First, let me apologize, I didn't mean to write war and piece, but I put the contacts on my fingers and they could see the keys on the keyboard... that will teach me to let my eyes see what they are typing!
So go get a cup of coffee, and have a read....
Everyone who's ever had the misfortune to be around me when I slept would tell you the roof would rise and fall with my snoring, windows would break, doors would open and slam shut, curtains would flutter like a flag at full staff because of a strong wind.
I've always (even as a child) only slept 3-5 hours a night at most. All my life, I'd get a bronchial infection that would turn to pneumonia at least twice a year.
In September of 2015, I started not feeling well. And it continually got worse. In October I developed a bronchial infection (nothing new for me) so I went to Doc-In-A-Box (Urgent Care, I didn't have a primary Dr.) I requested they give me a high powered steroid inhaler and my bronchitis would likely clear up almost overnight (it's the way it's always worked for me) instead of turning to pneumonia.
The PA didn't like me asking for what I knew worked so they prescribed albuterol which didn't do jack. The following week, I went back, and now they gave me a steroid inhaler, a little late as I now had pneumonia. To this PA's credit, they told me about a Dr.s office right behind their office that was accepting new patients. So I strolled over and made an appointment for the first available.
I was scheduled to be seen as a 1st time patient (15 mins) and I was in this guy's exam room for 120 mins. I thought he was going to have a coronary when he started to examine me.
He was stunned that my BP (110/62), and blood work and everything other than my pulmonary system were in really good condition. This Dr prescribed a stronger steroid inhaler. Then I took 3 weeks of vacation around Thanksgiving, went to work for one week, then went on 4 weeks of vacation. I was out of state and found myself seeing a Dr out of state 3 times a week for 4 weeks and this Dr. was about 30 seconds from putting me into a hospital instead of letting me fly home. This temp. Dr. called my Primary care and explained what he'd been seeing me for, sent me home with films and other stuff.
I got home and my primary care took control. My Primary was concerned I had a PE, was threatening to put me into the hospital to be baby sat until they could figure out what was going on with me (oh joy) Instead, my Dr. sent me for VQ scan, Cardiac MRI, CTSCAN of my lungs and a PFT and got all of this done inside of 2 weeks. I don't know how this Dr. got it all done that quick but they did. For example, for my Cardiac MRI they opened a slot for me at 06:30 AM (not in the normal scheduling), something similar for my VQ scan. PFT revealed lots of things, but the big thing was my max TLC was about 2.1 L (I'm a 6'2 Caucasian and my TLC should be closer to 8 L). And my FEV's indicated COPD (not unusual for those with chronic bronchial infections all their lives.) I should note, that since October of 2015, my ability to sustain a walk has decreased. My maximum bipedal distance is now about 1000 feet so they've given me a vehicle disability placard that I can display in whatever vehicle I'm in.
My pulmonologist (don't confuse my pulmonologist with my sleep Dr who's also a pulmonologist but all they do these days is sleep) suggested I get enrolled into a Pulmonary Rehab course. So I got tossed into that for 4 hours a day for 4 weeks. At a cost of almost $40,000 there was no measurable difference from my measurements before the Pulmonary Rehab to the the results measured at the end of the Pulmonary Rehab.
So I was sitting in my physicians office and a med student came along shadowing them. Somewhere along the line, my Dr. asked the student if they had any questions / comments. This student (who's working to be a psychiatrist) asked if I'd had a Sleep Study for Apnea. Then there was a short discussion about a Pulmonary transplant... Oh Joy... let's hope that's not in the mix too!
Ok.. so I got queued for a sleep study inside of a week. Had the sleep study and got the results. Sleep study revealed an AHI of (ready for this) 127.3 an O2 level of 62% with notations of me having cyanosis Ok.. so as they put it to me, I was awake for some 25-30 seconds a minute on average, never ever got into rem. Sleep study for me ended after 4 hrs 10 mins (I couldn't sleep any more). Sleep Dr (a pulmonologist and a pulmonary surgeon that's now specialized in sleep study) had a long conversation with my primary. No one could figure out how I functioned in life, how I could work or how I could drive let alone concentrate. But, things were changing for me now and I am hardly functional.
