Post Reply 
Disappointed with Doc, am I asking too much??
Author Message
murf2499 Offline

Members

Posts: 6
Joined: Sep 2012

Machine: Resmed S9 Elite
Mask Type: Nasal pillows
Mask Make & Model:
Humidifier: Resmed H5i
CPAP Pressure: 12
CPAP Software: Not using software

Other Comments:

Sex: Male
Location: Albany NY

Post: #1
Disappointed with Doc, am I asking too much??
My journey with sleep apnia started back in April with a referal for a sleep study.

I called the recomended sleep lab in upstate NY to schedule my study. The lab is owned by the local pulminary physicians group, the physician offices and the sleep lab are right next to each other in the same office building. When I called I was told I first need a consultation with a PA, which they are booking 6 weeks out.

In the beginning of June I met with a very nice, professional PA. He asked me a series of questions, told me what to expect from the study, then recomended based on his assesment I get a study. They were currently booking sleep studies 8 weeks out. I booked my study for the first available appointment, mid August. Althow they have a cancellation list I never heard from them.

The night of my study all went as well as can be expected. The sleep tech was professional and answered all my questions. I had not heard back from the lab after 9 days, so I called to see if my results were ready. I was told I had severe sleep apnia, AHI of 83 and saturations into the low 70's, longest episode lasted 51 seconds. The first opportunity for a titration study would be November. I asked to be treated with auto pap until the titration study could be completed, as I have really been miserable and concerned for my safety. First I was told my insurance would not cover that, to which I answered thats fine I will pay out of pocket. It was then made clear they do not believe in this approach and that is not an option.

A few hours later I was called and told someone cancelled and there was on opening for Thursday August 30th. Of course I jumped at the opportunity! The study went great, again my sleep tech was great, answering all of my questions and making me feel at ease. At 3AM I woke to use the bathroom. I asked how I was doing and was told the beginning of the night was rough, but I was at a pressure of 12 now and doing great. The tech then woke me at 6AM to end the study. When I say woke me, I mean actually had to shake my shoulder....I havent slept so good in years!! I felt great. When I was leaving the study I was told from 3AM until they woke me up I remained at a pressure of 12 with no snoring or events!! Sounds to me like 12 is the magic number. Not so fast, it will take 7-10 days to read the study, I would get a call with the results. The first thing I thought was, oh no I'm going to feel like crap again tomorrow........

That afternoon at 1:00 PM I called the office to see if I could speak with one of the physicians or PA's. Now, I'm certainly not expecting anyone to drop what there doing, but a call back would be great. The receptionist sharply stated we don't do that! I asked do what, allow your patients to speak with the physicians, I've been through $2,500 worth of testing an have not even met a physician yet?? After a drawn out arguement she finally agreed to page the PA who I origanally met with. The PA promply called me back and was wonderful. I expressed to him how great I felt and was there anything we could do to get the titration result sooner....It's been a long road. He seemed confident he could get me a script Tuesday morning, after the labor day weekend. Great, the end is in sight!!

Tuesday Morning about 10AM, I call the lab to relay the good news I received from the PA. The lab is owned and operated by the Physicain group, so I assumed there communication would be good. I was told clearly that the PA was wrong, he had no right to tell me they would move faster, it will be a week to 10 days, maybe a little longer because of the long holiday weekend. "We have our procedures!"

Wednesday morning I check in with the lab, no change. That afternoon I need to drive 3 hours for work, about half way there I fell asleep at the wheel for a brief second. I don't know what woke me, but when I woke all I saw was the brake lights of a tractor trailer in front of me. I slammed on the brakes and stopped with 10 feet to spare. I'm sure if I slept an additional half of second I'd be in the hospital or dead right now!! I pulled on the side of the road and actually cried. A grown 46 year old man crying on the side of the road thinking my doctor must not give a XXXX about his patients. I called my wife, got some coffee and got on with my day.

Thursday I called again, " The file if in the doctors office, he needs to dictate the results, maybe tomorrow.

Friday my wife calls as I am now driving home from my business trip and she is concerned for my safety. My wife tells them the story of my near miss on Wednesday, explains that I drive extensivly for my job and something needs to be done. She is then told the file is on the doctors desk, he knows your husband has called several times, maybe he will get to it Monday but more likely Tuesday. The fact that one of their patients who is diagnosed with severe OSA but left untreated almost smashed into a tractor trailer has no impact on them. I'd hate to be their liability insurance provider!!

Now, it's Saturday morning and I wondering, am I crazy? Am I asking too much? They have their procedures and I need to understand that, but I just want t feel better!!

