Going In For Repairs

The truth of the matter is that I just don’t have time to be sick, or I guess sicker than normal. Between working at the BEF, coaching, trying to have a social life and a million other things I have going on day to day, there’s just no left over time to deal with being sick. Unfortunately, as with any chronic illness, there’s really no choice in the matter.

Things were going pretty good for a while, but my CF popped up the other day, probably just to remind me that it was there. I woke up with a pretty nasty cough this past weekend. Who knows where it came from – my guess is the bacteria in my lungs, but what do I know.

For me, it’s pretty easy to tell when my health is about to go bad. First, the texture of my lovely green mucus changes. Normally, it’s thin, the way snot is probably supposed to taste and feel. When I’m not feeling so hot, like this past week, my mucus feels like yogurt. It tastes like **** too. Next, I might see a little blood mixed in with my mucus. That tastes pretty terrible also. Think of having a brick of iron in your mouth, but red, and not solid. Thankfully that doesn’t always happen, and didn’t happen during this flare up, but it’s definitely a sign things are going downhill pretty quickly. This time around, though, fatigue set in pretty quickly followed by my loss of appetite. Those are the, “time to get help” signs. I can deal with the mucus tasting bad and the inevitable increase in my awesome sounding cough, but feeling tired 24/7 is no fun. That’s where I draw the line.

Of course this all happened a week before high school football preseason starts up here in New York. So, it was decision-making time. Either try and fight it the old-fashioned way, you know, by letting my body take care of the job or call in the heavy hitter, the PICC line. As Darwin has taught us all (or so he thinks), only the fittest are going to survive, so modern science takes over where my body leaves off just about every time something like this happens.

The need for a PICC this time around probably wasn’t completely dire, but it made sense. In the CF world, especially at my age, we go for tune ups, or clean outs. Think of it like changing a car’s oil – a car can only go so far before getting serviced. I can only go so far before needing a little boost.

I went in Monday for a PICC placement, which is where I got the great selfie at the top of the post. It takes about 20 minutes to get the whole thing done and stitched into my skin. I realize I’ve now said “PICC” three times without actually explaining it, so for those who don’t know what a PICC line is; it’s essentially a longer, more permanent IV. Like I said, I get mine stitched in place. In first or second grade, I nearly had one fall out of my arm during a course of antibiotics, so I have decided to play it on the safer side ever since that little issue. This time around, the line is 40 cm long. It looks like a little worm when it gets pulled out. Or, I guess a long worm, because what worm is 40 cm long?

Here’s a fun fact about me: I used to do this weird thing when I was younger where I would keep all of my pulled PICC lines. I don’t really have much more to say about that, other than I used to have a little plastic bag full of PICC lines until my mom threw them out a few years ago. It was totally weird and gross. I guess I sort of felt like it was the equivalent of someone keeping his or her tonsils in a jar after getting them removed or something. Looking back, I now realize that I wasn’t even in the same ballpark.

Either way, the line is in now, and I went home to start antibiotics right after it was placed. I know some CF patients find it easier to stay in the hospital for a course of IVs, but that’s just not my style. I have always done home IV courses, with very few exceptions, and even then, to this point, I have only ever been hospitalized for a few nights at a time. Knock on wood. As far as I am concerned, I have a life to live, even if I am feeling sick. If I am feeling well enough to stand on my own two feet and walk around without any help, then I can do whatever the hell I want to do. I have a busy few weeks coming up, so I don’t have time to be sitting in a hospital bed. I have a few remaining responsibilities at the foundation this summer, football starts on Sunday night and then Hockey in two weeks. I don’t have a problem coaching, or even skating with a PICC line in. When it comes down to it, it’s just another little tube in my body. I already have one in my stomach, so it isn’t anything new. In fact, it looks like I’m connected to the Matrix or something when I am sleeping. I get totally wrapped up in all the tubes.

My prescribed antibiotics obviously change from course to course, but I typically spend around six hours a day hooked up to IV meds or fluids. That’s on top of the three hours I already spend doing my normal treatments, so it’s very much a full day process. I end up having to stay up late every night to finish a med and then get up early in the morning to keep the process on a timed schedule. Sleep is a little difficult to come by, but whatever. My mom doesn’t love how I sometimes handle it because I don’t sleep a whole lot, but if I feel like I really need some help with doing early morning or late night infusions, I’ll ask for it. With that being said, I have gotten to the point where I don’t really like asking for help with the PICC. I feel a little more independent when the PICC line works on my schedule. Come to think of it, my dad has accidentally pulled the cap off of it a few times, so he has lost his IV privileges all together. It’s okay, though, I probably wouldn’t be able to see the cap either if I was old and my eyes were starting to go.

In all fairness, my mom is the one who taught me how to keep a tight schedule, so I think I’ve really learned from the best. We have it down to a science. As soon as I start one infusion, everything, from the flushes, to the alcohol pads, to the next med, gets prepared for the subsequent infusion. Preparation makes everything easier in the long run.

I realize I am talking about this like it’s nothing, because for me, someone who has had like a million PICC lines, it really is nothing, but truly, the entire process must be sterile and very controlled. Whenever I am infusing, I move through the progressions very slowly and methodically. The end of the PICC line itself is right next to my heart, so God forbid the line got infected, or something went wrong during an infusion, disaster could strike in a heart beat (see what I did there?). Safety is my primary concern when I deal with the PICC, so I take nothing for granted. I have never once felt like I have put myself into any sort of danger. My golden rule is that if there is any question as to what I am doing, I close the line, wash my hands and start over. My time is valuable, but going into cardiac arrest isn’t on my list of things to do, so I can spare a few extra minutes here or there.

Dealing with a PICC line is very easy, though. In college, I used to infuse in the middle of class. The home healthcare service that covers me has these great little self-pump IV bags that are super tiny, so I could be sitting right next to you, infusing, and you would never know. I’m sure there were a few people that may have gotten a look at me during school and thought I was some sort of druggie, but whatever, I could hardly careless. I was getting the good stuff. I needed it to survive. People can think whatever the hell they want – it doesn’t bother me, it never has. I have even brought a PICC line with me on college spring break one year. That’s a story for another time, but I did it, and everything worked out totally fine.

In all seriousness though, next week during football preseason, I’ll bring three medication doses with me to the high school each day and complete them in between practices, during film sessions or in offense meetings. All of my players know what’s going on, there’s no secret. One of my keys to success is everyone being on the same page. I’ve got nothing to hide from my players, so I just go about my business teaching offensive schemes or breaking down films while I’m infusing antibiotics. It’s really just another day at the office. During the season, my biggest concern is how to exploit different defenses on a week-to-week basis. I can’t be thinking about what I may or may not look like while I am infusing an IV antibiotic in public.

The world does not stop when I get a PICC line. The antibiotics may eat up some of my time, but life is going to continue with or without me. I would rather be a part of it than sit on the sidelines watching. I have nine days left until I have complete freedom from the line, but until then I think I am still pretty independent.