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CPAP Concerns
#1
Forum members new or old ,

Wanted to share my recent experience:

I have been using a CPAP Machine for almost 20 years now.  My first machine lasted 19 of those 20 years.   My plead to the Medical staff when treating CPAP is listen to the CPAP users.  When my CPAP died the first few days trying to fall asleep was like someone holding a pillow over you face as I felt like I could not get enough air.  Since I have been on  CPAP machine for ever and used it EVERY but maybe a hand full if I had a very bad cold and could not breath through my nose is the only time I did not use it.  So I needed to get back on a CPAP again quickly so my doctor referred me to a Sleep clinic but that is when it all slowed down.  It took me a couple of weeks to get in then  a home study, then they requested I get a titration study done and again they wanted me to wait weeks again to get in for this.   I was mildly upset that the Dr. that read my home study had indicated the reason for my In Clinic study was due to my AHI =74 , O2 dropped to 65% and I had over 240 minutes <88% O2 sat.   I did not have a problem getting the test done I just need to not have to wait for ever to get everything done.   I had been communicated with my Drs. through MY CHART which is another story for another day.  I was not seeming to be getting any where so I contacted my GP (regular doctor) to see she could help me get thing expedited.   Did not get very far there either, So I had to explain that I needed help now .... not tomorrow... or not months from now, as  my normal day consisted of getting out of the house at 5am drive 40 mins to work, work until noon, sleep one hour at my desk, leave work at 3pm , hope I do not fall asleep driving home, go straight to bed and sleep 2 more hours, eat dinner, stay up 2 hours and fall back asleep.  Sleep 8-9 hours... and wake up exhausted and start that whole cycle again .    I was able to convince the Dr. to help me get in at any of the 6 sleep clinics near me as I needed to get a CPAP now.   I was able to get in two days later thinking great now I will be able to get my CPAP after that .    Nope we wrote the script for you but you now have to wait for your DME to order you a CPAP and then schedule you an appt. in the next 10-14 days.

ANY DOCTORS reading this please understand sometimes we need your assistance to fix this type of serious problem and we need to get this expedited .   One of the Drs. advice to me was make sure you do not drive as you could cause a serious accident.    YES I KNOW and I have used up a week of my vacation but I do not get 6 weeks vacation so I need to get a CPAP NOW.

I am telling my story in the hopes that the DRS. need to work with us to cut through the delays or come up with a Loaner CPAP Autoset machine to get the person some relief until all the testing can be completed as the normal time for someone with my level severity can easily take 2 months start to finish....   way too long.    

To all the forum if you need a new machine YOU NEED TO BE PROACTIVE and do not take NO for an answer keep reaching out and hopefully you will get through to someone that can help you and to the Insurance and Sleep Dr. please read this and get involved to change the status quo. and work with us to cut out any excess delays for proper treatment.      Thank You  C2workout
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#2
(05-17-2017, 06:43 PM)c2workout Wrote: Forum members new or old ,

Wanted to share my recent experience:

I have been using a CPAP Machine for almost 20 years now.  My first machine lasted 19 of those 20 years.   My plead to the Medical staff when treating CPAP is listen to the CPAP users.  When my CPAP died the first few days trying to fall asleep was like someone holding a pillow over you face as I felt like I could not get enough air.  Since I have been on  CPAP machine for ever and used it EVERY but maybe a hand full if I had a very bad cold and could not breath through my nose is the only time I did not use it.  So I needed to get back on a CPAP again quickly so my doctor referred me to a Sleep clinic but that is when it all slowed down.  It took me a couple of weeks to get in then  a home study, then they requested I get a titration study done and again they wanted me to wait weeks again to get in for this.   I was mildly upset that the Dr. that read my home study had indicated the reason for my In Clinic study was due to my AHI =74 , O2 dropped to 65% and I had over 240 minutes <88% O2 sat.   I did not have a problem getting the test done I just need to not have to wait for ever to get everything done.   I had been communicated with my Drs. through MY CHART which is another story for another day.  I was not seeming to be getting any where so I contacted my GP (regular doctor) to see she could help me get thing expedited.   Did not get very far there either, So I had to explain that I needed help now .... not tomorrow... or not months from now, as  my normal day consisted of getting out of the house at 5am drive 40 mins to work, work until noon, sleep one hour at my desk, leave work at 3pm , hope I do not fall asleep driving home, go straight to bed and sleep 2 more hours, eat dinner, stay up 2 hours and fall back asleep.  Sleep 8-9 hours... and wake up exhausted and start that whole cycle again .    I was able to convince the Dr. to help me get in at any of the 6 sleep clinics near me as I needed to get a CPAP now.   I was able to get in two days later thinking great now I will be able to get my CPAP after that .    Nope we wrote the script for you but you now have to wait for your DME to order you a CPAP and then schedule you an appt. in the next 10-14 days.

ANY DOCTORS reading this please understand sometimes we need your assistance to fix this type of serious problem and we need to get this expedited .   One of the Drs. advice to me was make sure you do not drive as you could cause a serious accident.    YES I KNOW and I have used up a week of my vacation but I do not get 6 weeks vacation so I need to get a CPAP NOW.

