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Permalink Reply by sleepycarol on March 3, 2009 at 5:25pm

First tell us the full name of your current cpap. It might be data capable already and those features turned off. If you look at your machine, somewhere the full name should be written on it.

Insurance will only cover cpaps on an average of every 5 years as the are considered durable medical equipment. If you are not opposed to buying your machine outright, I suggest that you purchase a fully data capable apap from an online vendor (www.cpap.com is an excellent choice), along with the appropriate software. Your original script is good for this and you won't need another script as a plain cpap prescription will work. You did get a copy of your script, didn't you?

Then your current machine can be your travel machine, as well as a back-up machine.

If you need more help let us know.

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Permalink Reply by Daniel on March 3, 2009 at 5:46pm

Since the original prescription is more than one year old, any provider other than the original provider is supposed to consider it invalid. It would be like going to a pharmacist you've never met before, and handing him an outdated prescription.

I would suggest that if your current doctor is unwilling to give you direct access to your own health information, you should find another doctor. Make sure you have a copy of your original sleep study (or studies), Your primary care physician can write you a new prescription based on this information with necessarily having to undergo another sleep study.

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Permalink Reply by Erineyes on March 3, 2009 at 6:23pm

Hi, I also got the run around for a number of years trying to get treatment for my sleep apnea. The first time I was told that although I do have sleep apnea I did not "meet the criteria under Medicare guidelines to be warrant a CPAP machine". Apparently I did not stop breathing enough times in the prescribed amount of time. I was given a sleeping pill and sent on my way Since I do not take pills I threw the prescription away. As a result I continued to suffer with headaches, fatigue, high blood pressure, never getting a real sleep. I tried in vain to speak to the insurance company but got no where. Recently I decided to try again, this time I was recommended to a Sleep Clinic in my area by people that I met that had the same problem and were very pleased with the outcome. I had the study again. I was told I have severe sleep apnea as well as a pulse ox that dropped to 85% during the study.I met with the doctor who explained the test results and that I will be getting a CPAP machine. He showed me all the different masks etc available and recommended one for me since I am a mouth breather. I had to go back and test the CPAP and am now waiting for the insurance company to approve it, they told me that that would take about a month. I have to use it for a month and then go back to the Center to find out the results ( it is a data capable CPAP) and if it is effective for me. I cannot say enough about how professional the Center has been, very helpful and genuinely want to help me with this problem. I too live on Long Island. I went to Sleep Solutions 257 Main Street Smithtown. The web site is www.sleepsolutionsny.com. By the way, I did tell the doctor at Sleep Solutions about my past experience so that he was aware that I have had this problem for a long time but did seek help. I hope this helps you, I am very sure that if the CPAP does not remedy my problem the doctors at this Center will continue to seek the help I need since I was told that there are many other options that are available. Good Luck. Oh by the way, I was given a copy of my study results and had them send one to my primary physician so that he is also aware of the findings since he is treating my blood pressure.

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Permalink Reply by Banyon on March 3, 2009 at 7:38pm

Justin Wellen wrote, "If sleep apnea is so deadly, if not correctly treated, why do healthcare professionals make it so tough to monitor? "

Short, brutal answer: Some of them are unenlightened morons!

Would a diabetic get his condition under control if he used a doctor who says, "We don't want you reading your blood glucose levels and then adjusting your insulin and diet." Of course not.

Well sleep apnea is also a deadly disease. Maybe more deadly than diabetes, since it can cause diabetes, heart disease, and stroke, not to mention depression. And like diabetes, patient monitoring and adjusting of the therapy is critical to successful treatment. Of course like diabetes, you need to be educated about sleep apnea and CPAP.

You may want to watch today's clip of "Good Morning America" medical contributor Dr. Marie Savard giving tips on how patients can make sure they get the most out of their doctors' time. ( http://abcnews.go.com/GMA/OnCall/story?id=6993487&page=1 ) A couple of quotes: "Your health radar works better than any doctor's." "With every prescribed treatment you should also be given a goal."

I spent my first two years on CPAP with two doctors and a sleep lab that acted like yours. It is a long tortured story that I won't repeat here, but let me say I finally got a machine with data card and software. It showed me that my treatment was hardly effective at all for the first two years. I went to another sleep lab and was retitrated. The first sleep lab had the pressure very wrong.

After the second titration I used the software to titrate again at home and found a sweet spot where my AHI is consistently under 1.0. Life then started to improve after years of abuse from apnea.

