Currently use a Resmed VPAP III (insurance paid for) but have a Respronics Bipap Pro 2 as a backup machine. I prefer the Resmed, but maybe because it was my first machine and I'm used to it. There are a few "comfort" settings you will want to know about to help you with whichever machine you use. If at all possible, push for a data capable machine so you can keep track of your therapy. Since they can't pinpoint your ideal pressure, ask (or email) the doctor about a Bipap Auto instead of repeating your sleep study. They can keep track of your nightly data and find a good pressure for you. Check the price of Bipaps on cpap.com. This will give you some idea of what your 20% copay will be. It is hard to think of at this point, but if the machine they give you is the cheapest on the market, you might want to save up and get a good one online.

I also have claustrophobia and made a nasal pillows mask work for me. The mask is the key. If you have to pickup your machine and mask from a DME, I suggest you read Slinky's excellent initial mask tips here

viewtopic.php?t=23083&highlight=sore+no ... 5a3fd7464d

Do as much research as you can before you go into this. A little knowledge in this area goes a long way.

Good luck.


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CPAPopedia Keywords Contained In This Post (Click For Definition): resmed, bipap, cpap.com, DME, Nasal Pillows

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CPAPopedia Keywords Contained In This Post (Click For Definition): resmed, bipap, cpap.com, DME, Nasal Pillows

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CPAPopedia Keywords Contained In This Post (Click For Definition): resmed, bipap, cpap.com, DME, Nasal Pillows

[AdmiralCougar]

Thanks allot for the information guys... and I hadn't realized there was also a BiPap Auto, and I totally going to do my best to get a data capable machine. Though we don't want to spend up our whole savings if we don't have to my husband and I have gotten about $400 saved up. I'm not so sure how much the DME markup will be compared to online, but as long as between the machine and mask doesn't come to $2000 we should be ok.

And after the response I got from sending my Dr. some questions I'm a bit unsure of her, but I'll try asking about the BiPap Auto.

[cflame1]

don't forget about billmyinsurance.com as well... they might deal with your insurance

[AdmiralCougar]

don't forget about billmyinsurance.com as well... they might deal with your insurance

Oh good idea, though my insurance is Kaiser so the way they do other things I doubt that they would work with them.

OK I got up the nerve and emailed the Dr. about BiPAP Auto but I know she's gone for the day so I wont hear anything till probably Monday.

Thanks again guys

[rested gal]

The Respironics BiPAP Auto with Bi-flex is the bipap I'd want.

I don't actually need a bipap machine at all...I'd do fine on straight cpap @ 10. But I sure do like the feel of "natural breathing" with that particular machine.

The bi-flex feature is icing-on-the-cake comfort softening even more the beginning of the nice lower exhale setting.

I'm very much into comfort in a machine I'm going to be using every night for the remaining third of my life!!

[Snoredog]

I'm with RG, I'd get the Respironics Bipap Auto, you can run it in any mode.

[SAG the Guest Again]

...I had been put on a machine in the ER in June to help get my CO2 levels down...

Was that a respiratory, cardiac or combination event? What was your CO2 level then (and now)?

I'm with RG, I'd get the Respironics Bipap Auto, you can run it in any mode.

Not quite, it doesn't have a Timed Mode.

The BiPAP AutoSV, on the other hand...

SAG

[StillAnotherGuest]

Now if I can just figure out how I did this...

[j.a.taylor]

AdmiralCougar,

Welcome to the board!

There seem to be a whole bunch of us newbies joining lately, so I'm excited to see what we learn from all these veterans.

I know they've already made my journey easier.

[AdmiralCougar]

Thanks guys that's good information, and now I have something specific to look for.

...I had been put on a machine in the ER in June to help get my CO2 levels down...

Was that a respiratory, cardiac or combination event? What was your CO2 level then (and now)?

