After a Month (plus a few days)

[steamfan]

In June, I went to the Mayo Clinic because I have COPD and my local clinic/doctor's attitude was "oh well, not much we can do. So sorry." I had deteriorated to the point where I could walk maybe 50 feet if I was lucky. No one had EVER mentioned sleep problems, nor did I think that I had any.

After 5 or 6 days of tests my pulmonologist said "You know, I think you need a sleep study. You do have COPD and you are not being medicated correctly for it. I'm going to change your meds, and send you to pulmonary rehab for 4 or 5 months. But I want you to have a sleep study."

Okay. It's the Mayo Clinic. If he'd said, "I want you to rub blue mud in your belly button and howl at the moon" I probably wouldn't have asked questions, other than "Where do I get the mud?" So I went to the sleep study. Bemused, sure that I didn't have OSA and ready to chuckle at them when it was over.

Huge surprise, they woke me up at 1 a.m. and said, "Your doctor wants you on a machine right now." And they titrated me then and there. I departed the Mayo Clinic that morning with a CPAP machine, hoses, a mask, a humidifier and a huge amount of patient education material.

Went home, hooked things up, discovered that my nose was so stuffed up you couldn't have cleared it out with a jackhammer. Realized that I am normally a mouth breather and that my nose wasn't stuffy the night I had the PSG. Whee. Back to Mayo for a full face mask.

Come home, hook up. Adjust things. Fall asleep.

No miracles the next morning. AHI was about 8 for the night, and I did feel a little better. Read patient education materials, and continue to march. Most nights AHI around 8. Some nights its 1 or 2. I thought and wondered and obsessed a bit, but decided not to install the software and read the card and instead just call the Mayo's Sleep Center and ask if I should do anything. 45 seconds into call, talking to sleep doctor. Explain silliness. He is upbeat and cheerful, and without telling me why prescribes a recording oximeter. Go to DME, purchase thing. Hook it up, and for the next three weeks cheefully ignore everything and SLEEP. Gawd did I sleep. I dreamed, my nocturia (every 90 minutes) went away. And (blush) the ED that had plagued me for 6 years or so, simply vanished.

So yesterday, I head down for my one month follow up visit with sleep doctor person. My sleep doctor is not in. Replaced by a Research Fellow/M.D./Ph.D. from Stanford and the director of the Mayo Sleep Center (who is an extraordinarily nice guy).

Research fellow happily shows me graphs. Almost no obstructive events, no centrals, just hypopneas. That's why they ordered the oximeter, cuz they suspected I was doing hypopneas and they wanted to see if/how I was desaturating. The answer is: not at all, the hypopneas where short, and though they contributed to my AHI they were completely insignificant. They said that effectively, my AHI was about 1.3. Leakage for the month (except for one night for about 40 minutes) was zero. I liked that. I like my mask, I sleep comfortably in it.

They did suggest that I up the humidity for 3.5 to 4, and that I put the machine at a lower level than my body. I didn't ask why? (Remember the blue mud thing above?) I'm just going to do it.

Oh...and the other stuff? The new meds and the rehab have helped enormously. I walked a mile today for the first time in a very long time. Not quickly, but no stops either. So life is good, I love my machine (even though it is made by the evil ResMed folks). They said, "We'll see ya in a year. If you need anything just call our direct lines".

Gotta love the Mayo Clinic.

Regards,
Doug

[Pad A Cheek]

Now that is how it is suppose to work in a great outcome.
I enjoyed reading your story and there are many others who will get encouragement from it.
You have a great attitude about this. I am so glad your quality of life is getting better.

The reason they said to put the machine lower than your body is probably if you have rain out in the hose (condensation from the humidifier) the water will run back down toward your machine and not into your face.

Karen

[OutaSync]

Great report, Steamfan. Thanks for sharing.

Bev

[steamfan]

Now that is how it is suppose to work in a great outcome.
I enjoyed reading your story and there are many others who will get encouragement from it.
You have a great attitude about this. I am so glad your quality of life is getting better.

The reason they said to put the machine lower than your body is probably if you have rain out in the hose (condensation from the humidifier) the water will run back down toward your machine and not into your face.

Karen

Thank you for your kind words. It has truly been an adventure so far. I have just learned that I should probably find my reading glasses before reading this forum, as I thought your signature said "...Humidifier wtih Two Children" rather than chambers.

[Beth M]

That's really great news. A coworker of mine just went to the Mayo Clinic for his sleep apnea and is having splendid results just as you are!

Me, I chose to go to a local Sleep Clinic/DME. Hindsight being 20/20 I should've taken the short trip to the Mayo. Sounds like you're even getting excellent after care!

Well done!

[lbw]

It is wonderful to hear your success. Congrats!