A Relative Newbie Gets a Big Surprise

[steam261]

A couple of years ago, I was diagnosed with OSA at the Mayo Clinic's Sleep Clinic, promptly acquired a Resmed S9 Auto and assorted paraphrenalia and headed home to be cheerfully compliant. And I was. I only missed three nights in my first year and I can't even remember how that happened. After a year, my AHI was consistently less than one, I was tired all the time, seemed to need naps worse than before the CPAP. I was using the thing 6 or 7 hours per night, about all I could manage to sleep.

So the year ends, and off to the Mayo I go, tired, wondering why the CPAP thing didn't seem to be making me any better. New Sleep Doctor this time. Reads my data, tells me I am doing wonderfully well, my numbers and compliance are "superb" and I "shouldn't be having any problem". I tell him I'm not sleeping well, tired all the time and fell lousy. He tells me my numbers are wonderful, prescribes a sleeping pill and sends me on my merry way.

Okay, so I am a little dense. I go on my merry way, tired all the time, getting poor quality sleep, but great numbers! Gotta love those great numbers.

Now, I have COPD. I quit smoking 18 years ago, but it wasn't nearly soon enough. I did pretty well, as such things go, but after age 60 appeared in my rear view mirror, I seemed to be getting weaker and to have more and more trouble breathing.

Bouts of pneumonia became a feature of my life, and I became less and less mobile. And more and more frustrated. Somewhere along the way, I acquired a new Primary Care Physician, and was finally frustrated enough to go to her and say "Look. I have no quality of life. My mobility is severely impaired, I am sleeping poorly and I can't do things with my little granddaughter like I used to. (She's 4).

She tested, sent me to a pulmonologist, and it was decided to put my on oxygen. I detest change, and truly feared this evolution. In preparation for the arrival of the DME with my oxygen system, my doctor asked me a question. She said, "I know your CPAP numbers are good, but by any chance to you awaken in the morning with a headache that lingers for 30 to 60 minutes?" I said, "Sure every day." And she replied, "Bingo! You're desaturating at night!" So now there's a pretty green tube connected from my brand new liquid oxygen system to an adapter on my Resmed. And last night, I slept my first night with CPAP + O2. It's been 15 years since I slept through the night and nearly as long since I slept more than 6 or 7 hours in a night.

So imagine my surprise when I awoke this morning, sunlight streaming through the shades, rested, relaxed and completely devoid of headache after 10 and a half hours of uninterrupted sleep. Stuck my finger in the oximeter and lo and behold: 97%!! Woohoo. I was used to waking up in the low 80s. So now 48 hours into oxygen therapy, I can do things I couldn't for a long time (like walk up the stairs from our garage without stopping to rest).

I like this. No. That's not right. I love this. They say that despite my screwed up lungs my heart is in good shape, and I may even live long enough to watch my beloved little one graduate, marry and other things. I am so bloody happy I needed to share my experience with somebody.

[Bright Choice]

Wow, that is a great story. It's great that you are feeling better but how in the world did they miss those desats? No excuse IMHO. It just shows that we should never stop asking questions and looking for answers. Keep up the good work and enjoy the wedding

[redjoe]

Congratulations, and good for you for not giving up!

[MDALE]

Congratulations on your success!

Your story makes me wonder how many other people posting here, who are sleeping poorly in spite of XPAP, could be in need of supplimental oxygen. Perhaps pulse oximeters should be more widely used.

[Muse-Inc]

On the S9 Auto, my AHI averages 0.2 but I do desat occasionally, which I consider <90. I count how many seconds under 90 and so far no lower than 85 (and that low only 2-3 times, typically 88) & no more than 8-14 seconds. I do not see a rise in pulse so my brain is not going on hyper-alert with these. I sleep with mine nightly. I have skinny fingers and do not appear to be experiencing any of the negative effects some report. More commonly I have relative desats: when my SaO2 is running 97-99, drops to 91-92 and then rises to 95-96. So far, not an issue IMHO; if I see a pulse increase or start feeling lousy, or see longer periods <90 or see the lows getting lower, I'll make some recording and take 'em to my sleep doc.

[2 B Sleeping Soundly]

steam261,

Welcome to the Forum! Great story and a fantastic ending (or is it just the beginning of many more successful nights of sleep and well rested mornings )

Glad to hear that you have finally found your missing piece of the puzzle and are now dealing with your ensuing fatigue and unknown COPD with O2. I too suffered from headaches most mornings for many years, some were almost migraine like. I always attributed them to being sinus headaches and the cause of those being changes in the weather (low to high pressure or vice a versa), but didn’t know yet about my O2 de-saturations at night from severe OSA (if I am remembering it right, my home sleep study had me down as low as 74%). My PAP therapy has changed all of that and luckily I have never had any issues of low O2 since.

May you have continued success!

John

[steam261]

Thank you for the kind words! The second night on O2 was a solid 8 hours of sleep. Me, my CPAP and liquid oxygen. What a combo.

[Bookbear]

Wonderful story! Thanks for sharing this with the board!

[Papit]

Great to hear! Your experience begs the question, shouldn't we all have a pulse oximeter to, at least occasionally, record an all-night graph of our Sp02? I would think you're hardly unique in going through an extended period of time without our doc ever discovering very unhealthy oxygen saturation levels while using xPAP (or not using xPAP).

[steam261]

Great to hear! Your experience begs the question, shouldn't we all have a pulse oximeter to, at least occasionally, record an all-night graph of our Sp02? I would think you're hardly unique in going through an extended period of time without our doc ever discovering very unhealthy oxygen saturation levels while using xPAP (or not using xPAP).

Two things are necessary: the oximeter and the wits to realize that you're looking at "bad numbers". I lacked the second. I feel absolutely wonderful. Scary good. Can hardly wait to curl up with the cpap machine and sleep!

[motherall]

I wore a pulse ox along with all the other hookups when I had my sleep study a few weeks ago. Is this not the norm?

[Bookbear]

Yes, very much the norm during a sleep study, but most people do not do this on a nightly basis. I believe Papit is talking about regular nightly use, not just during a sleep study.

[Papit]

Yes, I meant using it at home - not necessarily every night though. That's up to the user. But for purposes of doing a self-check, to cover for docs who don't think to check a patient's saturation level (particularly in stressed-out cases such as yours was, Stream), even using a pulse ox once a week or once a month would have helped discover your medical problem a long time ago. We don't all have to be using an oximeter like Max and a few others do and still make very good use of the device. They're fairly inexpensive (some of them) and apparently the technology is such that accuracy is not an issue. To me, having a pulse oximeter and at least occasionally using it to check saturation range is a no brainer.