Well it's a long story but I'll try and make it as short as possible. I hadn't seen a Dr. for 5 years. Mostly because we didn't have health insurance for most of it, then the last two years we had health insurance but we couldn't afford the copays, barely making it from paycheck to paycheck it was more of an emergency insurance to us just in case we had no choice but to go to the Dr. so as to help limit the bills if it something happened. Well In April my husband got a great new job, but he wouldn't be eligible for coverage through them till the first of July. So since April my poor husband has been working both Jobs (40+ hours at the new job and 24+ hours at the old per week) to keep the insurance active until the new insurance kicked in, and still working both now because he will hit his vacation pay next weekend so September 2nd will finally be his last day. So with the extra income we were able to pay off all our bills but our student loans. I have this phobia about hospitals and Dr. as well which is one of the reason I could never justify us spending grocery money on me going to the Dr. but now without the Justification that we didn't have the money I'd set the new July as the date I would go in to see the Dr. See I have Hypothyroidism and have been on the same Dosage that I was on 5 years ago only because I've been able to get a hold of family members old prescriptions they didn't need anymore. I realize that is way bad, but when you're broke and need it to just get by you take what you can get. Of course I had so needed a new prescription over that time.
Well about two weeks before the new better lower copay insurance kicked in I got what I thought was an eye infection. It was bad couldn't stand it, and it was interfering with my vision. Big swollen weeping eye. So I broke down and went to the Urgent Care. I didn't have a personal care provider yet, but I figured that since I was going in for my eye they might be able to at least get me started with my thyroid by asking for a blood test while I was there, plus I promised my mother that I would mention something else even though I figured they couldn't do anything even if she wasn't over exaggerating. See it seems when I fall asleep (which is fairly often because I'm always so tired) on the couch I have a tendency to stop breathing and turn purplish blue so she insisted I had sleep apnea like my father (who refuses to treat himself) When I mentioned that to the triage person they also asked if I was having shortness of breath, and my stupid husband pipes up yes and that I've been having chest discomfort. Well what you got to understand is I'm a very big person at that time I weighed in at 513 and of course I'd have shortness of breath, so I wasn't going to mention anything about it, but now the triage person for Urgent Care was freaking out and refused to see us and sent us straight to ER. Which they of course could care less about the whole reason I came in then which was my eye. The Dr. there wrote it off as pink eye without even looking at it, my eye wasn't even remotely pink. So while there they took a ton of tests, x-rayed my chest asked why now of all occasions I had chosen to come in for what I had been experiencing daily. Now if I should of gone to the ER for shortness of breath and chest discomfort it should of been about a week earlier on my Birthday when I had a really rough day mostly because of the heat, but it was bad enough that all my family tried to make me go, but I flat out refused because it was my birthday and I would not spend it in the hospital. Anyway I had also mentioned to the ER Dr. about possibly having sleep apnea, and all I know is that they ran a whole bunch of tests and came back and said that I had very high levels of CO2 and they wanted to put me on a CPap to help clear up the CO2 problems I can't remember how long I had been trying to use the machine, but they finally came back saying that they wanted to keep me over night. At this point after being there hours I was beyond clarity, and was not in condition to make much decisions, and my silly husband instead of agreeing that I should stay could only keep saying how will I get home (since he doesn't drive) Which was completely silly cause he could of just called my parents and they would of picked him up (we live with them) and they were only a 15 min car ride away. So ER released me and sent me home which I shouldn't of been driving but I did. Turns out that not 15 min after we left they tried calling me back in because more test results came back and I was so severely anemic that I needed a blood transfusion. But they couldn't get a hold of me because even though we gave them our new phone numbers the system still had our old one. Anyway we left with instructions for me to see my Dr. the next day and the ophthalmologist for my eye in 3 days. So we called up and got the earliest appointment with any Dr. which still ended up being the day after that. I love his name I cracked up laughing on the phone when the nurse said it... Dr. Beaver... See it has two reasons to crack me up one I wont mention if you already don't get that then well I wont repeat it, two my husband and I are Oregon State University Alumni which are the Beavers I also got an appointment while I was waiting for some more tests to come back for Dr. Beaver with the Ophthalmologist which low and behold I only had an allergy and no silly pink eye (waist of money on that prescription) So anyway I ended up back in the hospital anyway getting a transfusion right after I saw Dr. Beaver and ended up on the fast track with the Pulmonology department to determine if I had OSA. Oh plus he nearly doubled my thyroid prescription which has been so far good and I've lost as of the night of the sleep lab 18 lb.

Wow I'm long winded... and took me way to long to write.

So the fast track in Pulmonology continues because after the sleep study they decided I do have Severe OSA. Which is scary because between nightmares and what not I'm totally afraid to lay down and try to sleep. I just hope that the DME moves as fast as Kaiser has been.

[SAG the Guest Again]

OK, sounds like you got (at least) 3 things going on here:

1. Obstructive Sleep Apnea (OSA);
2. Obesity Hypoventilation Syndrome (OHS); and
3. Uncontrolled, severe hypothyroidism (at the time of the sleep study, anyway).

Severe uncontrolled hypothyroidism can contibute to the respiratory failure associated with OHS, so addresssing that may help out a bit. Transfusion-requiring anemia (presumably)(hopefully) from the hypothyroidism in a situation where you should be polycythemic is incredibly dangerous. Tranfusion usually occurs when your H/H drops by about a third, so couple that with the low O2 sats of the OSA/OHS and the O2 carrying capacity is reduced by tons.

OK, since that's on the mend, that leaves us with what sounds like some pretty nasty OHS and the OSA.

While BiPAP can be very effective in attacking OSA (simply splinting the obstructed airway open), it may not be effective if your physician wants to address the OHS as well. The goal there will be to try to reduce the pCO2 and rest the respiratory muscles at night by providing Pressure Support (PS)(augmented breaths) to reduce the work of breathing and drop your pCO2 level (there's a whole school of thought that says that doesn 't work, but let's hold on that for a minute).

The problem with plain old fixed-pressure BiPAP is that it may not provide enough PS to accomplish that goal. And an AutoBiPAP will probably not respond to the shallow breathing associated with OHS. Even if you do set an aggressive PS, the body may respond by simply slowing the number of breaths taken, and the pCO2 stays the same.

In order to overcome this, a machine with a Back-Up rate may be chosen. A minimum number of breaths can be set such the machine will guarantee that no fewer than that quanity will be delivered. A Respironics Synchrony S/T may be selected to accomplish this.

OK, the naysayers of the resting philosophy of BiPAP for OHS say that the PS associated with conventional BiPAP is still unpredictable. While this may be so in some cases, there is an option with the Synchrony that will overcome this called Average Volume Assured Pressure Support (AVAPS). This mode automatically adjusts the pressure support level of the patient to provide a consistent tidal volume.

http://www.chestjournal.org/cgi/content ... /130/3/815

Of note, baseline oxygen saturations improved with this modality.

Anyway, your physician might want to address both components simultaneously, and if so, a machine with a Timed Back-Up Rate might be first up.

SAG

PS - It would be even funnier if Dr. Beaver was a gynecologist.