Hi All,
Finally it comes to conclusion that with long debates yesterday over many important matters dealing that unresolved matters with the sleep doc, sleep tech and researcher and concluded that they I could not trust them any more, so I fired all of them! Everyone of them...ALL.
1) Wrong titrition of perssure after 5 times.
2) Backward thinker insisiting on CPAP instead of Auto PAP.
3) Downloaded data and deleted all my data and denailed and refused to give back the data that they dont know how to retreive back to smart card.
4) No plan for me to move forward except just recommended the cpap.
5) Discorage me to have any form of data cpable to support my on going treatment and checking daily.
6) Most importantly broken the trust of been honest to me.
ALL FIRED! With vey good reasons.......they are all self purpose serving (this broke my trust) , $$$ suckers just want me to sign the cheques (the sleep doc), looking for good data for their research (reserahcer), useless sleep tech previously employed from the zoo (wrongfully titrited).
FIRED! FIRED! FIRED!
Note: I must admitt that I learn more in this forum from all of you for last few months for my treatment. Thank you to you all with my heart.
Mckooi
Fired All Of Them
Mckooi, it is disgraceful that they deleted your data and refused you access to it.
From your posts I can tell that you are an intelligent thinking person wanting to be involved in your own health decisions.
I wish you every good luck in future as you strive to achieve this.
regards
Di
From your posts I can tell that you are an intelligent thinking person wanting to be involved in your own health decisions.
I wish you every good luck in future as you strive to achieve this.
regards
Di
_________________
| Humidifier | ||||
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| Additional Comments: ozzie heated hose. | ||||
...........................................................................
"I'll get by with a little help from my friends" - The Beatles
...........................................................................
"I'll get by with a little help from my friends" - The Beatles
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sleepycarol
- Posts: 2461
- Joined: Thu Aug 30, 2007 7:25 pm
- Location: Show-Me State
- Contact:
I think they feel threatened by anyone that has some knowledge. They are used to those that are complacent and non-complaining -- just go along with whatever the professional tells them.
Good luck.
Good luck.
Start Date: 8/30/2007 Pressure 9 - 15
I am not a doctor or other health care professional. Comments reflect my own personal experiences and opinions.
I am not a doctor or other health care professional. Comments reflect my own personal experiences and opinions.
These whole thing here is about titrition/cpap/auto pap/data capable/data collected and mainly trust and on going plan were not there to install for whole game plan on the patience....this is much concluded that all self-serving-interest. I am not going to waste my time/money/effort/ any more on them. They event voice out kind like threaten me that the data is for clinic purpose only...what kind of liars!
You're getting closer to a solution
mckooi,
I came to this forum in search of information about sleep apnea and CPAP therapy. I found it, but the unexpected consequences were alarming and quite upsetting. For example, I learned that:
- My primary doctor is ignorant about sleep disorders.
- The sleep lab I was sent to is a sham.
- The DME cares less about patients than profits.
- I was too naive and trusting of the healthcare system.
But learning the hard way enabled me to push for better treatment and this week I found it: A board-certified sleep specialist who gave me a new diagnosis (DSPS) and scheduled a new sleep study at a teaching hospital. I hope that your pitiful experience will propel you to an effective solution. Keep up your spirits and good luck, my friend.
I came to this forum in search of information about sleep apnea and CPAP therapy. I found it, but the unexpected consequences were alarming and quite upsetting. For example, I learned that:
- My primary doctor is ignorant about sleep disorders.
- The sleep lab I was sent to is a sham.
- The DME cares less about patients than profits.
- I was too naive and trusting of the healthcare system.
But learning the hard way enabled me to push for better treatment and this week I found it: A board-certified sleep specialist who gave me a new diagnosis (DSPS) and scheduled a new sleep study at a teaching hospital. I hope that your pitiful experience will propel you to an effective solution. Keep up your spirits and good luck, my friend.
Papoose, I hope the best for you in dealing with DSPS. My son has a version of that, non-24 hour sleep/wake syndrome (or medically known by the ridiculous name of hypernychthemeral syndrome). It can be a difficult thing to manage, but can be done. He's doing quite well with it now. I think I researched it to death!
