CPAP Journal, Day 152

I've had somewhat of a backslide in my health in the last month. After my last entry, I was feeling the same symptoms from before, only much stronger. Any exertion of any kind would send my heart racing. Even getting up out of a chair would leave me panting for breath. Lying down on my back would give me the sensation that something heavy was on my chest, impeding my heartbeat. In a nutshell, I was beyond worried.

I set up an appointment with a cardiologist who was referred to me through Swedish Edmonds Hospital. It turns out that Dr. McCoy, who I had seen several times recently, was actually a pulmonologist, which is a doctor who specializes in lungs.

Whoops.

In the meantime, my feet had swollen up like massive bratwursts in the interim, and even wrapping one up in a compression bandage didn't do much. So in the meantime, I went to the urgent care center here in Lynnwood. (It turns out my regular doctor's office is converting to urgent care, and the last few times I had been there were not comforting. I need a new doc.)

They did an EKG on me and listened to my heart; the PA who took a look at me told me I should go to the hospital and check myself into the ER. Immediately.

I really do NOT want to go to the ER again. Last time, I spent three days in the hospital. It sucked. So I told the PA that I would see the cardiologist, and take his advice. If he told me to go to the ER, I would do so. But in the meantime, at my request, they gave me prescriptions for the same medications I was on when I got out of the hospital last year: Metoprolol, Lisinopril and Lasix.

Those medications helped out a lot. Over the next five days, I lost twelve pounds...all through the bladder. I must have had a lot of fluid retention due to this atrial fibrillation. My feet are now back down to normal; so is my weight. A few days later, I had my appointment with Dr. Stanley. The really good news: I don't have to check into the hospital or go to the ER. The meds are working.

It turns out that the symptoms were caused by a multivitamin I had started taking recently, which had Vitamin K in it. That interacted poorly with the Warfarin I have been on since July. Pro tip: if you're taking blood thinners, avoid vitamins with a clotting agent.

So, a minor tweak of my dosage later, I am feeling a great deal better. Additionally, I finally got a new CPAP mask. I'm still not used to it; I think I need to ease into the transition from one mask to another. I better get used to the new one, though. This existing mask sometimes has a weird vibrotto created by air passing through the hole torn in the rubber. It's hard to go to sleep when it feels like your nose is getting a text message on silent mode.

I also have another appointment with Dr. Stanley the day after tomorrow. It turns out nobody bothered to tell me that I am supposed to get my blood tested monthly, now that I am on Warfarin. Who knew?

I am really looking forward to being back to my old self. When I am healthy enough, I desperately want to go hashing again with my friends, the Seattle Hash House Harriers. (We're a drinking club with a running problem.) Too bad I can't run and shouldn't drink at the moment.

But here's hoping I am off the disabled list again before my next birthday!

CPAP Journal, Day 124

It has been a long time since I posted in this journal, because very little has changed. I do sleep a lot better with my CPAP on than I do without; I went down to Vancouver to visit my folks this weekend, and had trouble sleeping without the familiar feeling and the reassuring amount of oxygen it pumps in constantly.

I can't believe it, I actually have gotten used to this device.

I do have one quibble, though. Tonight, I can't sleep. There is a little hole in the rubber of the nasal mask, and it is causing a loud whoosh of air, constantly blowing from the mask. And whoever designed this thing was insidious. This rubber is the one substance on Earth I've found that duct tape and Super Glue will not stick to. It is completely un-patchable.

So I can't repair the mask, and it's too late in the night to go buy a replacement. What does that mean? It means I get to tire myself out until I don't hear the whoosh any more, and then try to sleep. I'm going to be tired as hell at work tomorrow.

The good news is, I saw Dr. McCoy a couple of months ago, and he took a look at the readout from the data card in my CPAP. He's very happy with the results, and the time I've been spending hooked up to the machine. He's so happy, he says I don't need to see him for another three years.

This is a huge step forward for my health. It looks like the treatment I've been getting and the Warfarin I've been taking are doing the job right. Now if only the equipment wasn't designed to break down easily and be impossible to fix...

CPAP Journal, Day 18

Very little has changed in my reaction to the CPAP machine, except for the fact that I feel less like Darth Vader and more like Bane from The Dark Knight Rises. I have even taken to saying a quote or two from the movie when I pull the mask on at night.

"When Gotham is...ashes...then you will have my permission to die."

I do get a little annoyed when the humidifier part of the machine ends up causing a small pool of water to collect during the day, condensed from the previous night's vapor. I have taken to keeping a washcloth on hand in order to soak up any drips that come loose when I turn it on upon going to bed. A cold and wet face is not conducive to a good night's sleep.