I hold no hope for your current doctor and lab. Get a reference for an enlightened doctor and drop the current joker.

Good luck,

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Permalink Reply by Steve Grant on March 3, 2009 at 9:42pm

The one question to ask is if you have noticed a return of any excessive daytime sleepiness or ?return of nocturia. This should be enought to provoke your Sleep specialist to re-titrate you. As per your machine - there are several manufacturers that have "low-end" equipment that do not come with a smart card. Bottom line, the margins are fatter on these machines. I believe that empowering patients to understand their downloads IMPROVES compliance. Whomever prescribed you your original device should follow-up with you.

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Permalink Reply by Martha G. Lee on March 3, 2009 at 11:28pm

The doctor that performed the sleep test meets with me on a regular basis to read my machine and check my vital signs. He changed the pressure, by lowering it. Six weeks later he put the pressure back to the original setting. I did not feel the lower setting was doing as much good. I have been on the CPAP for over a year now. My next appointment will be in eight months.

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Permalink Reply by PSW on March 4, 2009 at 8:39am

Hi, my C-PAP is the Resmed S7 Lightweight. I know of no data functions/capabilities it may have.
As per obtaining the script, I do not have a copy. I do, however, have a copy of my sleep study, and hope that is enough to obtain a new prescription.

On a side-note, I feel energized from the C-PAP, but no one monitors my therapy. I contact my DME only when I need a new mask or hose, or question a bill. From all of your comments, it appears like I should find a healthcare professional who can review my progress. Otherwise, I got some great ideas from all of your comments, and will put them to good use,


sleepycarol said:

First tell us the full name of your current cpap. It might be data capable already and those features turned off. If you look at your machine, somewhere the full name should be written on it.

Insurance will only cover cpaps on an average of every 5 years as the are considered durable medical equipment. If you are not opposed to buying your machine outright, I suggest that you purchase a fully data capable apap from an online vendor (www.cpap.com is an excellent choice), along with the appropriate software. Your original script is good for this and you won't need another script as a plain cpap prescription will work. You did get a copy of your script, didn't you?

Then your current machine can be your travel machine, as well as a back-up machine.

If you need more help let us know.

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Permalink Reply by sleepycarol on March 4, 2009 at 11:48am

Yes, you are right the Resmed S7 does not provide any useful data. That is unfortunate. I think all machines should have data capability so that users may monitor their therapy.

Since you are having to probably pay out of pocket I would recommend that you try for an apap. If your pressure requirements change, you can titrate yourself using it. If you are up to the challenge you can learn a lot yourself and should be able to monitor your own therapy with the use of the software. That is what I have done. I print out my reports and take them to my PCP when I go for other reasons. This allows copies of my progress to be included in my charts and become part of my records.

Do you have a PCP that would be willing to write you a new script. I have been told that once you have a script it is pretty much good for life from on line vendors. I don't know about local DME's, but in my opinion a new script shouldn't be needed as it is unlike medicine that should be monitored due to side effects and chemical changes that may occur.

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Permalink Reply by Judy on March 4, 2009 at 12:28pm

SleepyCarol and Daniel Levy are both correct. Local DME suppliers do require a new script once a year. The online DME suppliers on the other hand do not. Your script is good for life online. A script for CPAP is good for either a CPAP or an APAP. But you can't buy a CPAP w/an APAP script. Bi-levels, STs, etc. require an entirely different script.

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Permalink Reply by Paul DeLapp on March 19, 2009 at 2:23pm

I believe that the HIPAA Privacy Act states that you and you alone can have access or designate who might have access to your treatment and therapy records. Check with your insurance company or Medicare if eligible or if all else fails consult an attorney.

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Permalink Reply by Judy on March 19, 2009 at 2:52pm

You have too much faith in our government and its laws, PaulDeLapp. HIPAA actually allows a LOT of entities access to your medical records. Some w/access have access only after all personal identifying info has been removed. But many others that protection is NOT required. As a for instance: a local hospital that contracts its radiology department billing to an outside billing service. Your FULL dictated report is sent to the outside billing service.

AND the doctors and medical centers can accumulate information about you they generate but do not put in a medical record you have legal access to. Its still about you and it identifies you but it is protected from your access. And, no, I am NOT talking mental health records, I'm talking your physical health information. For instance, the doctor could include a note that you are a PITA, hypochondriac, suspected drug seeker, etc.

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