Pam
Pam
_________________
| Machine: DreamStation 2 Auto CPAP Advanced with Humidifier |
| Additional Comments: Oscar Software | APAP: 9-10 |
Innomed Hybrid Mask
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Guest
Hi All,
Thank you for all your support. The sleep apnea treatment is just like a marriage relationship. if you dont take care or have no interest then this is much like living blindly. Then your treatment is as good as crusing at 18cm or 19cm at the highway (be it bumpy or smooth or worst crashing to the wall like NR). I just cant believe what the reseacher said that the smart card data only for clinical use....are they live in the dark or what? One thing that I am sure was that they all not well informed or just played plain ignorant as this is the easier way to get around. I event asked the sleep doc about the algorithm of apap etc and matching of the patency for sleep apnea. The doc was red face (angry) and said "I DONT KNOW".....it was unbelievable. All just plain self-interest-serving. This sleep industry really need to TEST for yearly certification and recertification on all of them yearly in the model of the cpap/apap/bipap (the hardware), Algorithm (the software functions) and the systems overall as a whole. Otherwise, they will just use a plain base ball stick hit all the sleep apnea patients in one go....Unbelieveable. I told the them about Clete Kushida from Stanford Human Sleep Hospital that author of these 2 books...Sleep Apnea Diagnosis, Treatment and Commodities...they look at me like blank. I wanted to mention of the book by Dr. Krakow about the psycology impact etc on sleep apnea etc....thinking they may not be interested any more....very sad to see how blindly they were or worst dont care. They event asked if I have psychology problem in the family.....god....I told them that we all were fine in any close distance relatives and maybe not all have a PHD....I just cant believe that.
I pray each day for them for last few months, I guessed I better stop doing that as I had lost faith in all of them.
Mckooi
Thank you for all your support. The sleep apnea treatment is just like a marriage relationship. if you dont take care or have no interest then this is much like living blindly. Then your treatment is as good as crusing at 18cm or 19cm at the highway (be it bumpy or smooth or worst crashing to the wall like NR). I just cant believe what the reseacher said that the smart card data only for clinical use....are they live in the dark or what? One thing that I am sure was that they all not well informed or just played plain ignorant as this is the easier way to get around. I event asked the sleep doc about the algorithm of apap etc and matching of the patency for sleep apnea. The doc was red face (angry) and said "I DONT KNOW".....it was unbelievable. All just plain self-interest-serving. This sleep industry really need to TEST for yearly certification and recertification on all of them yearly in the model of the cpap/apap/bipap (the hardware), Algorithm (the software functions) and the systems overall as a whole. Otherwise, they will just use a plain base ball stick hit all the sleep apnea patients in one go....Unbelieveable. I told the them about Clete Kushida from Stanford Human Sleep Hospital that author of these 2 books...Sleep Apnea Diagnosis, Treatment and Commodities...they look at me like blank. I wanted to mention of the book by Dr. Krakow about the psycology impact etc on sleep apnea etc....thinking they may not be interested any more....very sad to see how blindly they were or worst dont care. They event asked if I have psychology problem in the family.....god....I told them that we all were fine in any close distance relatives and maybe not all have a PHD....I just cant believe that.
I pray each day for them for last few months, I guessed I better stop doing that as I had lost faith in all of them.
Mckooi
Mckooi, don't stop praying for them! If they are that far gone, they need your prayers all the more.
I am VERY lucky to have a good relationship with a caring sleep doc and a good sleep lab. I count my blessings everyday.
I am VERY lucky to have a good relationship with a caring sleep doc and a good sleep lab. I count my blessings everyday.
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| Mask | ||||
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| Additional Comments: Pressure 16 C-Flex setting at 3; Encore Pro 1.8.49; Encore Analyzer | ||||
Sometimes if people aren't working for you there isn't any better choice than to fire them and start with a clean slate.
I think one of the problems with medical professionals today is that they don't listen to the patient. They are trying to push so many people through the cattle call a day and never really see us as people.
As for the DME's I don't really consider them medical professionals at all. They are in business to make money. Most of the people you have selling equipment and masks to us don't have any medical training. I know for a fact the ones I have dealt with here don't, and none of the people I have had to go to for help even have OSA so they can't even lean on personal experience. The good news is that once in a while you find one that has good customer service skills and will actually try to help and just the TRY is worth something.
I think one of the problems with medical professionals today is that they don't listen to the patient. They are trying to push so many people through the cattle call a day and never really see us as people.