I am still only wearing the CPAP roughly half to two-thirds of the night, as I will get up, use the restroom, go back to bed and fall asleep before reaching for the mask. If only I could fall asleep this easily when I first go to bed.

One problem with the fit of my mask is that it is not completely airtight, as my beard and mustache get in the way. (I am told this is why police officers and firefighters don't grow beards, as it prevents an airtight seal around a gas mask.) The hissing sound and cold breeze from a leaky seal can be distracting, so I try to make sure it is firmly secured to my face.

Also, now that I have been using this machine for so long, I wonder why nobody in the hospital just told me to close my mouth and breathe through my nose? That is what caused the machine to fight against my breath, and what gave me the nightmares about being a rat in a maze. It was so easily solved; why didn't they just say so?

Fortunately, the whirring noise of the CPAP is just enough white noise to help me fall asleep, and I don't need to keep a fan running by my bedside any more. I wonder how long it will take before I am able to go a full night asleep with this mask on my face, without taking it off. But hey, I've made it nearly three weeks now, and I haven't thrown this thing out a window yet. Maybe there's hope after all.

CPAP Journal, Day 5

It's been almost a week, and I am still hooking myself up to the CPAP every night. I'm honestly surprised I have been able to fall asleep with the nasal mask on. I have had to teach myself to sleep with my mouth closed. This is a big change for me, as I normally have slept with my mouth open. (I'm a snorer. Ladies.)

However, I have been able to keep my mouth closed in my sleep, and keep a steady, deep breath through my nose while the mask is on. Fortunately, the calibration that was done is giving me sufficient air that I don't feel suffocated. That is a huge relief. The last thing I need is a panic attack in the middle of the night.

I was worried that there may be a leak, as I would feel cold air coming out the front at a steady pace. However, I was happy to see that the mask is designed to release air out of specially drilled holes in the front, and it was not an issue of a bad connection or a leaky hose.

I am using the machine about half to 2/3 of each night. Usually at about 2:30 to 3:00 in the morning, I get up briefly, go back to bed, and fall asleep without the mask on. I wish falling asleep at the beginning of the night was as easy as falling back asleep in the middle of the night. I know that I should use the CPAP for the full night, but I'm not quite that comfortable with it yet.

So far, my heart seems to be recovering slowly. I don't have a racing heartbeat any more, but I do still easily get winded going up stairs and hills. Dr. McCoy cleared me to go on runs with the Hash House Harriers again, and I went on the Brain City Zombie Hash yesterday. I was still gasping and panting like an obscene phone call on every uphill incline. I still had to take multiple stops to catch my breath. But, I can finally hash again! It's good to be back, but I was really sore today. It's a sad state of affairs when I go out running and drinking, and the next day, I feel more ill effects from the running than I do from the drinking.

I hope that I will really get used to the machine, which everyone keeps telling me will happen gradually. I'm relieved that it is not as cumbersome as I had feared, and it seems to be getting easier to use. I seem to be feeling a little more refreshed in the mornings, for the most part. So who knows? Maybe the machine really is doing its work. I promise I'll keep folks posted as to my progress as it happens.

CPAP Journal, Day 1

Well, last night was my first with the CPAP machine. I was able to get some sleep,with a few minor hitches. The mask seems to form a tight enough seal around my nose for the most part, which is a relief. I found out when I got the machine calibrated yesterday that my insurance has a deductible between $500 and $1300, depending on where I go for supplies. It just makes you feel all warm and fuzzy about the Health Care system in America.

So first of all, big thanks are due to my father, who gave me the CPAP machine, which I would never be able to afford on my own. Thanks, Dad. I love you.

Now, back to last night. I took a sleeping pill beforehand, because I figured I may need the extra help to fall asleep the first time using this thing. I was able to fall asleep in about the same amount of time it takes me on a normal night. Adjusting the mask to my face seems easy enough; the straps move easily and the Velcro keeps them in place. However, the first time I woke up, I found that my teeth were clamped together tightly, in some subconscious effort to make sure I breathed only through the mask.

Of course, I did wake up 3 or 4 times in the night, which is about par for the course. No bad dreams this time, but I fell asleep at about 2:30 in the morning without putting the mask back on after a trip to the restroom and slept the rest of the night without it.

I guess the machine's whirring works as white noise, just like the fan I had used previously but had to unplug to make room for the CPAP. Fortunately, the machine comes with a humidifier reservoir, so I was not dried out by using it like I was in the hospital. I can sleep comfortably enough on my back or my left side, but sleeping on my right is awkward with the hose stretched across my body.

