Anatomy of an aspiration.
I’m making this to take my mind off what just happened. If you judge me… just don’t. Most of the pictures were taken actually during this whole process, a couple were taken after to show what had happened before.
So.
[Picture 1.]
I went to sleep with the bipap on. My stomach filled up with fluid. Some of the fluid came up my esophagus. The bipap blew it down my lungs.
[Picture 2]
I woke up. I actually didn’t feel as if I’d been asleep at all, I felt as if I’d just been awake and then suddenly there was a sharp pain in my lungs. This has happened so many times before I didn’t even hesitate, I grabbed my backpack (with the feeding pump) and iPad and went into the bathroom.
[Picture 3]
I hung my backpack off one of the shoes in my shoe rack. That’s what I always do whenever I need to do anything in the bathroom.
[Picture 4]
I spent somewhere between 30 and 45 minutes sitting on the floor, coughing up bile. It tasted bitter and was yellowish. I’ve done it so often I know how not to throw up from the taste. I still taste it all the time and it’s worse whenever I cough
This is where I really got time to think. The past couple days I’ve been getting more and more stomach contents out of my g tube. I don’t know why. Recently I actually got so much out of my stomach in one night that I filled up my burp cup past the word BURP written on it. Which is more than I’ve ever gotten ever. I don’t know why I’m producing so much fluid in my stomach but it’s clearly becoming dangerous. I had fleetingly thought that it might cause aspiration, but I thought I was safe.
When this happens, my main emotion is not fear. It’s irritation. Irritation that this has happened again. Irritation that I might die from an infection before I really got to do a lot of the stuff I intended to do. This is definitely an improvement over the past few months before I got my tube, when I aspirated a couple times a week at least. But it’s still a problem. I have been wondering whether I will need to get something similar to a leg bag, only for my g tube, so that it can safely drain while I’m sleeping and the fluid will go into the bag instead of my lungs. This is now a much higher priority on my list. I would use suction from a syringe to pull it out, except that causes fluid to leak out through a seal in the tube near my skin. And that’s not fun.
As always, there’s the wondering whether this will be the last time. Because I’ve been lucky. The antibiotics have always worked, and I always get them in time. I do get really sick, but so far I’ve survived. And the wondering how severe this particular aspiration was.
For me, this aspiration was maybe moderate. That’s compared to my worst. My worst aspirations I wake up and I can’t breathe at all at first. This one, I woke up and I could breathe, but if I inhaled more than a certain amount I got a sharp pain and had to cough, and then stomach contents would come out. I had hoped maybe it was mild. Maybe it was like the last time where I felt it before the aspiration really started, and was able to get it away from my lungs in time. But no. This was real. I coughed up way too much stuff for it not to be. And while it’s better than severe, any amount of stomach contents in the lungs can be very dangerous and cause bacterial infections or pneumonitis.
I hope I don’t have to go to the hospital this time. I hope my lungs have had a couple months to heal, so it won’t be as bad. I hope a lot of things. But you never know.
The thing is, it all happens so fast. You aspirate. And then you try to cough it out, and if it’s really bad you call 911. And you get used to the routine, you know what to do. You know to call for prophylactic antibiotics the next morning. You know to look for a drop in oxygen levels, changes in phlegm color, and other signs of an infection. You know to do every single one of your nebulizer treatments.
But that doesn’t stop the speed of it all. If you get sick enough, you will be too sick to do all the things you need to do to prepare for if it’s fatal. I’ve gotten so sick from aspiration that I couldn’t even type, much less put my affairs in order. And then you get too sick to care whether everything’s in order. I hope all that doesn’t happen this time. You can often tell how sick you’ll get by how fast the infection starts and what it does. I mean hopefully there will be no infection, or minimal infection, but still.
I want to know why my stomach is making ridiculous amounts of acid. I want to know now. Damn it.
Anyway, I stopped coughing stuff up once I could breathe all the way with neither pain nor urge to cough. I mean I still keep coughing after that, but that’s when I get off the floor and start doing other stuff.
[Picture 5]
This is the wastebasket after I’m done. I’ve gone through about one and a half rolls of toilet paper. By the time everything is over, I’ll have gone through two.
[Picture 6]
I looked at the g tube part of my GJ tube. That’s the half that isn’t connected to a feeding right now. You can see the green fluid in it. That means I should try burping it — letting the air and fluid out into a cup.
[Picture 7]
I put the g tube into the cup, took the cap off, and unclamped it. There was so much in there that it spurted out at high speed, both air and fluid. Lots of fluid.
[Picture 8]
Getting the stuff out of a g tube can be a bit of an art form. I say there for quite a long time, moving the tube in and out of my gut slightly, moving my body around to move the fluid in my stomach around, swallowing to make my stomach move more, pressing on my stomach, things like that. And more came out of there than has almost ever come out at once. Last night is the only time I’ve gotten more than this.
[Picture 9]
This is the amount of fluid I got out of my stomach, in the burp cup. After I took this picture, I spent awhile dumping the cup into the toilet and washing it out.
[Picture 10]
And now I am back in bed. I’m writing this. And I’m wondering about everything. There’s this sense of unreality sometimes, like this couldn’t possibly be that dangerous, it’s happened so many times. Except it’s more like I’ve dodged the bullet a ton of times. I’m not trying to be dramatic or anything, it’s just it’s actually like this. If you get stomach acid and bile in your lungs, you get bacteria in your lungs, you can get infected, you can die of pneumonia. I’ve been hospitalized and sent to the emergency room many times before over this. It’s a huge huge deal, no matter how many times it happens.
I think the people around me get complacent. They think if I’ve survived this many times I’ll survive every time. But it doesn’t work like that. I’ve known for awhile that this could happen at any time, any night, any time I use the bipap, even sometimes when I don’t. I’ve know that any time it happens, I’m at risk of dying. This is what I meant when I said I could die at any time, that I’m not terminally ill but I am precariously ill. My gastroparesis prevents my stomach from emptying fluids as quickly as most people, so they build up and this happens.
The GJ tube prevents it happening as often, but it doesn’t prevent it from happening, especially with as much stomach acid as I’ve had the past couple days. Or whatever that stuff is. It comes out almost a deep orange color sometimes. Supposedly that’s okay. I don’t know. I worry about all kinds of possibilities that probably aren’t happening. But anyway. The GJ tube doesn’t prevent it entirely. It makes it so I’m not putting more into my stomach, which helps. It makes it so I can drain my stomach contents, which helps. But it is hard to drain stomach contents in your sleep. But now I’m determined to get a bag for it, so I can drain it more easily. Tonight, I may suck it up and use suction (pun not intended), tying something around the tube to absorb the leakage. Because I really badly need to be able to get my stomach empty.
But this time, to take my mind off things, I want to document what exactly happens. I want you to know what it’s like. You can’t know all the thoughts that race through my head, though, the ones where I hope I’ve done enough, been enough, in case my luck runs out. This happens often enough I can’t take being alive for granted. I just can’t.
Damn it I wish I could meet Anne. Not intended as pressure. Just one of those thoughts that goes through my head when this happens. Now my lungs hurt. I didn’t notice that before. They sort of burn, especially when I try to breathe. I hate aspirating. And I wish my stomach would stop trying to assassinate me.
GAH. I was wondering what was going on. :/ I had been meaning to say…this is definitely the sort of thing that your doctors should be able to answer questions about. I mean the lots of fluid building up thing. Because it is scary and doesn’t seem like something you should just have to put up with. And I am going to post this because I am worried to the point where my hands and eyes are going fuzzy right now.
