So, the other day I coughed up some blood. It’s pretty awesome when that happens. It’s also a pretty great party trick. “Hey, want to see what I can do?”
If you’ve never had the pleasure of trying it out, let me take you through the experience. First, there’s the gurgle – it sort of feels like there’s mouthwash swishing around a particular spot in the lung. Usually the bleed only happens in one lung at a time, so it’s pretty easy to pinpoint where the leak is.
After the gurgle comes the cough. It’s really just kind of a natural reaction at this point, I think. If I feel something weird, I just start to cough.
Next, comes the gag. The cough brings up a lot of stuff with it. So much, that it’s natural to choke on it a little. I mean, that stuff is blocking the windpipe after all, right?
After the gag, it’s the taste. If you aren’t a vampire or a huge fan of Twilight, then I’d be willing to bet you’ve never savored the taste of blood. There’s a very metallic flavor to it. Iron to be exact, with a hint of salt. It’s also warm and quite soft like the inside of chocolate cake.
Finally, there’s the spit. Blood is pretty gooey, so it kind of just slides right out of the mouth and hopefully into a cup. Missing the cup can lead to a disaster. Blood stains. No one likes to see that all over the bed sheets, because oh, yeah… this really only happens in the middle of the night when no one is around to help. You see, I’ve gotten pretty good at this, because I don’t need to have blood all over my bed. Because if I do have all these stains, then basically, if I am trying to have an adult sleepover with some babe that I just picked up at the bar, then I’m striking out before I even get up to bat.
In all seriousness, it actually sucks. My biggest issue with the whole thing is that is tastes really bad. It’s also not something that I love seeing when it does happen. I don’t recommend trying it. Oh, and for those of you keeping score at home, I’m totally fine. 999 out of 1000 times, coughing up blood leads to absolutely nothing. It’s just a matter of making it stop, that’s the important thing. Imagine that… a life where coughing up blood is considered fairly normal.
Now, with all of that in mind, I decided that I should go ahead and list the 13 idiotic things that can totally go wrong in my (or anyone with CF) day.
1. A bleed. Obviously we are starting here, didn’t you just read all that? The strangest time I’ve ever gotten a bleed was during my junior year of college. Florida State played BC in a Thursday night football game on ESPN. Naturally, people who were brilliant, like me, opted against scheduling classes on Fridays, so we went crazy. After tailgating, then 4 hours of adding my voice to the DEAFENING crowd noise that can be heard at BC’s Alumni Stadium, I sprung a leak. BC went on to lose 38-7. It was totally worth it.
2. Waking up without a voice. Coughing is never fun, especially when I do it like 9 million times in a day. Sometimes the old vocal chords want a break. What can I say…. Evidently not too much when I can’t talk.
3. The food baby. People with CF don’t have the best digestive tracts in the whole world. Fat doesn’t get digested properly. It tends to smell. It is what it is. If you think that’s bad, just think about what’s going on inside me. When I wake up in the morning after using the feeding tube, or sometimes after a Thanksgiving size meal, I’ll bloat and it will look like I’m packing a food baby in my stomach. It’s kind of a crazy look. Skinny everywhere, then bang, bloated stomach.
4. Numb fingers. Remember in that one post I said we, people with CF, have alien fingers and toes? Here’s the link in case you don’t remember: https://www.gunnaresiason.com/dont-say-that-to-me. That’s called clubbing. It happens when oxygen doesn’t reach the extremities because… I’m not going to go into that; it’s science, or something. You should know by now that this whole fight is over oxygen. Anyway, when the oxygen doesn’t get to my fingers or toes, that sh*t just goes numb, kind of like when you roll over on top of your arm in the middle of the night and wake up the next morning without the ability to turn off the blaring alarm clock.
5. The oozing hole. Come on, I’ve told you a million times, this isn’t that kind of website. This is for my G-Tube people out there (REPRESENT). We are sort of like the elite of the elite CF patients. We ain’t got time to eat 5000 calories each day, so we just jam that sh*t through the tube. Just kidding, but not really. Either way, the tube kind of leaks sometimes. I have no idea what is leaking out of the wound, but it kind of looks like slime. You can ask the scientists, they’ll tell you exactly what is coming out and what its bodily purpose is. It’s Brown slime, not the green kind that’s featured on Nickelodeon. I guess I could get the wound cauterized and then the problem would be solved, but I’m not trying to get burnt anytime soon. I’ve seen Braveheart – it looks like zero fun.
