Iris is what I named my C-PAP machine. I decided to name it since we would be spending so much time together. Trying to remain positive, I chose the name "Iris" because purple iris is my favorite flower. And, the color purple is indicative of imagination and spirituality.
I was diagnosed with severe sleep apnea in May, following a sleep study test, which I've been blogging about a long the way. Via a series of non-comedy errors with the oxygen company, I finally got the machine 15 days ago, so last night was my 14th night spent with Iris.
It has not been an easy journey with 'ol Iris. Definitely a love/hate relationship. I had to be fitted with the full face mask because of my tendency to drop my jaw open during sleep. It's designed to prevent that, or if it happens, I'm still breathing in the magic concoction between the C-PAP machine and the dehumidifier.
The first night, a few Fridays ago, was splendid! I woke up the following morning actually feeling rested. I felt more alert. Even colors seemed for vivid. In spite of the tediousness of the equipment itself, I saw what I believed to be great potential using the C-PAP. I thought "give me a week of this and I will start getting my energy back and good things will happen".
"Not so fast!", said Iris. The next 2 or 3 nights in a row, tho I've been getting help getting rigged up at night as I learn to do it myself, were epic failures. Air bubbles kept cropping up around the edges of the mast I had to adjust. The technician who set me up said if air bubbles, even one, develops during the night while I'm sleeping, the whole night is a bust and ineffective. So I worked hard many nights trying to stay ahead of the air bubbles.
I did call the company asking for advice on how to remedy this problem and/or try another mask but they didn't return my call. So why give up after once call? I've experienced very poor customer service from this company from the onset and am choosing to continue to work with it than frustrate myself some more with their employees.
I go back to them late July for a 'compliance check'; they'll run the computer chip to see if I'm in compliance with the insurance carrier. I'll bring all the gear at the time and insist on either getting this mask to fit better of try another one.
According to my Doc and the oxygen company, 'compliance' means using the C-PAP for a minimum of 4 hours every 24 or insurance won't cover it. After the wrong piece of equipment was ordered, delivered, reordered and they delayed I finally got it. For as many times as I talked with the oxygen people, I got a answering machine message late in the afternoon preceding my early appointment the next morning that..."I'm sure your Doctor's office told you there is a $200+ co-insurance payment due in the morning, so be sure to bring a credit card." HUH? Nope, my doc's office didn't tell me that and during the numerous times I talked to 2 different employees at the oxygen company over a number of weeks, neither did they.
After I got that message, I called back in a panic. I live on a modest social security disability check and to be told toward the end of the month I'd have to cough that up, really scared me. As well as really irritated me. My out-of-pocket medication costs alone are over $200, in addition to regular bills and, oh, luxuries like FOOD. I also didn't know if that meant $200 every month. I was assured it was a one time charge, then my co-payment would be $20-25 per month. More doable.
But when I arrived the Friday morning, I was told the person I spoke to the previous day was wrong, and after the initial $200 co-pay, it would be a co-pay of $100 a month.
Seriously folks, I don't think it needs to be this complicated and communications so damned unclear and frustrating. Don't we have enough on our plates trying to get by, as well as we can? There's enough built-in frustrations with PSP and all it encompasses as it is.
Back to the C-PAP machine. Tho so far I seem to only be getting 1 or 2 quality nights out of about 5, and I'd like to see that improve, it seems to be helping. I've not once woken up in the morning feeling like I was going to vomit, experiencing chest pain, and feeling out of breath. What a relief!! For a solid 5 or 6 weeks, with it's intensity increasing with time, I honestly felt upon wakening I was on the edge of a heart attack or stroke or some big system failure. Feeling those symptoms first thing in the morning, and consistently, had me scared, not to mention quite sick.
I see my Doc a few days after the compliance check, so he'll have the whole computer generated report. I was told I received the most sensitive system available, about a $6800 machine, so he should have a lot more data than the bleak info he received from the one night sleep study; hopefully these results won't be so bad.
The bottom line is now that I've had a taste of what physical effects a good C-PAP night can do, I want more, meaning consistency. I will admit because it's a tedious system in general and not the most comfortable thing to use/wear during a period of day you're supposed to be resting, I peeled Iris from my face and flung her across the room; the mask is attached to a long cord; my Iris can fly!
Kind thoughts to you all,
Judy
Any benefit from oxygen
Relaxed and ready to continue
Difficulty breathing. Scans and tests leave doctors clueless. Antibiotics/steroids don't help
Equipment soothing
