Good Results, at last !!!

[PurpleSwan3033]

I apologize for this lengthy posting but I want to try and help someone avoid the hell I went through. It took me about 4 and one-half months to notice significant results. I went through 4 masks and ended up having to change from a cpap machine to an apap machine before my sleep improved. Prior to that, I was waking about every 90 minutes, or so, to visit the restroom and having trouble getting back to sleep. Most of the time, I had to stay up for a while. After I switched to the apap machine my sleep finally improved. I am only waking up once a night and sleeping about 6 hours, total. My therapy was complicated by the fact that I had "SERIOUS ISSUES" with my DME. I had a disagreement with some hot shot guy in light green colored hospital garbs over mask issues. This "so-called therapist" kept bringing me full face masks that did not work. I kept telling him I felt a nasal mask would work for me because my neighbor had loaned me one for a couple of nights that I slept well with but kept ignoring me. I think he resented it. I got a pressure sore on the bridge of my nose from those full face masks and it was worsening. When I finally insisted on a nasal mask, Mr. light green garbs argued with me, stormed out of my house and stopped answering my telephone calls. I complained to several so-called managers at his company and the end results was, I concluded, that they were PUNISHING me by ignoring my suffering, my complaints and my phone calls. I suffered, needlessly, over 3 months, waking up every 90 minutes because these so-called professionals conspired to PUNISH me! I filed official complaints with my doctor, my insurance company and with Medicare. Then the DME responded to my problems. They assigned a "legitimate" respiratory therapist from another office to work with me. He changed me to a nasal mask. It worked! He gave me an auto titrating machine (apap) to try for a week. It worked! Using that apap machine, he was the first person from his company to "actually read the data card" (from that machine) to study the stats that documented what was going on when I was asleep. I had complained many, many, many times that someone should do this but I was "continuously ignored". It seems it was not possible for them to read the card in my first machine, the Respironics RemStar Pro M-Series. However, the apap, a ResMed Autoset Vantage, was readable. That's why he let me try it out for a week. When it worked, he requested my doctor change my prescription to an apap. (But I ended up getting some kind of upgrade attachment (switch-out) to my Respironics RemStar M-series humidifier, instead of a ResMed Autoset Vantage. It is called a Respironics RemStar Auto M-Series but it is working for me, at least for now. (No one ever helped me with the really bad pressure sore problem, or even responded to my numerous mentioning of it. I am protecting it with bandaids that I cut off both ends to fit between my eyes.) I got lots-and-lots of advice, encouragement and support from reading this forum and I am grateful. This forum has a really, really important value for anyone who is new or just struggling with a cpap or sleep apnea related problem. I solved a rainout issue with a hose cover. When rainout persisted in my mask, I got a Zoo Med Repti Heating Cable. It is the 15 watt cable and 11 and one-half feet long. I plug it into a Zoo Med Repti Rheostat to control it. The rheostat plugs into the wall and has an off/on dial that I place next to my apap on my nightstand. I rigged an overhead support stand for my hose using $8,00 worth of one-half inch pvc pipes. It routes my hose from my machine on the nightstand, behind my bed and over my head. I can change positions with ease and it never touches my body. Through all of this, the DME people and my doctor were discussing my issues without involving me. I was the one who was suffering but they did not want my input. There is some kind of unholy alliance between the DME, the doctor, and the insurance company. It was impossible for me to change to another DME company. I am almost certain that some of the cpap/apap equipment I was given is used equipment, in spite of billing me for new equipment. (I won't even get into the gross overpricing and over-billing issues I suspect.) Overall, this has been a very, very, very horrible experience for me!!! If I had not been is such bad shape going into this cpap therapy, I would have abandoned it (and took my chances) when I was six weeks into it. Through it all, whatever the issues and frustrations, you must persevere!!! It is worth it to finally get to the point where you are sleeping well and feeling rested. Maybe one day, this whole process will be cleaned up and cleaned out. People who are struggling as you and I are struggling should be given follow-up sleep studies and observed to study their specific issues instead of being left to the incompetence of DME's who bluff and guess on a hit-and-miss basis, and, who influence their co-workers to punish their patients/customers just because of disagreements with someone who is suffering. Good luck, persevere and God bless!




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[Irene P.]

Thanks for sharing, Purple Swan. Persistence (and Insistence) is indeed very important. Glad you're doing better now.

[Fred D]

It is a shame you had to go through so much grief before getting someone to listen to you. Too bad complaining to higher ups did not help
you resolve your issues sooner. Perserverance is a virtue and you are commended for sticking to your guns until things were straighted out and
you can now enjoy some restful sleep.
Congrats on feeling better!!!

Fred D

[KatieW]

Thanks for posting your story, and congratulations on your good results. Phooey on your DME, but you were successful in spite of them. Reading about your persistence and how you took charge of your therapy will help newbies who are reading this.

If you haven't already, get a copy of your sleep report and prescription. It is part of your medical record, and in case you ever want to buy a back-up apap on-line, you will need your prescription.

[gasp]

KatieW has good advice about getting your sleep report and prescription. You are entitled to (even if they think you can't read it) the entire report, not just a summary. You're entitled to all the data the sleep doctor sees.