S is for Sleep


In the process of all the medical testing that was done on me, my doctors also sent me in to have a sleep study done. They believe that I have a sleep disorder of some sort–and with that, I am not disagreeing either–and that the sleep disorder is likely part of the cause of the problems I’ve been having–my body isn’t regulating properly, endocrine system out of whack, hormones out of whack, etc., and pulmonary hypertension is known sometimes to be caused by sleep apnea, and of course, it can worsen pulmonary hypertension too. So they sent me to have a sleep study. I went, I guess it was about two years ago now, and I was diagnosed with mild sleep apnea. Not many apnic events–only five the entire night–but I had multiple instances of hypoxia (oxygen saturation levels dropping low). Well, that’s normal for me, even when I’m awake, so it’s really hard to call that sleep apnea, when it happens when I’m awake. Would we call that ‘wake apnea’? Nah, they just call it pulmonary hypertension.

Anyway, I know the docs are grasping at straws and looking for reasons. Hell, truth be known, they’d rather find out my PH is caused by sleep apnea than CTEPH, ’cause, well, CTEPH is usually terminal and sleep apnea rarely is. One is treatable, the other, not so much.

I’d be very happy if sleep apnea were the answer to all my problems.

But it’s not. We sort of know that. But the docs in my pulmonology clinic all are very optimistic. I’ve beaten so many odds, I really should be dead, and I’m not–and somehow, that truly amazes them. They are constantly telling me how good I’m doing, how proud they are of me for all the hard work I’ve done to keep my health as good as I can. I think sometimes they are amazed at how well I am doing, all things considered.

I love my pulmonology team. A lot. But one thing that bugs me about them is their insistence on the diagnosis of sleep apnea and that the CPAP is going to fix everything right up for me. They are pushing this CPAP so hard on me, but I have documented on more than one occasion, along with at their sleep clinic for my second sleep study, that I cannot breathe when I have the CPAP on.

In a way, it’s comical. I have no symptoms of sleep apnea–none of them. I don’t snore. I don’t wake up at night gasping for breath. I don’t wake up multiple times in the night because I can’t breathe. I don’t have excessive daytime sleepiness. I don’t have the personality changes that go along with sleep apnea. None of it.

My ex, Mike, had horrible sleep apnea. He would snore so loudly, and then, stop breathing for seconds at a time–and sometimes, long seconds at a time–and it was a little scary. Buffy also has sleep apnea. When she’s on her back, it’s worse, and when she wakes up, wild-eyed and panicky looking, unable to breathe, and then doesn’t remember any of it… and I loved her way of putting it, “I was dying by inches…”

That is what sleep apnea does to people.

But I don’t have any of those issues. Trust me, I sleep during the day, at night, and I’m almost never sleeping alone–other people, multiple other people–have watched me sleep. Nobody has ever said I gasp, stop breathing, or even snore… I don’t have sleep apnea or any of the symptoms of it.

Then, I put on the CPAP as prescribed, wear it for the night, and what happens?

I wake up multiple times during the night, gasping for breath and panicky. I wake up cranky, irritable and in a lot of pain. I’ve even gone so far as to sleep walk when I’ve been trying to use the CPAP and not remembering any of it. For example, one night, after the third night of trying to sleep with the CPAP, I woke up, disconnected the CPAP, disconnected my oxygen tubing from the CPAP, reconnected my oxygen tubing to the cannula and put the cannula back on… and woke the next morning and did not remember doing any of that. In fact, it wasn’t until I’d been up for about an hour that I asked folks in my house if anyone had put my oxygen on for me (thinking I had thrown off the CPAP and someone had given me the oxygen) but none of them had done it… I had done this all in my sleep.

The day after wearing the CPAP mask, I’m miserable, every time. I can’t breathe out against the incoming flow of the air in the mask. This, I’ve read in forums and such, is common for people with pulmonary hypertension. In fact, most people with PH can’t tolerate CPAP and instead have to use BiPAP, which cuts off the flow on exhale. I’ve asked multiple times about using BiPAP instead, and my docs are insistent that CPAP is the way to go and that I will ‘adjust’ to it. I’ve tried and tried to tell them I won’t adjust to it. They think this is because I don’t like the mask or am uncomfortable wearing the mask, but that’s not it. When I was first diagnosed with the PH, I had to wear an oxygen mask at night. I didn’t particularly LIKE the mask, but it made me FEEL better, so I wore that sucker. For days, I wore that mask, before I was finally admitted to the hospital, because it made me FEEL better.