Put me onto a CPAP; constant pressure of 18 cmH20... Went back to primary a week later and didn't feel any better.. and we couldn't figure it out. Suspected it might be the mask that was causing me problems as I mentioned I would awake because of air getting into my eyes from the seal on the bridge of the nose. One week later changed from nasal mask to Pillows (P 10's). Asked DME if they had software I could get to see what my machine was recording because the website was reporting good success for me (except for leaks) and they told me I wouldn't understand it. AHHHHH!!!!! Where's my GUN!!!
Made an appointment for the following week with my Primary. Didn't notice any difference after the mask -> pillow's change. Did some digging around on the network and found SleepyHead software. Installed it, and low and behold, I could now see what was going on. While I was getting 6-14 hr's sleep / 24 hr period, it was unusually fractured. 30 mins, 45 mins, 1-2 hrs, sometimes 3 hrs, rarely 4 hrs and never more at contiguous block. But, my AHI's were almost 0 so the Insurance company was happy and not about to allow my CPAP to be converted. Took Pictures of the data on my card and showed them to my Primary and his answer was, "your going back to sleep study."
So, now I'm' back at the sleep Dr's office, (first time I've actually met this guy) and after the normal introductions, he starts wandering around in my medical record. Then I hear him say, "Oh.. I remember you.. your the one who turns blue when you sleep!" I retort, "Yup, I'm Poppa Smurf!"
Then a couple hrs after my appt with the Sleep Dr., he calls me up and says, "I think you've got something known as 'Diaphragmatic Paralysis'" He explains it's usually caused by some "traumatic" event to the chest. Auto accident, surgery, being speared by a football helmet in football... that kind of stuff. The bottom line is the diaphragm only works partially, usually because of something kind of like a "Pinched Nerve" and he's going to talk to a "Pulmonary Surgeon" to get his thoughts to see if I'm a good candidate for "Diaphragmatic Nerve Repair."
Haven't heard back on this yet, it's still in the works but it wont likely resolve my sleep apnea.
He calls in his guy to pull the data from my CPAP card, get's it in hard copy and about has a fit. Sent orders to the DME to get me a ResMed AirCurve 10 (Vauto) set at IPAP - 18 and EPAP at 12. Insurance co, balked and sleep dr got back involved and changed my mask from the P 10's to a Phillips DreamWear Under the nose pillow.
So I've had this new device since Friday (that's 2 days ago). I'm still taking my naps anytime after 10 AM and I usually seep for between 2-4 hrs, then I usually crash any time after 8 PM.
I'm feeling better, but my sleep pattern is still fractured but it's no longer less than about 2 hrs at a shot (unless my phone goes off and it goes off all hours of the day and night), according to both SleepMaster and ResScan... Thank goodnes for this site and sleepyhead, FlashPap and having the ResScan software!
Now I'm just waiting out a month or two so I can amass enough data so I can get a good picture of what's going on so I can salt and pepper the parameters in the VAUTO so I'm doing better. I get to see the Sleep Dr. again in October...
This has been one very expensive year medically ... in a lot of ways.
BTW, I'm reading everything I can get my hands on about pulmonary systems so I understand..
I've done some searching around here and haven't found the definitions to some of the terms presented in SleepyHead or ResScan so it's difficult to ascertain what's being presented.
Here's a couple of links that others might find interesting and useful.. I'm trying to take a crash course in pulmonary systems so I can understand everything that's coming my way like a freight train.
A Primer on Reading Pulmonary Function Tests
by Joshua Benditt, MD
Re: Pulmonary Transplants there's the following:
SIZE MATTERS: IT'S ALL ABOUT HEIGHT, SEX AND RACE!
Thomas M Egan, MD, MSC
Professor of Surgery
University of North Carolina, Chapel Hill