Thanks for listening!!
09-08-2012 08:32 AM
Find all posts by this user Post Reply Quote this message in a reply

Donate to Apnea Board
PaulaO2 Offline
Wiki Editor
Moderators

Posts: 8,057
Joined: Feb 2012

Machine: S9 Autoset
Mask Type: Full face mask
Mask Make & Model: F&P Simplus
Humidifier: H5i
CPAP Pressure: 14-20
CPAP Software: SleepyHead

Other Comments: Ehlers-Danlos Syndrome, Hypermobility Type; chronic sarcasm

Sex: Undisclosed
Location: western NC, USA

Post: #2
RE: Disappointed with Doc, am I asking too much??
On the one hand, it would seem this clinic is extremely busy. A week to ten days to get a report to the doc then have the doc respond seems reasonable, given the amount of patients they must be seeing. Then add in that your sleep apnea did not hit all at once and that you have been successfully living this for who knows how long, I can see how they are not rushing your file through the process.

On the other hand, there is a thing called 'taking care of the patient' and it would seem this office is unable to do that. They are overworked. Just the fact you saw a PA (a physician's assistant, right?) versus an MD shows that they are so busy, you can't even see the doc until after the second sleep test. It is cheaper to hire several PAs than to hire a second or third qualified MD.

On the third hand (yes, I'm an alien), they are making their workload worse by not doing split studies. On your first night, other sleep labs would have woken you, when it is obvious you have sleep apnea, and hooked you up to a CPAP and done the titration there. It is very common. But, while making their workload worse, they are also getting paid twice, which they may see as a bonus bigger than taking care of the patient.

If this clinic also sells CPAPs, don't buy from them. Ask for the script, both sleep study reports, and go to another supplier.

PaulaO2
Apnea Board Moderator
www.ApneaBoard.com


Breathe deeply and count to zen.

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.
09-08-2012 09:23 AM
Find all posts by this user Post Reply Quote this message in a reply
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: #3
RE: Disappointed with Doc, am I asking too much??
(09-08-2012 08:32 AM)murf2499 Wrote:  He seemed confident he could get me a script Tuesday morning, after the labor day weekend. Great, the end is in sight!!

Tuesday Morning about 10AM, I call the lab to relay the good news I received from the PA. The lab is owned and operated by the Physicain group, so I assumed there communication would be good. I was told clearly that the PA was wrong, he had no right to tell me they would move faster, it will be a week to 10 days, maybe a little longer because of the long holiday weekend. "We have our procedures!"

Call that PA and tell him you want that prescription. Call your insurance company and tell them you want to purchase your machine from a different source.

Do not, under any circumstances, get a machine that is not fully data capable. Anyone who would provide you with one of those machines, what we call a brick, is operating under a model that's been obsolete for the last 5 - 10 years. For jst a few dollars more we can now buy machines that record the data as we sleep. Data that we can use to evaluate the effectiveness of our therapy. Without it we are receiving CPAP therapy in the dark. A really stooopid idea.

Do not, under any circumstances, buy a machine that is not fully data capable.

Hopefully you can get a prescription for a fully data capable APAP such as the ResMed S9 Autoset. If not, a fully data-capable CPAP. Look at our Supplier List. Supplier #1 has Item #DS250S-AH250S on sale for $269.

You have a right to the results of that sleep study. You should be able to take those results to any doctor and get a prescription. I would take a day off from work and spend it at that clinic demanding to see the person in charge.

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.
(This post was last modified: 09-08-2012 10:35 AM by Sleepster.)
09-08-2012 10:28 AM
Find all posts by this user Post Reply Quote this message in a reply

Donate to Apnea Board
Podd Offline

Preferred Members

Posts: 41
Joined: Aug 2012

Machine: Resmed S9 Escape
Mask Type: Full face mask
Mask Make & Model:
Humidifier: Specific to Resmed S9
CPAP Pressure: Reduced to 13.5cmh2o
CPAP Software: ResScan

Other Comments: Glad i'm mad, it stopped me from going insane?

Sex: Male
Location: Abingdon-on-Thames (UK)

Post: #4
Gross RE: Disappointed with Doc, am I asking too much??
Hi murf2499,
I think your treatment by the sleep lab is really poor but I have to ask 'Why are you still driving?'Unsure, from your post you were told you have severe sleep apnoea, you also had a 'Near Miss' due to you momentarily falling asleep, these are very clear indications (To me anyway) that you are putting yourself and others at risk.
I dread to think how your insurance would deal with it if you actually had an accident.
I know it's harsh but the onus is on you to actually stop driving, at least until you have treatment and no longer run the risk of falling asleep behind the wheel.
The last thing the singer Bob Marley said to his son on his deathbed was 'Money can't buy life', bit of a no brainer really isn't it.
Probably not what you want to hear but I think you will agree not driving is the right thing to do.Rolleyes
Why not take a day off and have a 'Sit-In' in the Clinic and not move until you are sorted out, just pretend to be asleep after all they said you have severe sleep apnoea so they can't blame you can they??Coffee
Stay safe, Podd
09-08-2012 11:34 AM
Find all posts by this user Post Reply Quote this message in a reply
jdireton Offline

Preferred Members-2

Posts: 149
Joined: Feb 2012

Machine: Resmed S9 Elite
Mask Type: Nasal mask
Mask Make & Model: Resmed Mirage FX
Humidifier: Resmed H5i
CPAP Pressure: 12
CPAP Software: ResScan

Other Comments: ClimateLine Hose

Sex: Male
Location: Florida

Post: #5
RE: Disappointed with Doc, am I asking too much??
Murf,

Your delays seem excessive, but this seems to be an area by area thing. From referal to having a machine for me was three weeks (over Thanksgiving) including a full night study and a full night titration. I can't imagine that taking months and feel your pain. You've felt the benefit of treatment, and now it's being denied!

