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New, scared and looking for advice
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shari Offline

New Members

Posts: 1
Joined: Sep 2013

Machine: unsure
Mask Type: Nasal pillows
Mask Make & Model: unsure
Humidifier: unsure
CPAP Pressure: unsure
CPAP Software: Not using software

Other Comments:

Sex: Female
Location: southern CA

Post: #1
New, scared and looking for advice
Hi, my name is Shari... I'm from southern CA. Been having headaches, heart palpitations and extreme tiredness. My less than helpful GP chalked it up to various "things it could be". Lucky for me I happened to see an "on-the-ball" Dr. in urgent care a couple of months back who ordered a sleep study and an echocardiogram. I have a not so great HMO that's big here in socal... and they sent me home with a do-it-yourself sleep study monitor after taking a group class on sleep apnea. They contacted me a couple of weeks later by mail saying I had very severe OSA. Results were basically I stop breathing on average 125.9 times per hour. Average O2 sats were 93%, lowest shows dipping down to 62% 02 sats. They made an appt a few weeks later for me to take home a machine, Phillips Respironics Remstar Plus C-Flex on loan for 5 days for a titration study, giving me Swift FX nasal pillows for a mask. I seemed to tolerate it well, the only negative thing is my lungs and sides seemed to really ache when I took it off it every morning. This HMO that I have loves to drag their feet with everything. They are saying it will be 4-6 weeks before I see my machine. My husband also has sleep apnea... he's had his machine about two years now. It took this same HMO almost A YEAR to finally get him his machine.

Now comes the part where I am scared... I also got the results from my echocardiogram the same week as my titration study. My GP told me I have a heart condition what's called diastolic dysfunction - grade 1. I do not have high blood pressure, so he is telling me it was most likely caused by years of untreated sleep apnea. I asked my GP (and followed up my question via email for a paper trail) if he could possibly please expedite my machine to me, given the fact of this heart condition diagnosis. Nope.... his answer was "unfortunately I have no control over that". Great... so here I sit, night after night... afraid to go to sleep without a machine for fear I won't wake up. To top it off, he's being less than helpful in answering any of my questions re: the DD diagnosis in relation to the sleep apnea... long term prognosis etc. He even said at this point he didn't feel my condition "warranted a referral to a cardiologist". I followed up our appt. with an email saying I REALLY need to see one... so he is finally referring me to one now. Is there anyone else here who has had a diagnosis of diastolic dysfunction due to sleep apnea, and if so... can I hear some of your stories what you have gone through. WHEN I get this machine... I intend to never again sleep without it. This whole experience has me pretty freaked out.

P.S... may I also add that I thank God it's open enrollment time at work!!! Going to be leaving this HMO for good... but I still have to put up with them until Jan 1st.

Thank you for your help! -- Shari Thanks
09-29-2013 05:05 PM
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zonk Offline

Advisory Members

Posts: 7,908
Joined: Feb 2012

Machine: A10 AutoSet
Mask Type: Nasal mask
Mask Make & Model: Activa LT
Humidifier: Integrated /ClimateLineAir
CPAP Pressure: 9/13
CPAP Software: ResScan

Other Comments: CPAP since Nov 2010

Sex: Male
Location: Australia

Post: #2
RE: New, scared and looking for advice
(09-29-2013 05:05 PM)shari Wrote:  They made an appt a few weeks later for me to take home a machine, Phillips Respironics Remstar Plus C-Flex on loan for 5 days for a titration study, giving me Swift FX nasal pillows for a mask.
Hi shari, welcome aboard
Machines name can be confusing, just to make sure of the model number, remove water tank and flip machine machine upside down ... model number printed on the label. Model numbers below 460 (60 series) or 450 (50 series) are not data capable machines, just shows how many hours using machine each night, no efficacy data (AHI, leak, etc ..) to helps you and your doctor to see how the therapy is working and to make any adjustment if needed
09-29-2013 05:25 PM
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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: #3
RE: New, scared and looking for advice
(09-29-2013 05:05 PM)shari Wrote:  Hi, my name is Shari... I'm from southern CA. Been having headaches, heart palpitations and extreme tiredness. My less than helpful GP chalked it up to various "things it could be". Lucky for me I happened to see an "on-the-ball" Dr. in urgent care a couple of months back who ordered a sleep study and an echocardiogram. I have a not so great HMO that's big here in socal... and they sent me home with a do-it-yourself sleep study monitor after taking a group class on sleep apnea. They contacted me a couple of weeks later by mail saying I had very severe OSA. Results were basically I stop breathing on average 125.9 times per hour. Average O2 sats were 93%, lowest shows dipping down to 62% 02 sats. They made an appt a few weeks later for me to take home a machine, Phillips Respironics Remstar Plus C-Flex on loan for 5 days for a titration study, giving me Swift FX nasal pillows for a mask. I seemed to tolerate it well, the only negative thing is my lungs and sides seemed to really ache when I took it off it every morning. This HMO that I have loves to drag their feet with everything. They are saying it will be 4-6 weeks before I see my machine. My husband also has sleep apnea... he's had his machine about two years now. It took this same HMO almost A YEAR to finally get him his machine.