I would say that my first night with a CPAP mask was about as good as an average night's sleep. It was definitely not nearly as bad as I dreaded; no panic attacks or nightmares about being a rat in a maze. There are a few kinks to work out, but the final result was far better than I expected. A number of my friends tell me that I'll get used to the machine inside of a month, and will come to rely on it to provide a good night's sleep. I hope they're right. I'm going to try going to bed without a sleeping pill tonight. Let's say I'm...cautiously optimistic.

CPAP Journal, Day 0

Crap, I am really not looking forward to this.

I just got my CPAP machine calibrated today; looks like tonight is going to be my first night hooked up to this damnable thing. In case you can't tell, I am not happy about having to use a CPAP to treat my sleep apnea.

But let's go back a bit first. About 3 months ago, I was suffering from some unusual symptoms. I was always short of breath whenever I would go up hills or stairs, but I chalked that up to my weight. The skin on my right hand was suddenly chapped all the time, when my hands had always been soft before. Strangest of all was the swelling in my ankles and shins. They seemed to be puffed up like overinflated balloons. The swollen flesh had the consistency of clay; if I pressed my thumb into it, the dent would remain when I took my hand away.

So one day in the middle of July, on the drive into work, my heart felt like it was racing. I told Lindsay about it, and she said I should get checked out in the Help Center at work. (Lindsay is a friend and co-worker of mine. We live across the street from each other, and carpool to the office.) I went into the Help Center, and they listened to my heart. The doctor said I had an irregular heartbeat, and he told me that he was going to call my regular health care provider and have me go there for a checkup. When he called, they told him that I should check myself into the hospital.

Wait, what? The hospital? For some shortness of breath and a quick heartbeat? So I called upstairs, told my manager I wouldn't be in today, and went to Swedish Edmonds. Next thing I know, I am hooked up to an IV and being told that they are keeping me overnight for observation.

Long story short, staying in the hospital sucks. I spent three days in there, getting poked and prodded. My fluid intake was limited to 2 liters a day. (That was a pain, as I am always thirsty.) The first night, I felt like I wasn't getting any oxygen, no matter how deep I breathed. That led to a mini-panic of doctors and nurses in my room. I must have been sedated, because the next thing I remember was a nightmare about being a rat in a maze, forced to undergo tests and experiments to check my responsiveness to various stimuli.

That dream was quickly explained when I woke to find myself in a different room, hooked up to a breathing device that felt like I was French-kissing a vacuum cleaner. Additionally, while I was out, someone had taken the liberty of installing a catheter. That, I really could have done without. Freaking OW.

According to my cardiologist, I have sleep apnea. That's not a big surprise, as it runs in my family. My brother and my father have both been diagnosed with the same. In this case, the lack of oxygen caused damage to my heart, weakening the part that regulates a normal pulse. As a result, the part that kicks in when you're running a marathon had to take over, resulting in an atrial fibrillation. The doctor says that with proper medication and treatment, my heart can be back to 100% inside of six months. However, I will have to use a CPAP machine when I sleep, to ensure that enough oxygen is getting to my lungs.

Which brings me to today. Dad gave me a CPAP he already had, and I got it calibrated at the hospital this afternoon, to match the setting they used when I did a sleep study last month. And the truth of it is...

I hate this Goddamned thing.

I have tried the mask on, and it looks dorky as hell. I look like a third-rate Darth Vader knockoff. It feels clunky and awkward, and the first time I tried it, I damn near had a panic attack. The machine they used on me during the sleep study made me feel like I wasn't getting any air at all, and I feel like a freaking invalid hooked up to an oxygen tank. I hate feeling this helpless, and I hate it more when I realize I'm going to have to use this horrendous thing, or one like it, every night for the rest of my life.

What's going to happen when (or if) I get into a relationship with someone, and tell her that I have to sleep hooked up to a friggin' briefcase with a mask over my nose? Who's going to want to sleep next to a whirring geek machine? Hell, how am I going to sleep with this thing on? I have enough trouble falling asleep as it is; now I have to add this 10-pound, black plastic albatross into the equation?

This sucks. It really, really sucks.

People keep telling me that I'll get used to the machine. I can't see how. It's going to feel like I'm wearing a ball and chain, attached to my face, while I'm trying (and failing) to fall asleep.

So I decided to start writing in this journal, in order to express my thoughts about the whole damn mess. This should help me see if I actually am making progress, as well as allow me to vent my frustrations without annoying people around me. My friends and family are, of course, welcome to read this journal to see how I am coping with this challenge (modern double-speak for pain in the ass,) and I hope that I can find the experience informative enough that I can learn from it.

Man, trying to sleep tonight is going to SUCK.