No advise here, others have advised you well, including taking an inventory of your suitability to drive (won't preach).

Keep making the phone calls. Do you think if you p*** off the receptionist it will slow things down? Not likely. You seem happy with everyone but the receptionist.

Stay strong! Keep posting us on your progress, even if you're just venting. We're here!
09-08-2012 12:26 PM
Find all posts by this user Post Reply Quote this message in a reply

Donate to Apnea Board
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: #6
RE: Disappointed with Doc, am I asking too much??
Hi murf2499, I'm sorry to hear that you are having such bad treatment from your sleep clinic. Just keep calling them and your insurance company 'till you get answers. Hopefully, you get results soon.

trish6hundred
09-08-2012 01:08 PM
Find all posts by this user Post Reply Quote this message in a reply
murf2499 Offline

Members

Posts: 6
Joined: Sep 2012

Machine: Resmed S9 Elite
Mask Type: Nasal pillows
Mask Make & Model:
Humidifier: Resmed H5i
CPAP Pressure: 12
CPAP Software: Not using software

Other Comments:

Sex: Male
Location: Albany NY

Post: #7
RE: Disappointed with Doc, am I asking too much??
UPDATE: Yesterday morning I finally received my script from the physician!! As I mentioned in my initial post it sounded like 12 would be the magic number and 2 1/2 weeks later, the script is 12! Wow!

But that is all in the past and last night was my first night of therapy. At about 8 PM I went up stairs to check out my mask's. I had the Mirage FX that I used during my titration study and was allowed to bring home, and my Resmed nasal pillow which were supplied by my DME supplier. Tried on the pillows and decided to lay on my side to see if there were any leaks........My wife woke me at 11PM to take off my shoes and get under the covers, I just slept 3 hours full dressed with the lights on. This was a good sign! I went to bed and slept 9.3 hours, waking only once to use the bathroom. My Resmed S9 Elite told me my AHI was 5.3 for the night with no mask leaks.

The AHI of 5.3 seemed a little higher than I hoped, but a world of differance from the 83 I scores on my initial study. Felt great all day, driving round trip to one of my accounts, 3 hours each way. Home now, and still feeling great!! In my mind the 5.3 is going to improve as I feel better, become more active and loose some weight. I really feel like today is the first day of the rest of my life!!
09-12-2012 05:11 PM
Find all posts by this user Post Reply Quote this message in a reply

Donate to Apnea Board
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: #8
RE: Disappointed with Doc, am I asking too much??
(09-12-2012 05:11 PM)murf2499 Wrote:  In my mind the 5.3 is going to improve as I feel better, become more active and loose some weight. I really feel like today is the first day of the rest of my life!!
Absolutely right. Congrats
09-12-2012 05:22 PM
Find all posts by this user Post Reply Quote this message in a reply
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: Disappointed with Doc, am I asking too much??
Hi murf2499, THAT'S GREAT, I'm glad to hear you FINALLY got your machine, CONGRATULATIONS.! You still may have a bad night ever so often but at least you are finally on your CPAP journey. Do keep us posted, best of luck.

trish6hundred
09-12-2012 05:51 PM
Find all posts by this user Post Reply Quote this message in a reply

Donate to Apnea Board
PaulaO2 Offline
Wiki Editor
Moderators

Posts: 8,057
Joined: Feb 2012

Machine: S9 Autoset
Mask Type: Full face mask
Mask Make & Model: F&P Simplus
Humidifier: H5i
CPAP Pressure: 14-20
CPAP Software: SleepyHead

Other Comments: Ehlers-Danlos Syndrome, Hypermobility Type; chronic sarcasm

Sex: Undisclosed
Location: western NC, USA

Post: #10
RE: Disappointed with Doc, am I asking too much??
It could take a few nights for everything to settle. Never go by just one night's data as being the way things are. You'll need about 2 weeks or more before any trends start to show.

What machine do you have?

PaulaO2
Apnea Board Moderator
www.ApneaBoard.com


Breathe deeply and count to zen.

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.
09-12-2012 06:08 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
  Disappointed with rising AHI SpeedyD 8 888 02-05-2016 05:48 AM
Last Post: SpeedyD
  Disappointed with my new F&P Icon Premo non-auto Hanrahan 9 1,397 09-20-2015 04:15 PM
Last Post: vsheline
  Disappointed Clementine 34 4,264 07-31-2014 12:16 PM
Last Post: robysue

Forum Jump:

Who's Online (Complete List)