As for the DME's I don't really consider them medical professionals at all. They are in business to make money. Most of the people you have selling equipment and masks to us don't have any medical training. I know for a fact the ones I have dealt with here don't, and none of the people I have had to go to for help even have OSA so they can't even lean on personal experience. The good news is that once in a while you find one that has good customer service skills and will actually try to help and just the TRY is worth something.
_________________
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I'm not anti-social; I'm just not user friendly
Hang in there and keep at it. It can be done WITHOUT the medical/DME LEACHS.
I do NOT advocate going without medical support, but sometimes you just gotta do what you can to get by until you can find the right people.
I started this whole OSA run back in 2002 with an apnea index of 67.5, the apnea/hypopnea index was 116.4, and desaturations occuring to 57%. I got the first part of the PSG done but due to losing my job and not being able to continue my insurence I never went back to the lab to get titrated. I went through homelessness and many other issues in those years and wasn't able to do much until 2006.
After finally winning Disability due to depression, not my OSA, and finding a person that cared enough about my life to push me into doing something about my health because by that time I was in such a bad state I really didnt care about living, she pushed until I bought a used REMstar Pro, non-data, plain jane cpap and humidifer from a co-worker of hers for 200$. He directed me to this website and helped me get things underway. I started with a mask I got from a hospital stay that I used for a few days, they had to throw away anyway, so I garbage picked it.
So I started trying to figure this out, I had my ComfortSelect I garbage picked and a REMstar Pro and then went about figuring out my pressure by FEEL and the guidence of a few people on this board and found a happy pressure of 16. Then in just 1 month I found my nocturna stopped completely and I started feeling better and I was sold. I knew I was taking a risk by GUESSING my pressure so I borrowed 600$ from a friend who saw how I was getting better and bought my current APAP and paid him back 100$ a month for the next 6 months, that left me with 650$ a month to live on for food/rent/bills/everything. I also was able to get a slightly used Swift for free, from a very kind person from this board. (thanks again )
I started using my APAP on Jan 1st of 2007 and finally confermed my pressure of 16 cmH20. Got medicare about a month later, guess late is better then never. Anyway its now been 1 full year and I have been able to nail down most of my OSA related issues and some of the side effects of it.
I now am getting proper support by the medical community but in truth, through this board and the AWESOME people here, I did it all myself without local medical support. There are medical personel that hit the chat/forums here and most are willing to share there experiences with you. THEY ARE NOT practicing medicine in them but if you do your own research and ask the right questions you can get answers.
I know you have extra issues but you can treat at least some of them on your own with simply just hanging in there and plugging away. Don't let anyone stop you NOT even yourself. It may be a long road till you find good local medical and equipment support.
Even if you have to deal with fools, you can fight hard enough and make them do what you need to treat yourself. Knowledge is power. Sooner or later someone will see your not a sheeple* and they will have to deal with you as an equil.
*
Sheep + People = Sheeple
I do NOT advocate going without medical support, but sometimes you just gotta do what you can to get by until you can find the right people.
I started this whole OSA run back in 2002 with an apnea index of 67.5, the apnea/hypopnea index was 116.4, and desaturations occuring to 57%. I got the first part of the PSG done but due to losing my job and not being able to continue my insurence I never went back to the lab to get titrated. I went through homelessness and many other issues in those years and wasn't able to do much until 2006.
After finally winning Disability due to depression, not my OSA, and finding a person that cared enough about my life to push me into doing something about my health because by that time I was in such a bad state I really didnt care about living, she pushed until I bought a used REMstar Pro, non-data, plain jane cpap and humidifer from a co-worker of hers for 200$. He directed me to this website and helped me get things underway. I started with a mask I got from a hospital stay that I used for a few days, they had to throw away anyway, so I garbage picked it.
So I started trying to figure this out, I had my ComfortSelect I garbage picked and a REMstar Pro and then went about figuring out my pressure by FEEL and the guidence of a few people on this board and found a happy pressure of 16. Then in just 1 month I found my nocturna stopped completely and I started feeling better and I was sold. I knew I was taking a risk by GUESSING my pressure so I borrowed 600$ from a friend who saw how I was getting better and bought my current APAP and paid him back 100$ a month for the next 6 months, that left me with 650$ a month to live on for food/rent/bills/everything. I also was able to get a slightly used Swift for free, from a very kind person from this board. (thanks again )
I started using my APAP on Jan 1st of 2007 and finally confermed my pressure of 16 cmH20. Got medicare about a month later, guess late is better then never. Anyway its now been 1 full year and I have been able to nail down most of my OSA related issues and some of the side effects of it.