Now comes the part where I am scared... I also got the results from my echocardiogram the same week as my titration study. My GP told me I have a heart condition what's called diastolic dysfunction - grade 1. I do not have high blood pressure, so he is telling me it was most likely caused by years of untreated sleep apnea. I asked my GP (and followed up my question via email for a paper trail) if he could possibly please expedite my machine to me, given the fact of this heart condition diagnosis. Nope.... his answer was "unfortunately I have no control over that". Great... so here I sit, night after night... afraid to go to sleep without a machine for fear I won't wake up. To top it off, he's being less than helpful in answering any of my questions re: the DD diagnosis in relation to the sleep apnea... long term prognosis etc. He even said at this point he didn't feel my condition "warranted a referral to a cardiologist". I followed up our appt. with an email saying I REALLY need to see one... so he is finally referring me to one now. Is there anyone else here who has had a diagnosis of diastolic dysfunction due to sleep apnea, and if so... can I hear some of your stories what you have gone through. WHEN I get this machine... I intend to never again sleep without it. This whole experience has me pretty freaked out.

P.S... may I also add that I thank God it's open enrollment time at work!!! Going to be leaving this HMO for good... but I still have to put up with them until Jan 1st.

Thank you for your help! -- Shari Thanks

Welcome Shari! I don't have a heart condition, at least that is what my cardiologist said. I am not 100% confident in what she says but that is a whole other story.

Your experience with the HMO is exactly why I refused to go with an HMO even though my premiums are much higher. I don't do well with multiple appointments and for me to pay to see a primary doc just to pay to get a referral doesn't set too well with me. On top of that, if you have medical conditions or develop medical conditions, the extra money that you and your husband pay going to a primary care doctor first to get a referral to a specialist could add up to enough to pay the extra premiums for a PPO. Also, push for them to continue with the rental and that extra expense might push them to go ahead and make the purchase. It is life threatening to be without it. And, this dragging of the feet is something that is a scary thing. I would also recommend, with your problems and your husband's sleep apnea, selecting an internal med doc as your primary care doc.

Any way, I was told that my plan, which I really love, will not be available next year and I have told my agent that I will NOT do an HMO for any reason! She is trying to push me that way. This year, I have paid the $105 medicare premium and $136 for medicare advantage premium and it has been worth it. However, I also have not had to pay any co-pays for any of my doc visits, even with specialists. This plan also included prescription meds which most plans don't and the premiums are high for those plans (with United Health I think). I have been told that there are no plans with any insurance company comparable to what I have right now so that means I am going to have copays next year which is scary b/c I can't budget b/c I don't know when I will need to see a specialist. So, I am now trying to schedule everything I need to do before the end of the year.

Let us know what you find out when you see the cardiologist and hopefully that doc will push the CPAP machine. Also, you can call your insurance company yourself and ask to speak with a supervisor in approval and find out what the delay is on getting a CPAP/BIPAP or whatever type of machine they say you need.

I thought my numbers were high in my sleep study but they weren't anywhere near yours and I was scared to wait for a machine and was even upset that they didn't give me an auto set when I expressed concerns about the pressure not being high enough all the time to compensate for events so I understand you being scared. Don't be silent; push and push....you can't count on the medical doctors or their staff....you have to take control and be your own advocate.

when my child was in the hospital and was given 10% chance of survival, all the hsp personnel except the surgeon hated me b/c I rode their arse all the time. I made them call me when they had their weekly meetings on the patients (we lived 1200 miles away and my child was in the hsp for 2 years so I was not able to stay there the whole 2 years). I spent a week at the hsp every month until discharge though. I called the nurse each day to find out med changes, etc. and once her main doc was on vacation and his father was taking over the care of his patients until he was back and I caught him prescribing medication that had a critical interaction with another medication my child was taking. Had I not watched, my child could have died many times over. Many more stories I could tell but I won't as my point is this: YOU are your best advocate for your health and welfare and I hope you can take control and do what you have to in order to get your therapy machine!

