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New, scared and looking for advice
#11
(09-29-2013, 08:43 PM)PsychoMike Wrote: Welcome Shari...I'm glad you're started down a road to (hopefully) better health.

If you call the HMO, it might be a good thing to mention that they can expedite the CPAP now, or may need to cough up for cardiac surgery in the future as the apnea is already causing a heart condition (the thought of the cost difference may light a fire under their butts). Wink

another great suggestion! Maybe Shari can buy the machine from Supplier #2 and let her insurance cover the humidifier, etc. They still need a fire lit under them!
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#12
The first thing to remember, is you have survived this long with this problem not being known (for who knows how many years) - not comforting, but it is what it is.

I used to be a long-haul truck driver. Never had any safety issues due to the apnea I had and knew nothing about. THe straw was going in for my yearly health check, and finding my resting pulse would not drop below 122. Long story short, was caused by life-threatening sleep apnea. AHIs were 80+, low O2 SAT 62% (turning smurf-like) - could not eat first 4hrs after waking for years - never dreaming - on and on.

Took some eight years on CPAP and heart meds and now my at rest pulse is in the low 80s. Today, at rest pulse is low 70s with no meds. I do not even take a 30 minute nap without my dream machine. It will take some getting used to, but as it really is life threatening, you *will* both get used to, and be thrilled with your machine.

If really worried, possibly take turns sleeping with hubby's machine? Crazy...but???
*I* am not a DOCTOR or any type of Health Care Professional. My thoughts/suggestions/ideas are strictly only my opinions.

"Only two defining forces have ever offered to die for you. Jesus Christ and the American Soldier. One died for your Soul, the other for your Freedom."
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#13
At least take some nap time with your husband's machine. You might want to check what pressure they decided on in the sleep study.
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#14
Hi Shari!
Welcome

You are in the right place!

You got the sleep study done and that is good news.
If you can swing it I would not wait for the HMO this time.
If you can scrape up $1000 and lean on your doc to write you a prescription for a Resmed S9 AutoSet
you can start your therapy right away.
(maybe you can grab a spare mask from hubby)

This lame excuse of "there is nothing I can do about it" is total BS.
He/She CAN write you a prescript and get you going.
Sooner is better and worry about the insurance re-imbursiments later.

Hang in there and keep the faith!


Peace, Love and Carrots

Sleep-well



"With ordinary talent and extraordinary perseverance, all things are attainable." - Thomas Foxwell Buxton

Cool
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#15
RE: So here I sit, night after night... afraid to go to sleep without a machine for fear I won't wake up.

Hi. I don't have diastolic dysfunction, but here's what they told me to do while I waited on the machine: Sleep in a chair as upright as you can. No heavy drinking and don't drink alcohol in the evening at all. No heavy meal after lunch. Anything that relaxes you (including certain medications) makes your ahi worse. I don't know if sleeping upright will make your heart condition worse or not, and doubt if your doctors do either. See if you can rent a machine by the month and pay for it for it yourself while you wait on the HMO. I'm told your sleep doctor can give you a prescription and you can get if filled anywhere you want, not just the place they sent you to. It might be unorthodox but you might offset your and your husband's sleep hours a little and use his machine (if that's legal) while you wait on your machine. I've read there is a way to buy masks over the internet without a prescription. Did any of your doctors mention beta blockers or calcium channal blockers for the treatment of diastolic dysfunction? It's obvious you are going to have to study and bring your doctors up to speed on your condition and treatment. Good luck.
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#16
(10-03-2013, 09:00 AM)Shastzi Wrote: This lame excuse of "there is nothing I can do about it" is total BS.

There is at least a decent chance that the patient will need something more advanced than a simple CPAP or APAP.
Sleepster
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#17
Hi jim123,
WELCOME! to the forum.
trish6hundred
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#18
Hi Shari

Firstly, good on you that you got a diagnosis. Yes it is alarming, but don't panic - the chance is not all that high that you will suddenly drop from this while waiting for your machine ( I do not use Resmed, btw, and if they offer you a Respironics, it is okay to say yes - they are very good machines, indeed, over here are preferred over the Resmed, but I suspect that has to do with pricing policies, since both companies offer equally good machines).

Once on the device and following good compliance, your heart condition should lessen and even "cure" itself in just over a year (no, not really cure, there is no such thing, just that the heart will regularise itself again as your body adjusts to the new sleeping pattern), if current statistics are correct, and in the meantime, it is far less life threatening than you may think. It sounds scary, and yes, anything to do with the heart is, but you are not in immediate danger. So relax and don't fret, just get your PAP device and get to it. Your worrying will do far more damage than your SA at this point, so don't. Let go of the tension and welcome the fact that you will soon have a therapy that will do all you need it to. And good luck.
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#19
Shari- welcome to the forum. It's a bummer when you get a diagnosis of sleep apnea (severe) and a heart problem caused by the sleep apnea and you can't get a machine.
Fortunately it's fairly easy to remedy if you have have $300 (maybe less)for a new machine. Check out the online retailers, #2, on the list is good, and there is a used store for second hand machines starting at $70. I realize most of us don't have much extra money on hand. If you buy a new machine at $70, a mask for an average of $100, and your tubing you're set. All you need to get started is a prescription for the machine and mask.
Keep us posted,
Mary
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#20
Your husband has a prescription , you could get him to buy you the stuff until the insurance comes through and use this one for backup for you both.
Number 2 supplier is a great source , I would start out with an apap a Respironics ds 560 is a great machine . That should settle you down for the wait .
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