July 11: Another diagnosis to add to the list.....

So, remember the last post about being really, really tired?  And the sleep study that I was doing only to humor my cardiologist?  Funny story....

So I arrive my typical few minutes late to the 9:00 pm appointment to find that someone else is sleeping in my bed--literally.  It turns out that the woman scheduled for the previous Thursday either got confused (despite admitting she'd gotten a phone call) or thought she could just sneak in and got there earlier and just said she was there for the sleep study.  Apparently her paperwork was still lying around from before, so they didn't question it until I showed up.  This lead to about 45 minutes of back and forth, with me offering to reschedule since she was already changed and in the bed but insurance being the issue.  So, by the time the sheets were changed and I was in the bed it was after 10:00. 

The technician came in to hook me up, and it's quite the process.  Fortunately they don't shave your hair anymore, but the electrodes are placed in thick goopy stuff that gets blobbed all over your head.  I think it was ten electrodes and wires, then something that went under my nose and electrodes for ECG and then limb leads to measure muscles, plus super sensitive microphones that monitor your noises and allow you to ask to go to the bathroom.  It took about 75 minutes to hook up.  In that time the technician told me--in excruciating detail--about  her marriages, recent divorce, current boyfriend and his problems, all the hours she worked and everything (it seemed) about her current life and how hard she worked.  It crossed my mind at one point that this was part of getting you to go to sleep with all the wires hooked up--they had her doing a monologue so boring that you would be willing to force yourself to sleep just to stop listening to her. 

In that whole time she asked me one question: So why are we doing the study?  At this point I was a little pissed, because when you are the patient it should be at least a little about you and let's face it, I'm a fascinating medical subject.  So while I wasn't going to lie, I decided to be as minimalist as possible and see if she would ask even one more question.  My response was 'I made the mistake of telling my doctor that I was tired when I woke some mornings.'  She immediately accepted this information, never asking another thing after my name and date of birth. 

They let you bring in your stuff, so I had my gratitude stones and a meditation reading and yes, the crickets! It's after midnight when I'm finally settling in, lights are off and I'm supposed to go to sleep with all this stuff on.  The tech comes in and says my ECG isn't reading right, switches from back to front hook-up and leaves again.  Two minutes pass and the door opens again.  She leans around and asks 'Uh, do you have a pacemaker?'  'No', I reply, 'I have a mechanical mitral valve.'  She says in a peeved tone 'You didn't tell me that!', to which I respond with as dry a tone as can be mustered under the circumstances 'Well, it's not like you asked or gave me an opportunity to say anything.'  I think she got the point.  Maybe it will keep her a little more professional for the next person.

Somehow I got to sleep, woke about 4:30 am, went to the bathroom with stuff trailing behind me and wrapped around me, then slept what seemed lightly because I knew they were waking me at 6:00 am.  She was polite, barely looked at me when I left.  Figured she was a little embarrassed.

That was Thursday into Friday.  Tuesday there is a message from the pulmonologist saying 'Well, I have your test results and we need to talk.'  Well, shit, that doesn't sound normal.  Honestly, I was expecting 'Your test was normal.  Let us know if there is anything further you need.' 

We spoke Weds, July 3, which is when I found out I have moderate obstructive sleep apnea (OSA) with very severe hypopnea during REM sleep, with my oxygen saturation dropping down to 77% (it's supposed to be above 95%, if 92% in the hospital you are on oxygen).  He explains that my REM sleep, which should be about 25% is 9% and that the sleep cycle before and after that, which should be > 50% is only 13%.  In essence, I'm getting almost no quality sleep.  He says the degree of obstruction is not that bad, most people would not have symptoms, but that my heart and lung problems/abnormalities then come into play which is why my sats drop critically low.  As the pulmonologist nicely put it: 'because you are....um....special.... that it's so severe'.  Yeah, I'm special all right.  Sucks to be me.

My story isn't typical of what you think of with OSA.  I don't fall asleep anywhere but bed, even when I lie on the couch and rest I don't even doze.  I've never fallen asleep in the car or sitting anywhere, even when I've tried to on a plane or something.  I'm not that overweight.  My neck isn't short.  And here's the biggie: I don't snore.  Gael and I shared a dorm room last year at UUMAC, Susan is up before me when I visit her, so even in the last year no one has heard me snore.  Go figure.  It makes me wonder if almost everyone should go and get one of these tests, because there is clearly a wide range of symptoms here whose only commonality is being tired. 

Apparently there are a lot of people coming in to get tested, however, because they couldn't schedule my follow up until the 25th.  It's more than a little frustrating, because now I know there is a problem but can't get anything done about it for three weeks, and then I'm sure it takes a week or more to get the equipment.  Meanwhile, I'm exhausted now and I want to feel better--NOW!  But wait I must.  Despite the fact that it's depressing to know there is something more wrong with me, the huge up side is that this can be coped with, and it should make me feel dramatically better.  I'm very excited to see how much of an improvement in my daily life there is, and that will give me incentive to adapt to the equipment needed.  It makes things more difficult for travel and all, certainly takes spontaneity away, but that's a small price to pay for actually feeling rested the way 'normal' people do.

The plan was for me to head to Susan's for the July 4th weekend, spending time with her, Mark and his wife, plus Beth and George.  (If you've missed the family tree they are all cousins: Susan & Mark are my second cousins, their mother Beth is my first cousin once removed as she and my father were first cousins.)  Unfortunately another medical issue cropped up which delayed my getting to D.C, although I did make it down, but I'm still processing and not quite ready to talk about it yet.  Sorry to leave you hanging, but it gives you a reason to check back.

Since there is now medical stuff going on again I will post more frequently.

Thanks for checking in,    Laurie

P.S.  It would be nice if someone would make a comment so that I know anyone is still reading this! Perhaps even Deneen has given up?