Keep us updated!
09-29-2013 05:47 PM
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Tez62 Offline

Monitors

Posts: 837
Joined: Feb 2013

Machine: Resmed S9 Autoset
Mask Type: Full face mask
Mask Make & Model: Resmed Mirage Quattro
Humidifier: Resmed
CPAP Pressure: 5-15
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location: Melbourne, Australia

Post: #4
RE: New, scared and looking for advice
Welcome Shari, your story is similar to alot of people that are not getting really good diagnosis, at least you now have a CPAP and you sound like you have a positive attitude towards it which will get you a long way. Please ask any questions anytime and good luck with it, you will see an improvement over time .
09-29-2013 05:49 PM
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bwexler Offline

Advisory Members

Posts: 563
Joined: Mar 2012

Machine: PRS 1 BiPAP autoSV Advanced, with Heated Tube humidifier
Mask Type: Nasal mask
Mask Make & Model: Sleepweaver √Član
Humidifier: Resperonics Heated Tube humidifier
CPAP Pressure: Max pressure 25.0 cm H20, Max
CPAP Software: SleepyHead EncorePro

Other Comments: CMS 50i with Software for SpO2

Sex: Male
Location: San Marcos, CA, USA

Post: #5
RE: New, scared and looking for advice
First most HMOs allow you to change doctors each month just by requesting the new doc.
Now selecting a new doctor that might be better than you have, not always easy.

Next i don't know your financial status, but you could consider buying your own machine from supplier 1 or 2 on the list here. You can look at a list of recommended machines as well. As you know the mask is very personal. Buy your first and get a backup through insurance.

I have atrial fibrillation which i am told can be scary, but i refuse to be intimidated. I don't know anything about diastolic disfunction.

Good luck with your insurance/HMO. Become a very squeaky wheel until someone starts to listen.
I would/have started with the appeal department and work my way up from there.
09-29-2013 05:55 PM
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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: #6
RE: New, scared and looking for advice
(09-29-2013 05:49 PM)Tez62 Wrote:  Welcome Shari, your story is similar to alot of people that are not getting really good diagnosis, at least you now have a CPAP and you sound like you have a positive attitude towards it which will get you a long way. Please ask any questions anytime and good luck with it, you will see an improvement over time .

I don't think she has her machine yet and that is part of the reason she is scared; the other seems to be heart issues. bless her.
09-29-2013 07:21 PM
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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: #7
RE: New, scared and looking for advice
(09-29-2013 05:55 PM)bwexler Wrote:  First most HMOs allow you to change doctors each month just by requesting the new doc.
Now selecting a new doctor that might be better than you have, not always easy.

Next i don't know your financial status, but you could consider buying your own machine from supplier 1 or 2 on the list here. You can look at a list of recommended machines as well. As you know the mask is very personal. Buy your first and get a backup through insurance.

I have atrial fibrillation which i am told can be scary, but i refuse to be intimidated. I don't know anything about diastolic disfunction.

Good luck with your insurance/HMO. Become a very squeaky wheel until someone starts to listen
I would/have started with the appeal department and work my way up from there.

those are good suggestions bwexler. I thought of being a squeaky wheel and call a supervisor in the authorization dept but never thought of the appeals dept.
09-29-2013 07:23 PM
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Sleepster Offline
Wiki Editor
Moderators

Posts: 4,988
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: #8
RE: New, scared and looking for advice
(09-29-2013 05:05 PM)shari Wrote:  They made an appt a few weeks later for me to take home a machine, Phillips Respironics Remstar Plus C-Flex on loan for 5 days for a titration study, giving me Swift FX nasal pillows for a mask. I seemed to tolerate it well, the only negative thing is my lungs and sides seemed to really ache when I took it off it every morning.

Look at Supplier List here ...
http://www.apneaboard.com/forums/Thread-CPAP-Supplier-List

Supplier #2 has gently used Respironics DS550 for $369. I would suggest you buy that along with the humidifier, if you can afford it.

You'll need a prescription from your doctor.

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.
09-29-2013 08:38 PM
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trish6hundred Offline

Advisory Members

Posts: 6,424
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: #9
RE: New, scared and looking for advice
Hi shari,
WELCOME! to the forum.!
Don't be afraid to keep bugging your insurance company to get answers to the questions you have.
Best of luck to you and keep us posted on your progress.

trish6hundred
09-29-2013 08:39 PM
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PsychoMike Offline

Advisory Members

Posts: 549
Joined: Aug 2013

Machine: ResMed S9 AutoSet
Mask Type: Other
Mask Make & Model: Varies with mood, ResMed F10 is my primary
Humidifier: ResMed H5i
CPAP Pressure: 12-17
CPAP Software: SleepyHead

Other Comments: asthma, cyclist upgraditis, just a little crazy (honest :D )

Sex: Male
Location: Alberta, Canada

Post: #10
RE: New, scared and looking for advice
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
(This post was last modified: 09-29-2013 08:46 PM by PsychoMike.)
09-29-2013 08:43 PM
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