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05-20-2019, 01:30 PM (This post was last modified: 05-20-2019, 01:35 PM by MediocreOpie.)
RE: My Journey Begins
I don't know, sheepless. That's why this is a journey. I'm just along for the ride.
Attached is the redacted page 2 of the notes from my encounter with my provider. As you can see, they diagnosed me with central sleep apnea; the reason I will be reviewed for potential medical board proceedings come August when my 90-day compliance period is over. I just realized they classified it as primary, which gives me a sigh of relieve that they do not believe it is in my brain (tumor) or my heart. At least there is something good to grasp ahold of!
They also flagged me with CKD, but I'm not sure that's entirely true. My blood tests read like a sine wave.
Not saying doctors can't be wrong, but this is what I have been officially diagnosed with.
primary ca makes more sense. page 2 of the sleep study under impressions says osa and treatment emergent ca, which makes no sense given the lack of oa, unless the h is obstructive. however, you only had 3 apnea events - ca - before titration, which is a long way from definitive. another odd thing is setting your machine to 14cmw when you actually had lower ahi and rdi at 12 and 9cmw. ca is more likely with higher pressure so you'd think they'd want you to have the lowest effective pressure. sorry, all I'm doing is raising questions rather than answering them. it's beyond me. hopefully the more-experienced members will figure it out. I'll be interested to see how it works out for you in the end.
A glimmer of hope! Last night was my first night in the 45 nights I've been using my CPAP that I had no events! Today was the best I have felt in over five years. While I'm certain it may have just been one good night, I sure am glad to be on this path now that I have figured out what was causing my issues.
(06-25-2019, 10:40 AM)sheepless Wrote: that's good news. have you made changes or just gotten used to cpaping?
No changes. I guess I'm getting used to it. My AHI has been pretty low lately. I had a bad couple of weeks a few weeks ago, so yesterday was just awesome!
You are doing way better than I was the first few years. My first "sleep doctor" didn't help me very much in getting my sleep issues resolved. I was diagnosed with Restless Leg Syndrome (RLS) and she helped me get that under control. But I kept telling her I was getting about 3-4 hours of sleep at best per night. Years went by, nothing good happened. I had to change doctors. The second one was very excellent and she immediately ordered another sleep study. Put me on BiPAP and I got my ResMed S9.
Fast forward another year, and then I finally got used to wearing a mask at night. That's when everything changed for me. I still wake up sometimes in the middle of the night, and I think I can still do better. I'm thankful my journey, though long, has gotten me to this point. My AHI is around 3.0 for the last year. The other numbers, I think, look good. I'm still learning how to read the data. I'm not confident my current doctor is versed in the CPAP/BiPAP therapy.
Hang in there. You're doing very well at this point. You'll get to where you need to be.
My two cents...
It does not matter how slowly you go so long as you get there.
So...it's been a while. Over a year since my last post. Life has been quite busy and hectic. We are in the process of moving and just got to Alaska last week. Man was that an epic trip (Nebraska to Alaska via Canada)!
I figured I would pop back in an update on my journey since it has been roughly 14 months since it started. I've noticed something alarming this past week and a half: increased CSR. From April 5 to June 15, I had three events. Nothing concerning, really. I honestly haven't looked at my data since we started the moving process in early June. I decided to pull my SD card tonight to see how I was doing, especially since the myAir app showed an AHI of over 6 on Friday night, which is the highest I have had in a long time. Needless to say, I noticed CSR events on three of the last 10 days. I just wanted to see, has anyone else experienced CSR with primary CA as a diagnosis? Having just moved, I have to wait for my information to update to message my doctor.
It's been a strange process with CPAP over the past 429 days. I have had a handful of no event nights; a few in the 45-120 day range, then just sporadic at best. I have days where I feel great and then hit a slump of a few days to a couple of weeks where I just get completely gassed by 3-4 in the afternoon. I think it is definitely time to discuss with my doctor and see if I am doing ok. That said, what type of range should I be looking for in AHI with CA as my primary diagnosis? Just curious to see what others have experienced. I know we are all different, so I'll take whatever with a grain of salt. For reference, I am at 0.68 (1 yr), 0.73 (6 mos), 1.16 (30 days), 2.02 (last week), and 2.45 (most recent).
I do feel like I sleep better with the CPAP compared to where I was prior to May of 2019, but I still feel like I am not sleeping fully. My Garmin has gone from 2-3 hours of deep sleep tracking to 4+ since I began therapy. It has allowed me to make it past 9-10 in the morning, but I still feel like there are days where I just don't really care to do anything because I can tell I didn't sleep very well, even though I may have had a 1-2 AHI the night prior. Just some thoughts...
diagnosis_page2.pdf (Size: 63.43 KB / Downloads: 27)
