02-20-2017, 04:50 PM
setback on my sleep apnea, requet for help
I would like some help from the sleep apnea community after a recent setback with my apnea.
Background
I was diagnosed with sleep apnea over 20 years ago. Have been using a cpap/bipap machine for as long as they have been around. I have had multiple sleep studies. I had uppp about 10 years ago, made me significantly worse (I calculate I required 40% more pressure after the surgery then before). The past 8 years I have been doing relatively well using a PR m series auto bipap 700m, requiring a nap at noon to get through the day, with some headaches that had improved the past couple years. About 2 years ago, I decided to try a PR system one auto bipap, 760p. I used the machine only briefly, because it did not help me as did the 700m, and left me with severe headaches (on the auto setting). I kept it without using it after going back to using the 700m (should have tried to return it to the DME immediately, now out of warranty). I had planned to experiment with different settings with the 760p, but never got around to it. I have relied on auto settings for the past 10 years; the non auto settings, based on my sleep studies setting it at 90% of the IHAP, never worked for me, left me more tired with headaches.
The machines
A month ago, my 700m malfunctioned, as far as I could tell. The data management software showed that it appeared to hover at the highest IHAP limit. I assume the sensor broke when it came in contact with some water. These machines are obsolete, so cannot be repaired. I started using my out of warranty 760p again, but as before, does not help much. I figured out how to use the data management software on the 760p, and it shows that the air pressure it delivers is significantly less than the 700m. I am wondering if it was malfunctioning when I first got the machine as well as now.
The DME
About two weeks ago (after seeing my doctor), I met with a RT at my DME provider. He reviewed my data, but was not clear about a treatment plan, vaguely referred to a couple options that he said he would get back to me on. I am not sure if his being vague was his lack of acumen, or intentional effort to avoid delivering a service that did not make them a sufficient amount of money. After some unreturned phone calls, I composed a non threatening letter detailing my problem and requests (not demands) for treatment, and sent it to the owner of the DME and a copy to my physician. (I will describe my requests below).
The Doctors
My current doctor is a pulmonologist. I requested a new sleep study last Friday, told she was out of the office, and would not review my request until her return mid this week. However, today (a holiday) I got a call from the doctor’s office stating “The doctor does not think you need a new sleep study, and is not a sleep specialist, is only a pulmonologist. Our sleep specialist is not available to see you, is overbooked, we would like to refer you to Dr. ….. (in another office).” I asked if they received my letter (copy of the one I sent to the DME) and they said, no, the doctor is not in the office till mid this week. If the doctor was not in to receive the letter, how could she have seen the request for the sleep study? I think that perhaps the office manager saw the letter, and someone in the office decided I was a potential threat, and does not want to continue to provide me with services, i.e., my physician’s office decided to use deception to avoid treating a complicated case, because I sent a letter they were scared.
My requests (made in the letter)
1. To rent from you a system one auto bipap machine, 760p model, that we believe is functioning correctly, to compare to my current 760p, to review how it helps with my sleep, as well review the data software that I have at home to determine the pressures it delivers during the night. If my 760p is found to be broken, I am told by Respironics that I would need your respiratory therapist to send the machine to be fixed out of warranty (that I would pay for). If you don’t have a working 760p to rent to me, then we should immediately send my 760p to respironics for an evaluation. [The DME called me today, agreed to this request]
2. To rent from you an m series (700m) auto bipap, if you have one, that you think is working properly, to see if that was delivering an algorithm that was more effective in treating my sleep apnea, and compare the results in my sleep and the data management software that indicates it is working similarly to the way my broken 700m was when it was working.
3. To rent from you some current model auto bipap machines that you have available to see if we can find a machine that delivers an algorithm that improves my sleep to prior levels.
My Questions (for the forum)
1. Is my asking for a current sleep study unwarranted, given that I had one last done two years ago? I am wondering if the machines are not actually malfunctioning, but there has been a change in my sleep pattern.
2. What kind of sleep specialist should I be seeing? I thought the pulmonologist was a sleep specialist, but apparently not.
