"please keep me updated about oximeters "
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repost of Jeff's response to Gerry, a patient who was at his wit's end with the medical system:
"If the doc gave Gerry the diagnosis, the doc did his job. In my opinion, few sleep docs have the time, the patience, or the emotional makeup to be able to show much empathy. Many of them are like cops that way. They love people, but they have a job to do, and it is more important they do their job well than that we like the way they do their job. Once they've done their part in saving one life, they move onto to the next life to save--kind of like firemen. Sleep specialists have a lot of fires to put out these days.
Few people make it through the first few nights with the mask on all night. It takes baby steps. Many wear it for a few hours the first night, wear it for more hours the next night, until eventually they can make it all night with the mask.
The person who delivers equipment is the equipment delivery person, rarely an actual RT. They get beat up on verbally. So I try to be nice to them. And I don't expect them to hold my hand through the whole process. We've got Sleepguide and other communities for that, to do that for each other.
There are ways to make the therapy work. It takes some time and effort, but it can be done in virtually every instance, with a few extremely rare exceptions.
Here is my "tough love" statement: Giving up because we don't feel like we were treated well is counter-productive. I don't care if the pharmacist hands me my pills nicely or throws the bag at me from across the store -- if those pills are going to save my life, I'm going to take them. I don't say to myslef "I'll show them--I just won't take those pills!" No, I take the pills anyway, and live.
That CPAP machine may be the pill that will save Gerry's life if he has 71 events an hour. I understand discouragement. I've been there. I understand depression. Been in that ballpark, too. Sometimes it takes a little tough love for a friend to say: "What? Are you out of your mind? JUST USE THE MACHINE! I love you too much to let you turn your back on the one piece of equipment that may very well give you your life back!"
That would be the kind of tough love I would give Gerry if he was my pal. But I'm not sure tough love always works so well when it comes from strangers. So I guess my post simply is what it is.
If we can precisely define exactly what our problem is using the machine, though, we then are halfway there to finding the solution to each obstacle one at a time until we get the larger problem solved. Sleeping and breathing are worth taking a methodical appoach with, since improving them can have a profound effect on a person's quality of life. CPAP can save lives, but only if it is used.
We have to generate our own success. No doc or delivery person is going to do that for us. Yes, they should be more helpful. But the satisfaction comes from outliving them. :-)
jeff"
"If the doc gave Gerry the diagnosis, the doc did his job. In my opinion, few sleep docs have the time, the patience, or the emotional makeup to be able to show much empathy. Many of them are like cops that way. They love people, but they have a job to do, and it is more important they do their job well than that we like the way they do their job. Once they've done their part in saving one life, they move onto to the next life to save--kind of like firemen. Sleep specialists have a lot of fires to put out these days.
Few people make it through the first few nights with the mask on all night. It takes baby steps. Many wear it for a few hours the first night, wear it for more hours the next night, until eventually they can make it all night with the mask.
The person who delivers equipment is the equipment delivery person, rarely an actual RT. They get beat up on verbally. So I try to be nice to them. And I don't expect them to hold my hand through the whole process. We've got Sleepguide and other communities for that, to do that for each other.
There are ways to make the therapy work. It takes some time and effort, but it can be done in virtually every instance, with a few extremely rare exceptions.
Here is my "tough love" statement: Giving up because we don't feel like we were treated well is counter-productive. I don't care if the pharmacist hands me my pills nicely or throws the bag at me from across the store -- if those pills are going to save my life, I'm going to take them. I don't say to myslef "I'll show them--I just won't take those pills!" No, I take the pills anyway, and live.
That CPAP machine may be the pill that will save Gerry's life if he has 71 events an hour. I understand discouragement. I've been there. I understand depression. Been in that ballpark, too. Sometimes it takes a little tough love for a friend to say: "What? Are you out of your mind? JUST USE THE MACHINE! I love you too much to let you turn your back on the one piece of equipment that may very well give you your life back!"
That would be the kind of tough love I would give Gerry if he was my pal. But I'm not sure tough love always works so well when it comes from strangers. So I guess my post simply is what it is.
If we can precisely define exactly what our problem is using the machine, though, we then are halfway there to finding the solution to each obstacle one at a time until we get the larger problem solved. Sleeping and breathing are worth taking a methodical appoach with, since improving them can have a profound effect on a person's quality of life. CPAP can save lives, but only if it is used.