When something makes me feel better, even when it’s not convenient or comfortable, I use it! CPAP doesn’t make me feel better. It makes me feel WORSE. I don’t like to intentionally do things to myself that make me feel worse.

I don’t know why the docs won’t listen to me on this, why they are being so stubborn about this. I realize that the typical patient does adjust, but I’m willing to do what they say–just as long as it doesn’t make me miserable and their instructions make sense.

So without the CPAP I have no symptoms of sleep apnea; with the CPAP, I have ALL the symptoms of sleep apnea–which do you think I’m going to go by?

Which brings me to another point: When did doctors quit trying to make a patient FEEL better?

If you learn one thing from reading my blogs, just one, I want to share with you what I learned from reading someone else’s blog… something that has stayed with me for a long time now, ever since I read it. I take her words with me to every doctor’s appointment, because they keep me strong. Actually, I learned two things from her–let me start with the first one, then I’ll get to the one you should take with you.

The first thing I learned from her blog was this: Fat isn’t supposed to hurt.

Sure, we all know that being overweight can cause some health problems, and that knees, ankles, hips, back, etc, can all cause pain–but JUST being fat doesn’t make you hurt. FAT itself doesn’t hurt. If you’re aching, in pain, miserable, can’t find a reason for it–don’t let your doctors fool you into thinking that dropping a few pounds is the cure. Fat isn’t supposed to hurt–if it does, then you’ve got a medical condition and you need to find a doctor who will listen to you and discover what it is. And that very condition could be what’s making you fat in the first place!

Okay, now… the one thing I want you to take with you: Find a doctor who makes you FEEL better, not one who just makes your lab tests look normal.

I’m going to repeat that, because it’s really important and you need to keep it in your head: FIND A DOCTOR WHO MAKES YOUR FEEL BETTER, NOT ONE WHO JUST MAKES YOUR LAB TESTS LOOK NORMAL.

There are so many reasons for this, but for the sake of brevity (too late, I know), let’s just look at the simple ones: ‘normal’ isn’t always normal for everyone–for example, as a heart failure patient, my normal BNP is different than yours is if you’re not a heart failure patient. I take steroids and diuretics, so that makes my lab results off. My PT/INRs will always be off, because I’m on blood thinners. So ‘normal’ on a lab test doesn’t always mean normal for you. You need a doc who knows that and knows why. Secondly, it doesn’t matter if a lab test says X shouldn’t hurt–if X hurts, there’s a reason, and it’s his job to find out why. If every lab tests says you’re fine, then tell the doctor to do another test, take another look, or dig deeper at things that lab tests can’t confirm. There are tons of illnesses that can’t be diagnosed by lab tests alone and show nothing on ordinary lab results.

Lab tests should be used for two things and two things only: 1) to confirm the diagnosis of a suspected disease/illness/condition and 2) to track progress of the treatment of a diagnosed disease/illness/condition. Sure, sometimes lab work is done on a regular basis for a check up or whatever to ‘screen’ for problems, but in reality, this is just a subset of #1, diagnosing a condition. These are the only two things lab tests should be used to do. Don’t let a doctor tell you that what you feel isn’t real, just because he doesn’t have a box to check on a lab form to test for it.

Find a doctor who makes you feel better… a lab result means nothing when you’re still in pain, still scared, still tired, still… whatever. Find a doctor who makes you FEEL better.

In the meantime, know that sleep is so crucial, so vitally important to your health, and that I know a lot of my problems and exacerbation are because I’m sometimes an idjit and I don’t sleep like I should. I know I feel better when I sleep like I should, my body reacts better, my medications work better when I sleep like I should. And I write all of this to you at 5:45 in the morning, after having been up all night.

That’s the ‘idjit’ part, in case you were wondering.

Sleep sweet, my friends, and sweet dreams.

Love and stuff,


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