3. Is it realistic (given the costs to the DME) for me to make the request in #3 (to find a machine that works).
4. Other thoughts?
Background
I was diagnosed with sleep apnea over 20 years ago. Have been using a cpap/bipap machine for as long as they have been around. I have had multiple sleep studies. I had uppp about 10 years ago, made me significantly worse (I calculate I required 40% more pressure after the surgery then before). The past 8 years I have been doing relatively well using a PR m series auto bipap 700m, requiring a nap at noon to get through the day, with some headaches that had improved the past couple years. About 2 years ago, I decided to try a PR system one auto bipap, 760p. I used the machine only briefly, because it did not help me as did the 700m, and left me with severe headaches (on the auto setting). I kept it without using it after going back to using the 700m (should have tried to return it to the DME immediately, now out of warranty). I had planned to experiment with different settings with the 760p, but never got around to it. I have relied on auto settings for the past 10 years; the non auto settings, based on my sleep studies setting it at 90% of the IHAP, never worked for me, left me more tired with headaches.
The machines
A month ago, my 700m malfunctioned, as far as I could tell. The data management software showed that it appeared to hover at the highest IHAP limit. I assume the sensor broke when it came in contact with some water. These machines are obsolete, so cannot be repaired. I started using my out of warranty 760p again, but as before, does not help much. I figured out how to use the data management software on the 760p, and it shows that the air pressure it delivers is significantly less than the 700m. I am wondering if it was malfunctioning when I first got the machine as well as now.
The DME
About two weeks ago (after seeing my doctor), I met with a RT at my DME provider. He reviewed my data, but was not clear about a treatment plan, vaguely referred to a couple options that he said he would get back to me on. I am not sure if his being vague was his lack of acumen, or intentional effort to avoid delivering a service that did not make them a sufficient amount of money. After some unreturned phone calls, I composed a non threatening letter detailing my problem and requests (not demands) for treatment, and sent it to the owner of the DME and a copy to my physician. (I will describe my requests below).
The Doctors
My current doctor is a pulmonologist. I requested a new sleep study last Friday, told she was out of the office, and would not review my request until her return mid this week. However, today (a holiday) I got a call from the doctor’s office stating “The doctor does not think you need a new sleep study, and is not a sleep specialist, is only a pulmonologist. Our sleep specialist is not available to see you, is overbooked, we would like to refer you to Dr. ….. (in another office).” I asked if they received my letter (copy of the one I sent to the DME) and they said, no, the doctor is not in the office till mid this week. If the doctor was not in to receive the letter, how could she have seen the request for the sleep study? I think that perhaps the office manager saw the letter, and someone in the office decided I was a potential threat, and does not want to continue to provide me with services, i.e., my physician’s office decided to use deception to avoid treating a complicated case, because I sent a letter they were scared.
My requests (made in the letter)
1. To rent from you a system one auto bipap machine, 760p model, that we believe is functioning correctly, to compare to my current 760p, to review how it helps with my sleep, as well review the data software that I have at home to determine the pressures it delivers during the night. If my 760p is found to be broken, I am told by Respironics that I would need your respiratory therapist to send the machine to be fixed out of warranty (that I would pay for). If you don’t have a working 760p to rent to me, then we should immediately send my 760p to respironics for an evaluation. [The DME called me today, agreed to this request]
2. To rent from you an m series (700m) auto bipap, if you have one, that you think is working properly, to see if that was delivering an algorithm that was more effective in treating my sleep apnea, and compare the results in my sleep and the data management software that indicates it is working similarly to the way my broken 700m was when it was working.
3. To rent from you some current model auto bipap machines that you have available to see if we can find a machine that delivers an algorithm that improves my sleep to prior levels.
My Questions (for the forum)
1. Is my asking for a current sleep study unwarranted, given that I had one last done two years ago? I am wondering if the machines are not actually malfunctioning, but there has been a change in my sleep pattern.
2. What kind of sleep specialist should I be seeing? I thought the pulmonologist was a sleep specialist, but apparently not.
3. Is it realistic (given the costs to the DME) for me to make the request in #3 (to find a machine that works).
4. Other thoughts?