I am telling my story in the hopes that the DRS. need to work with us to cut through the delays or come up with a Loaner CPAP Autoset machine to get the person some relief until all the testing can be completed as the normal time for someone with my level severity can easily take 2 months start to finish....   way too long.    

To all the forum if you need a new machine YOU NEED TO BE PROACTIVE and do not take NO for an answer keep reaching out and hopefully you will get through to someone that can help you and to the Insurance and Sleep Dr. please read this and get involved to change the status quo. and work with us to cut out any excess delays for proper treatment.      Thank You  C2workout

sleep clinics are to be avoided if at all possible

do an in home test
get a machine
self titrate it 

get a doctor not associated with a DME or a sleep clinic
the ones that are financially linked are biased and only care about compliance
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#3
Unfortunately we hear this type of thing a lot.

For what it's worth, when I woke up from my initial study the technician told me my AHI was >60 and handed me a Resmed Autoset there and then, with a follow-up appointment for one week later.

I agree entirely with you that quite often doctors need to get their act together, and we as patients have to push them along.
DeepBreathing
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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.
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#4
Oh, my goodness... Those stats are frightening. I had a three month wait to see the sleep doc, and then another 4 week wait for the in-lab sleep study, and then another two week wait to get my machine. I had a previous apnea dx and had been using oral appliances (they fell apart completely) for three years, but man, I thought I would lose my mind during those 4 1/2 months before getting CPAP. I couldn't agree more with all that you said re: time it takes to get help/treatment. My family endured my many rants during my wait period about this subject. There were days I would just break down in tears because I couldn't function at all. I intend to see someone at my hospital, FWIW, to describe my experience and how the situation/protocol must change.
--Leslie

"It will all be fine in the end. If it isn't fine, it isn't the end."
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#5
I have a neighbor who got a machine a few years ago and could not tolerate the therapy. He told me a week or so ago it is gathering dust in the closet. Shuld I ask if he wants to sell it or donate it?  Not sure if that is legal but he is an attorney so I can pose the concern.
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#6
Makes a real good argument to come up with a seconary/backup CPAP. Used is OK, heck, if the price is right, a high-hour but functioning unit fills the role. Even a straight non-recording brick of a CPAP set at 90-95% pressure will work in this role.

Secondwind CPAP (supplier Numero Dos) may be a good source; craigslist may be too (depending on where you live).

Having a backup as soon as you can is ALWAYS prudent. (Note: you don't see many single engine airliners anymore)

OMMOHY
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#7
(05-18-2017, 07:17 AM)VeeAyBoy Wrote: I have a neighbor who got a machine a few years ago and could not tolerate the therapy. He told me a week or so ago it is gathering dust in the closet. Shuld I ask if he wants to sell it or donate it?  Not sure if that is legal but he is an attorney so I can pose the concern.


The best bet is to try and talk your neighbor into revisiting the use of cpap therapy.  

Other than that, there are many places he can call and donate a machine.  

Here on Apnea Board, for legal reasons, it would not be allowed to sell, donate, or trade any item that requires a prescription.
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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.




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#8
(05-18-2017, 07:17 AM)VeeAyBoy Wrote: I have a neighbor who got a machine a few years ago and could not tolerate the therapy. He told me a week or so ago it is gathering dust in the closet. Shuld I ask if he wants to sell it or donate it?  Not sure if that is legal but he is an attorney so I can pose the concern.

t would be good if he would use it, but if he refuses, do you already have a backup machine?  See above....


OMMOHY
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#9
I guess I am lucky. I did at home sleep test two weeksago Monday.  Returned Tuesday was told Tuesday had mild apnea. Friday was back and sent home with machine to tritation. That went to the following Friday.  The next Tuesday got my own airsense a10. Sounds like this was quick. Thanks to Kaiser.
Thanks
GARY
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#10
(05-18-2017, 07:48 AM)OpalRose Wrote:
(05-18-2017, 07:17 AM)VeeAyBoy Wrote: I have a neighbor who got a machine a few years ago and could not tolerate the therapy. He told me a week or so ago it is gathering dust in the closet. Shuld I ask if he wants to sell it or donate it?  Not sure if that is legal but he is an attorney so I can pose the concern.


The best bet is to try and talk your neighbor into revisiting the use of cpap therapy.  

Other than that, there are many places he can call and donate a machine.  

Here on Apnea Board, for legal reasons, it would not be allowed to sell, donate, or trade any item that requires a prescription.
He apparently opted for surgical enlargement of the airway by tissue removal and adenoids/tonsils removal. It was lucky for him.  The preop workup by the surgeon found a tumor on his pituitary. He had that removed also about 4 months later at Johns Hopkins.  After both surgeries the obstructive apnea was gone and has not returned.  He also lost 40 pounds as a result of the process. Smile .  I think he will probably donate it.  Any place focus on servicemen?
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