Drowning without Water


pulseThink of yourself in a swimming pool or a lake, the water warm against your skin, and the sun is shining. Life is good. You’re enjoying a swim, and you decide to dive. Somewhere along the way, you lose your orientation, you’re deeper than you thought you were and you didn’t take a deep enough breath to comfortably swim to the open surface of the water. You finally get oriented, and you feel your pulse quicken, your panic is starting to set in. You swim forcefully toward what you hope is the right direction. At some point, your lungs begin to burn, to throb with intensity in time with your heartbeat and the longer you stay underwater, the harder that throb becomes and the faster too. You see the light, you realize you’re almost there, but before you break through the top of the water, your lungs now feel like they are on fire, your mouth is fighting not to open automatically and take in a huge gulp of water instead of air, you’re straining, moaning against the involuntary movements your body is trying to make to force you to breathe, not realizing you’re underwater though your brain is fully aware and that’s why you’re panicking so.

And then, at last, you break through the surface with a huge splash and the first thing you do is actually not breathe in… believe it or not, you exhaled rapidly, like you’re trying to clear every last bit of air out of your body so that when you take that next breath, the next big breath that will calm the panic, easy the pain you’re now feeling in your chest, stop the throbbing that has begun in your head and bring your vision back to you… so that you will get every breath, every ounce of oxygen, that your body needs. That’s when you gasp, and then you start breathing rapidly, hyperventilating yourself, gulping in air like a starving person who hasn’t eaten in months, drinking in the water like a dehydrated man wandering in the dessert might drink from an oasis.

Your arms flail. Your breath comes rapidly but in full, big gulps, you pant, you moan, you gasp. Slowly, the burning subsides. Slowly, painfully slowly, the pain subsides. The throbbing slows, and within a few minutes, you’re back to normal for you, only absolutely, completely exhausted, worn out, tired from the fighting just to do something that for nearly everyone comes so easily:


Most people have probably experienced this at one time or another, to varying degrees, if you’ve ever swam in any body of water of any size. I know I have, especially when I was a kid.

But these days, this is how I feel, living with CTEPH, every time I get up just to go to the bathroom and walk back to my chair. This is, to a lesser degree, how I feel when I just roll over in bed. Walking out to the car to go to a doctor’s appointment takes so much energy, it takes about 4 minutes just to get my breath back, and then it zaps so much energy from me, all I want to do is lie down and sleep. It’s like being a fish, flopping around in the bucket, sucking gills in and gasping over and over again for breath. It’s panic inducing.

That picture above? That’s my pulse ox meter. It measure the amount of oxygen % in my blood at any given time. When I get up and move around, I monitor my sats (meaning saturation of oxygen in my blood–sats), because, when the panic hits me when my sats drop, I can watch the numbers on the pulse ox monitor. When my breath first starts to fail, when the pain first starts to build, I can watch the sats go down while the heartrate goes up. Then, once I’m sitting still again, I can watch my sats go back up and my pulse go back down.

I’ve learned from doing this that anything below 93% makes me drowsy and makes my eyes water (don’t know why). Anything below 90% makes me tired and I start to feel achy and a little breathless, like I can’t get enough air in when I breathe (think about how you feel when you’re stuff after a huge meal and you’re tired and can’t take in a deep breath–feels sort of like that). When it gets to 87%, my chest starts to burn. Anything below 85% starts to hurt, 81-82% is pretty common for a quick trip about 20 feet away just to go to the bathroom. Coming back is usually worse than going there, because I’m still recovering from having walked the first way there. Anything in the 70%s is cause for major panic in me–it not only is panic inducing, it freaking hurts. My chest feels like it’s on fire. The veins in my neck will distend and throb. I get super hot and sweaty very quickly, my vision will grey out and I will be gasping for breath.

My heart rate coincides with the breathing. The faster my heart is beating, the lower my sats are, or vice versa. Anything over 120-125 on my heartrate and my sats are likely not good at all. I take a medication that helps control my heartrate now, so that my heart doesn’t freak out and overcompensate for the hypertension that exists inside the pulmonary artery. Before this medication, a heartrate around 200 upon exertion was not uncommon. Now, I only very rarely get up to 145 or so, and that’s on bad days. This has helped me considerably with the panic and pain. Usually, as my sats go back up, my heartrate comes back down. Once my heartrate drops below 100, I know my sats will soon be over 90 again. Once my heartrate is back in the 70s, I’m almost normal again on my sats.

But the pain in my chest is always there. constant, dull, achy, behind everything else I feel, always reminding me that I am not normal, won’t ever be, and that I’m limited. My activities are limited.

Me with my cannual and bug glasses.

Me with my cannula and bug glasses.

And I’m lucky right now. When I sit still and don’t move, don’t exert myself, my heartrate is actually low and my sats (while on oxygen) are normal or near normal. As long as I don’t move, eat too much, laugh too hard or fall asleep, my sats will stay mostly normal. When I’m not moving around, I wear an oxygen cannula, with an oxygen flow rate of 2 liters per minute. When I’m up moving around the house, for short bursts, I wear it at 5 liters per minute. And when I have to walk anything more than to the bathroom and back, I wear it at 8 liters per minute, until my sats come back down. At night, when I’m sleeping, I wear it at 5 liters per minute.

I never get to take it off. I wear it when I cook, clean, kiss my loved ones (yes, sometimes it falls off and they literally take my breath away!), when I eat, when I take a shower, whenever, whatever I do, I’m wearing my oxygen cannula. Like some people wear glasses or hearing aids, I wear my oxygen cannula. I don’t mind it too much, and considering how much better it makes me feel, it’s worth it. If I’m just sitting around, I don’t really even notice I have it on any more (of course, I do have a perforated septum–I could so rock a nosering right now if I wanted to! [ don’t worry, I don’t want to! LOL])

For another example of what this is like for me every day, considering I’m on lasix and have to pee at least once per hour, and usually more frequently than that, I offer you this: For just one day, I want you to get up and get dressed, then go into your living room. Work on your computer, check email, visit with your family, but every 30  minutes, I want you to get up and go run around the block one time, as fast as you can, without stopping, then come back in and sit down at your chair, catch your breath, then start working on your computer again. Do that every half hour for the first six hours of your day an then once per hour for the next six hours of your day, and then you can go to bed.

That’s what my body goes through, vaguely equivalent, every single day while living with both congestive heart failure and CTEPH–with only one small problem that makes a world of difference: If you are reasonable healthy, doing this every day will eventually make you stronger. For me, every time my heartrate goes out of control, every time my oxygen levels desat, I’m a little bit closer to my heart failing for good… you doing this will get stronger and stronger, but my doing this will cause me to get weaker and weaker.

The good news is, my CTEPH was caught so early and the congestive heart failure that it’s causing is very mild in many aspects right now, so I have longer than most do before I have to worry about those things.

In the meantime, it sure can wear a girl out. I love to swim, but nearly drowning multiple times per day, without any water, isn’t all that much fun.

Thanks for letting me share a little glimpse into one of the aspects of living inside my body every day.

Love and stuff,




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One Response to “Drowning without Water”

  1. Peggy West says:

    I wish that I could take this illness away from you and throw it in the nearest garbage can. I have a serious, chronic illness, too, and, like anyone who has one, I know what it is to live every minute with it. I count steps, calculate the height of stairs, and do all kinds of shenanigans to reach things. But I am not alone because you, Michelle, live with a major illness, too, plus good old Michael J. Fox, the actor with Parkinsons, has his own tv show. We are the unafraid.

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