Post Reply 
New, scared and looking for advice
Author Message
me50 Offline

Advisory Members

Posts: 2,559
Joined: Aug 2013

Machine: resmed S9 VPAP Auto
Mask Type: Nasal mask
Mask Make & Model: Wisp and Silicone Head gear
Humidifier: resmed H5i
CPAP Pressure: 18/8
CPAP Software: SleepyHead

Other Comments:

Sex: Undisclosed
Location: USA

Post: #11
RE: New, scared and looking for advice
(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!
09-29-2013 09:02 PM
Find all posts by this user Post Reply Quote this message in a reply

Donate to Apnea Board
Peter_C Offline

Advisory Members

Posts: 1,308
Joined: Sep 2013

Machine: System One DS960HS
Mask Type: Full face mask
Mask Make & Model: Mirage Quattro "MED"
Humidifier: Attached
CPAP Pressure: Auto mode-script is:15/3/3
CPAP Software: EncoreBasic Other Software

Other Comments: Severe obstructive sleep apnea 1999/Just got an ASV machine

Sex: Male
Location: Akron, Ohio USA

Post: #12
RE: New, scared and looking for advice
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."
10-02-2013 01:34 PM
Find all posts by this user Post Reply Quote this message in a reply
lincolnr Offline

Members

Posts: 14
Joined: Sep 2013

Machine: Resmed Elite II
Mask Type: Full face mask
Mask Make & Model: Respironics Comfort Gel Blue
Humidifier: Resmed Humidaire 31
CPAP Pressure: 12 or 14 I forget
CPAP Software: Not using software

Other Comments:

Sex: Male
Location:

Post: #13
RE: New, scared and looking for advice
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.
10-03-2013 12:20 AM
Find all posts by this user Post Reply Quote this message in a reply

Donate to Apnea Board
Shastzi Offline

Advisory Members

Posts: 1,174
Joined: Dec 2012

Machine: ResMed S9 Autoset
Mask Type: Full face mask
Mask Make & Model: FitLife Total face mask
Humidifier: F&P HC150 with Hybernite heated hose.
CPAP Pressure: 15cm-20cm H2O (auto)
CPAP Software: SleepyHead Other Software

Other Comments: CMS50-F wearable Oximeter; Software: SPO2 Assistant

Sex: Undisclosed
Location: Florida, USA.

Post: #14
RE: New, scared and looking for advice
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
10-03-2013 09:00 AM
Find all posts by this user Post Reply Quote this message in a reply
jim123 Offline

New Members

Posts: 1
Joined: Oct 2013

Machine: remstar pro c-flex+
Mask Type: Nasal mask
Mask Make & Model: unsure
Humidifier: remstar
CPAP Pressure: 12
CPAP Software: Not using software

Other Comments:

Sex: Undisclosed
Location:

Post: #15
RE: New, scared and looking for advice
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.
10-03-2013 10:46 AM
Find all posts by this user Post Reply Quote this message in a reply

Donate to Apnea Board
Sleepster Offline
Wiki Editor
Moderators

Posts: 4,994
Joined: Feb 2012

Machine: ResMed AirCurve10 VAuto
Mask Type: Full face mask
Mask Make & Model: F&P Simplus
Humidifier: HumidAir and SlimLine Hose
CPAP Pressure: MaxI 13.6 | MinE 5.2 | PS 4.4
CPAP Software: ResScan SleepyHead

Other Comments: Diagnosed Nov 2011. Conquered aerophagia.

Sex: Male
Location: Houston, Texas

Post: #16
RE: New, scared and looking for advice
(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
Apnea Board Moderator
www.ApneaBoard.com


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.
10-03-2013 12:27 PM
Find all posts by this user Post Reply Quote this message in a reply
trish6hundred Offline

Advisory Members

Posts: 6,449
Joined: May 2012

Machine: Resmed S9 AutoSet for Her
Mask Type: Full face mask
Mask Make & Model: Fisher & Paykel Simplus
Humidifier: H5i Heated Humidifier
CPAP Pressure: 10 - 7-20 Cm H2O
CPAP Software: Not using software

Other Comments: I started CPAP in 2008. Totally blind since birth.

Sex: Female
Location: Missouri, USA

Post: #17
RE: New, scared and looking for advice
Hi jim123,
WELCOME! to the forum.

trish6hundred
10-06-2013 09:02 PM
Find all posts by this user Post Reply Quote this message in a reply

Donate to Apnea Board
DocWils Offline

Members-b

Posts: 1,271
Joined: Jul 2012

Machine: Philips Remstar series 60
Mask Type: Nasal pillows
Mask Make & Model: ResMed P10
Humidifier: same as machine
CPAP Pressure: 5-15
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location: Switzerland

Post: #18
RE: New, scared and looking for advice
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.
10-07-2013 05:06 AM
Find all posts by this user Post Reply Quote this message in a reply
skyler Offline

Preferred Members

Posts: 75
Joined: May 2013

Machine: Respironics ASV
Mask Type: Nasal mask
Mask Make & Model: Respironics Wisp
Humidifier: System One Respironics
CPAP Pressure: 8-12-20
CPAP Software: Not using software SleepyHead

Other Comments: Diagnosed February 2008

Sex: Undisclosed
Location: Norfolk, Virginia

Post: #19
RE: New, scared and looking for advice
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
(This post was last modified: 10-07-2013 08:14 AM by skyler.)
10-07-2013 08:12 AM
Find all posts by this user Post Reply Quote this message in a reply

Donate to Apnea Board
knightlite Offline

Preferred Members

Posts: 24
Joined: Jul 2013

Machine: respronics ds560
Mask Type: Full face mask
Mask Make & Model: mirage quattro
Humidifier: resperonics
CPAP Pressure: 10-14.5
CPAP Software: SleepyHead

Other Comments:

Sex: Undisclosed
Location:

Post: #20
RE: New, scared and looking for advice
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 .
10-08-2013 06:24 PM
Find all posts by this user Post Reply Quote this message in a reply
Post Reply 


Possibly Related Threads...
Thread: Author Replies: Views: Last Post
  Newbie - need advice on settings and machine tmc712 18 364 Yesterday 09:04 PM
Last Post: tmc712
  Need full face mask advice Bob32256 12 654 Yesterday 04:37 PM
Last Post: Zippo
  advice for diagnosis steps to take odoyle 14 540 12-05-2016 08:44 PM
Last Post: Sleeprider
  [Equipment] Advice on transitioning from pillows to FFM? Strat0caster 8 236 12-02-2016 10:58 PM
Last Post: PaulaO2
  ADVICE ON THIS DATA Gazz 3 259 11-21-2016 11:13 AM
Last Post: OpalRose
  new user wants advice Gazz 3 235 11-19-2016 11:06 AM
Last Post: trish6hundred
  Advice needed for struggling CPAP user Fubblin 35 1,980 11-18-2016 07:18 PM
Last Post: Sleeprider

Forum Jump:

Who's Online (Complete List)