I now am getting proper support by the medical community but in truth, through this board and the AWESOME people here, I did it all myself without local medical support. There are medical personel that hit the chat/forums here and most are willing to share there experiences with you. THEY ARE NOT practicing medicine in them but if you do your own research and ask the right questions you can get answers.
I know you have extra issues but you can treat at least some of them on your own with simply just hanging in there and plugging away. Don't let anyone stop you NOT even yourself. It may be a long road till you find good local medical and equipment support.
Even if you have to deal with fools, you can fight hard enough and make them do what you need to treat yourself. Knowledge is power. Sooner or later someone will see your not a sheeple* and they will have to deal with you as an equil.
*
Sheep + People = Sheeple
_________________
| Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear |
| Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
| Additional Comments: I swap out the Swift FX as needed with the Mirage Quatro Full Face with Headgear. |
Personally I'm always ready to learn, although I do not always like being taught.
Sir Winston Churchill
I’m not asleep… but that doesn’t mean I’m awake.
- Albert Camus
Sir Winston Churchill
I’m not asleep… but that doesn’t mean I’m awake.
- Albert Camus
I fired my DME 2 months after starting xPAP, because they refused to let me try a NA II because someone else didn't like it! Go figure! I didn't care what that other person thought of it I wanted to try one. So I started ordering from here..Screw the DME!!!!
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HOSEHEADS of America: Striving for that long lost good nights sleep!
HOSEHEADS of America: Striving for that long lost good nights sleep!
My sleep doctor keeps calling me back for another follow up visit. I will not answer the phone or call him back. The last time I went in for a follow up visit, he simply asked me how I was doing. I told him I had seen some improvement but would like to see more. Doctor said come back in three months.
I learned how to adjust my machine through this forum and I am doing much better. I do not need to go back to this doctor. If I have a medical question, I ask the experts on this forum. I get the corrrect answer and it does not cost me 150.00.
Hunter1
I learned how to adjust my machine through this forum and I am doing much better. I do not need to go back to this doctor. If I have a medical question, I ask the experts on this forum. I get the corrrect answer and it does not cost me 150.00.
Hunter1
Thank you for sharing your story, Hades 161.
Things certainly have'nt been easy for you. I am glad you now have the therapy and support you need, and hope the depression is a thing of the past.
Regards
Di
Things certainly have'nt been easy for you. I am glad you now have the therapy and support you need, and hope the depression is a thing of the past.
Regards
Di
_________________
| Humidifier | ||||
| ||||
| Additional Comments: ozzie heated hose. | ||||
...........................................................................
"I'll get by with a little help from my friends" - The Beatles
...........................................................................
"I'll get by with a little help from my friends" - The Beatles
...........................................................................
-
Guest
Hi,
Thank you all to your support particularly this forum of all the great people. I am very touched by all the concerns and greatly appreciate all the helps and sharing of information. After many months and much research thru out the forum, many textbooks and seminars, interactions, and finding was all worth the efforts and best of all was very luck you find this forum and many fantastic people with good hearts. Thank you with all my hearts and I am open welcome all your opinions. Special thank you to Rested_Gal, Nodzy, Wolfman, Snoredog, SWS and so many of YOU that electricfy my intellectual capacity in the OSA fields and treatment. I pray for all of you.
THANK YOU THANK YOU THANK YOU, let's help many more.....
Best Regards,
Mckooi
Thank you all to your support particularly this forum of all the great people. I am very touched by all the concerns and greatly appreciate all the helps and sharing of information. After many months and much research thru out the forum, many textbooks and seminars, interactions, and finding was all worth the efforts and best of all was very luck you find this forum and many fantastic people with good hearts. Thank you with all my hearts and I am open welcome all your opinions. Special thank you to Rested_Gal, Nodzy, Wolfman, Snoredog, SWS and so many of YOU that electricfy my intellectual capacity in the OSA fields and treatment. I pray for all of you.
THANK YOU THANK YOU THANK YOU, let's help many more.....
Best Regards,
Mckooi