We have to generate our own success. No doc or delivery person is going to do that for us. Yes, they should be more helpful. But the satisfaction comes from outliving them. :-)
jeff"
Views: 93
Replies to This Discussion
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Permalink Reply by RL on
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Hi Jodi,
I just saw your post. How are you doing since November 2009? Did you get a good mask? Has it been working better for you? Has your DME gotten the software and reader in place to help you with your machine reports? All of these requests are completely reasonable to expect, so if you don't have good results yet, keep working on it. Your experience helps me to realize that I need to be requesting copies of my own results to keep in my own file as a back up to any given medical office. It can seem like a hassle, but no more than paying your time and money for a doctor's visit that has no practical purpose than to bring to light that your case is not being handled well due to paperwork or lack of needed information that should be there. If you need help on how to approach or think about this, the forum her has lots of good info and references.
Jodi Gardiner said:It was so timely that I found this thread today. Last night I did not use my equipment because I was so angry at the health care providers that had let me down this week. On Tuesday, I spent 4 hours in my sleep doctor's office and left empty handed. Ultimately, I did see my doctor for a few moments, because the staff had lost my records. Eventually some of them were found. (No help with my mask, no reading of my machine, and was referred back to my equipment provider.) On Wednesday I spent three hours at my equipment provider's headquarters. They only had one mask in stock, and it was very comfortable, but it smelled like mildew to me. Since using my machine (fourth week now), I have developed bronchitis and a hacking productive cough that has not responded to Antibiotics. I was afraid to take the mask that smelled like mildew. So I asked them to please order a new one and give it to me in the original box. They were annoyed, but agreed to meet with me again next week. They also did not have the equipment to "read" the information in my machine. The doctor never sent the prescription for this piece. It is called RES SCAN. My machine is a RES MED ADAPT SV machine for Complex Sleep Apnea. It is supposed to be monitored regularly to see if the settings need to be adjusted, but so far neither the doctor's office or the equipment supplier has read the machine.
Wit's end indeed!
I really wanted to throw it away yesterday. But, you guys have reminded me that my health is my own responsibility.
My brain function, and heart and lungs should be taken care of by this machine when all is working right. Is this true? Please Help.
Jodi -
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Permalink Reply by Judy on
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Well, whilst ResScan will be a help, I'm fairly sure that the Resmed Adapt SV provides quite a bit of data via the LCD screen. I may have the Clinicians Manual for the Adapt SV so I'll go check about the data availability.
Also - I believe that there is the Adapt SV and the Adapt SV Enhanced w/the Enhanced being the later better model. You might want to check w/your provider whether you have the Adapt SV Enhanced or not. -
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"The Results menu lists clincial results under EFFICACY DATA and USAGE DATA. Usage data is stored 12 months and viewable on the LCD for up to 12 months. Efficacy data is logged for up to 12 months and can be viewed on the LCD for the previous day, week, month and 3 months. More information is available in ResScan."
Except, what the Adapt SV (not the Adapt SV Enhanced) considers Efficacy Data isn't the data we are used to or expect.
The Efficacy Data the Adapt SV reports via the LCD screen is just:
95th percentile Leak in L/min
Average median mask pressure
5th and 95th percentiles Tidal Volume in milliliters
5th and 95th percentiles Respiratory rate (BPM)
5th and 95th percentiles Minute Ventilation in L/min -
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Permalink Reply by White Beard on
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Hi Jodi
I have been on the ResMed VPAP Adapt SV enhanced since May of 08, if your machine is new or has been made since April of 08 then it is more than likely the enhanced version. The big difference is that this machine will put out higher pressure, and it will give you AHI and AI data on its, screen. This machine is capable of showing on its data screen.
Leak Rate ____ L/min
AHI __.__
AI __.__
Avg Pres,______
VT______
Resp. Rate_______
MV________
Used__________( total time)
Usage__________( time used last night)
Mask Fit_________
Now they don't have to have the ResLink to set your MAX and MIN PS, or your EEP that can be done in the clinicians portion on the data screen. That is done from your Doctors prescription. Have they done that and set that up in your machine? The ResLink and Card or the direct link cable can be used to up load and down load data from your machine they can update your software in your machine and the servos using this method. But your script setting can be done using the buttons on the machine in the clinicians portion, also that is where you enable the patient to view all the data that I listed above. I have the Programing Guide, Patient Menu and Clinical Menu I can copy it at E-mail it to you if you want it. Let me know! amd if I can be on any other help to you about this!
As a side note I have not posted in quite a while I had a C5/6 diskectomy and fusion done the end of September and I am in the end stages of a long drawn out divorce, after 35 years of marriage, so to say the least I have been having some things to attend to. But I will try to get back here more often in the future! Thanks Judy for letting me know about this post! -
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Jodi, look on the bottom of your Adapt SV for the Serial Number. The first 4 numbers of the SN will be the year it was manufactured. That should help determine whether you have the Enhanced or not.
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