04-28-2024, 09:12 PM
Not sleeping + non-compliance = Big Mess
Hi, I just found this forum and I hope someone can help me. I have had a bipap for approximately 15 years. I have severe apnea. I am disabled, and have many physical and emotional issues that interfere with my sleep. I have always been very faithful in using my bipap, because I think breathing is a good and useful thing. However, the last few years my sleep has deteriorated. The sleep clinic that I used to go to frustrated me. Every time I got a doctor, and I liked all of them to some degree, he left. I went through four doctors in 6 or 7 years. I went to a new one there, and he immediately rubbed me the wrong way, and I was done with them.
My PCP at the time sent me to a place that did an at-home test with their own machine, and they had a doctor that would read it. They recommended some kind of a new machine for me. I was excited at the thought of less fatigue. My PCP had a clinic in a small-town hospital, and one day 5 years ago, the hospital suddenly closed. My records from that test were unobtainable. The new machine was never ordered, because my supply provider never got around to it. My new PCP’s solution was to ignore the problem. A year ago, that PCP retired. Finally, I have a new one that I love. He sent me to a pulmonologist. They were supposedly trying to get those records. But they forgot. I finally now know that they cannot obtain any of my sleep records. Plus, as time has gone on, I have developed a huge resistance and fear of going to bed, no matter how exhausted I am. So I either only get my bipap on very late, usually 2-5 a.m., or I fall asleep before I get my mask on. Therefore, according to Medicare, I am not compliant. Like I said, I’m a mess!
I don’t think the pulmonologist wants me to go back until I am compliant. He gave me a sleep hygiene lecture at the time, and I’m trying, but I know I am not there yet. I feel awful all the time. I’ve been ordering masks and stuff online and paying for them. But I need a sleep study and a new machine. I have had this machine for probably 10+ years, and it keeps telling me its motor life is exceeded. I can’t even think straight anymore. I seldom drive because I’m not usually safe. I wish I could figure out a way to wear my glasses with my full face mask. That way if I would be reading or something and fall asleep, I would already have my mask on. I am too stuffed up to breathe through my nose.
Sorry this is so long. I am so frustrated with myself, and I need to be able to function. I look at my little dog sleeping on my lap and I am envious. Does anyone have any suggestions? I would be very grateful.
My PCP at the time sent me to a place that did an at-home test with their own machine, and they had a doctor that would read it. They recommended some kind of a new machine for me. I was excited at the thought of less fatigue. My PCP had a clinic in a small-town hospital, and one day 5 years ago, the hospital suddenly closed. My records from that test were unobtainable. The new machine was never ordered, because my supply provider never got around to it. My new PCP’s solution was to ignore the problem. A year ago, that PCP retired. Finally, I have a new one that I love. He sent me to a pulmonologist. They were supposedly trying to get those records. But they forgot. I finally now know that they cannot obtain any of my sleep records. Plus, as time has gone on, I have developed a huge resistance and fear of going to bed, no matter how exhausted I am. So I either only get my bipap on very late, usually 2-5 a.m., or I fall asleep before I get my mask on. Therefore, according to Medicare, I am not compliant. Like I said, I’m a mess!
I don’t think the pulmonologist wants me to go back until I am compliant. He gave me a sleep hygiene lecture at the time, and I’m trying, but I know I am not there yet. I feel awful all the time. I’ve been ordering masks and stuff online and paying for them. But I need a sleep study and a new machine. I have had this machine for probably 10+ years, and it keeps telling me its motor life is exceeded. I can’t even think straight anymore. I seldom drive because I’m not usually safe. I wish I could figure out a way to wear my glasses with my full face mask. That way if I would be reading or something and fall asleep, I would already have my mask on. I am too stuffed up to breathe through my nose.
Sorry this is so long. I am so frustrated with myself, and I need to be able to function. I look at my little dog sleeping on my lap and I am envious. Does anyone have any suggestions? I would be very grateful.