6. I’m totally covered in it. This is another one for the G-Tube people out there – they will know exactly what I am talking about. I cannot tell you how many times I woken up in the middle of the night thanks to a feeding tube malfunction. There is nothing worse than when the pump disconnects from the port in my stomach. It’s a lost cause from the moment it happens because there’s nothing that can be done until I wake up in a puddle of high calorie formula – which could be hours later. Just like the bleed, this is something that undoubtedly happens at like 4am, so I use the skills I picked up from watching Big Daddy; newspapers clean up everything until the morning.
7. Boot and rally. Typically college freshmen are the ones trying to master this skill when they are at a party for the first time and don’t want to leave. Sadly, this isn’t something I have been able to outgrow since that time in my life. I’ll have you know that this is not very fun, especially after a night attached to a feeding tube. You try swallowing half a cup of pseudomonas and not throw up; it’s a real challenge.
8. Salting. Sometimes we don’t even sweat – we just salt. There is no liquid involved whatsoever, just salt. My dogs love when that happens.
9. Uncontrollable laughter. This is actually a good thing, but it definitely goes under the idiotic category. A friend of mine, Klyn, talks about this in one of her most recent blogs (https://mylifematters508.wordpress.com/2015/09/04/mylifematters-the-movement-continues/), so I wanted to include it. My sister also loves saying that there is nothing better than when someone with CF laughs. Basically it’s just a mixture of laughing, coughing and gagging, which OBVIOUSLY leads to more laughing, because for some reason it just sounds hilarious. Tell me a joke, I’ll show you how funny it is with the amount of sh*t I cough up.
10. Side effects. You know when you’re watching TV with the entire family and then all of a sudden a Viagra or Cialis commercial comes on making everyone in the room feel super awkward? Well at the end of the commercial, they list the side effects of the drug, like if an erection lasts longer than four hours, it’s time to have an even more awkward encounter with the doctor… or something like that. Those things do happen. I’ve never taken Viagra, so I can’t speak to that drug specifically, but I can tell you that I’ve had to take some weird stuff over the years and have dealt with some really strange moments. While the drugs definitely do work (don’t you dare try and convince me that some herb grown in Cambodia is a natural remedy for CF if I rub it all over my body in the shower – grow up), there sometimes can be a price to pay. For example, a drug once made me turn totally red. Another made me turn orange. One totally crazed drug took away my ability to taste things and walk in a straight line – it definitely killed a lot of the bad bacteria, though.
11. Allergic reactions. It’s all fun and games until I go to run an IV med only to feel like a million mosquitos suddenly bit me all at the same time.
12. When mixing meds goes wrong. I cannot tell you how many times I’ve accidentally stuck myself with a syringe mixing medicine. If my life were a real-life portrayal of the movie Outbreak, I would have accidentally given myself that crazy disease within the first five minutes. I wouldn’t have even made it to the credits. I guess I don’t have steady hands. That sh*t hurts too.
13. When a stranger thinks you’re trying to recreate Breaking Bad. This happens more than it should. The best example I have is this: I was in my room mixing IV meds one day my senior year of college in a totally sterile environment. Extra precautions. I had to do it in the common area because I had a better table to work with. I was masked and gloved, and I made my roommates do the same. Aside from the 4 million packets of alcohol wipes, I had 8 syringes on the table, along with eight vials of sterile water, 4 vials of (powdered medicine?) and 8 self-pumping IV bags. To me, everything looked totally organized. To the casual onlooker, it probably looked like I was attempting to create an illegal substance made famous by a show on AMC. One of my roommates neglected to mention that a guy from his class was coming over to study for an exam. Long story short, the kid walked in and hasn’t been the same since. He looked like he had just seen a ghost and said that he wanted no part in what was going on in the room, so he just left. You can call me Walter White.
Here’s the moral of the story, so much dumb sh*t can happen day in and day out with CF. Sometimes I just have to be able to laugh at myself, that’s probably the best part of living with a chronic illness.
