I’ve been busy
It’s been awhile, I know. A lot’s been going on though, ya know.
I got my catheter “installed.” Not sure how else to put it. The surgery was uneventful. Well, as far as I know, but then again I was in what they called a “twilight sedation” so I have no clue what happened during that hour, or for a couple hours after apparently. Mr. W said I was pretty out of it and has reminded me of a couple conversations I had after I thought I was aware, but apparently not so much. It’s no big thing really. And literally. Basically, there is a normal sized IV tube entering my skin about 4 inches below my collarbone. There is a winged plastic tab at the insertion site which is stitched to my skin there, but my nurse explained yesterday that this really isn’t necessary, and actually more of a nuisance for cleaning. She suggested I have my doctor remove it in a couple weeks. There is a cuff of sorts at the site, on the inside, which is designed so that my skin actually grows into it, providing a barrier to the outside world. Pretty cool stuff. The IV tube is tunneled under my skin and up about 3 inches, where there is another incision site. This is where the tube actually goes into a vein, and continues down towards my heart. All in all, it’s not so pretty, but really not that bad. Of course, there is about 6 inches of tubing coming out of my chest, the end of which has a fairly large nozzle-y thing which is what I connect to my meds during my infusions.
The infusions are simple. I push 10 ccs of saline from a pre-loaded, needle-less syringe. Then the antibiotics. The image of IV antibiotics is a pole with a bag that works on gravity, forcing you to be stationary for as long as it takes for the bag to empty. But oh the amazingness that is modern medicine! I have these “accu-flo” antibiotic balls that are just fabulous. Well, as fabulous as being on IV meds can be. I hook it up to my little nozzle thingy, flip the clamp, and the pressurized ball pumps in the antibiotics at whatever pre-set rate. (In my case, 100mL over 30 mins) Once connected, I can get up, move around, do whatever instead of being tied to an IV pole. After the antibiotics, another 10 ccs of saline, followed by 5 ccs of heparin, which apparently stays in the tube to ward off any blood-clots or blockages, but which also apparently I don’t need to use since I have a Groshong catheter which is specifically designed to not have clots or blockages, thus avoiding the need for heparin flushes. Hmmm…doing it anyway…at least for now. Of course there is lots of hand-washing and hand sanitizing and alcohol wiping going on all along the way. But all in all, no biggie.
The hardest thing about all of this is logistics. The whole process takes about 45 minutes, give or take an extra hand-washing. Plus, the antibiotics are stored in the fridge, so have to be removed and warmed to room temperature naturally, 4 -6 hours prior to use. Also, I do two a day, 12 hours apart. I’ve been doing 9am/9pm, which means I take one dose out of the fridge at 5am when I first get up for the day, but then have to do that dose at work. Also, on the weekends when I’d like to sleep a little later, I still have to set my alarm for 5am just to take it out of the fridge. The nurse said I could take it out the night before, stretch the extra 2 hours for 8 hours of sleep (uh-huh, sure I get 8 hours) and do it in the morning. But that means I have to add 45 minutes to my getting ready for work, so I have to get up at 4ish instead of 5ish. YUCK! Also, that means I actually have to be awake at the crack-of-freaking-dawn on the weekends as well in order to maintain that every-12-hours-constant-levels-of-antibiotics-in-your-system thing. Yeah, still working on that one.
Also, I CAN’T SHOWER! Don’t worry, I’m bathing. In a bathtub. Which I hate. Nothing like sitting in your own filth! Plus the bottom of you is wet and warm, but the top of you is dry and cold, and the water doesn’t stay hot…or clean…yeah, not a fan of baths. They do make waterproof sleeves for PICC lines, but those are for arms and legs. You can’t put a sleeve over your boob and expect it to keep water out. I’ve tried the plastic wrap and tape combo, but the pesky area between side-boob and armpit just doesn’t cooperate. It’s kind of foldy and stretchy, so tape doesn’t want to stay put with movement and water in the mix, and one handed hair washing just doesn’t work. *hrumph* To remedy the hair washing thing, I chopped it all off. So much for growing it out for the wedding! This way I don’t have to wash it every day. When I do wash, or should I say Mr. W washes my hair (and I call him Mr. Wonderful!), the short hair makes it significantly easier. He is very good at it and I’m loving every second of the pampering at his hand, but he’s bald and has been for years, so has very little familiarity on what it takes to get long hair actually clean and conditioned. Ah, well. They do make very convincing hairpieces nowadays…
Beyond all this, I “shouldn’t” pick up my kids (uh, yeah right) or exerting myself with lifting or stretching or anything like that. And there is the wardrobe thing.
I gave up on hiding it immediately after the thought crossed my mind. What the hell for? I’m not ashamed. Yeah, I have an illness. So what? It’s not like I can help it or I did something bad. So what if people look and wonder. Ask away and I’ll be happy to share! I do keep the actual insertion site covered, mostly, just because it seems to gross people out a little. But my happy bandage is out there for all to see! But then there is the matter of the tube. I don’t really care about it’s visibility, but the comfort level is different. See the head of the tube, the part where I hook up my meds, it’s rather bulky. I imagined just tucking it all into my bra, but, no. That’s just not comfortable at all. Hanging isn’t an option really. It’s 6 inches of tubing with a 2 inch nozzle on the end. Not practical. I have figured that tops with a built-in shelf bra seem to work out. I’ve got two tank tops like that, which I’ve been wearing under everything. But, alas, it is winter, and the tanks have gone off the shelves at the store in favor of warmer clothes. Dammit! But then there is Victoria’s Secret! Ah, Vicky! Making my life a little better, one under garment at a time! 
Victoria’s Secret has these “bra-tops” which I normally hate because the “bra” part is nothing near as fabulous as their normal bras and I just have to wear a normal bra with it anyway, so why bother? But, they do all have that handy shelf part that perfectly holds my nozzle-y thing in a semi-secure area, without digging or pinching or anything! And wa-la…another reason to shop! 
So there is some silver lining, I’ll admit it. Oh, yeah, and eventually (I’m going to have this for at least the next 4 months) I will get better. But until then, I’m sure there will be more bitching about it.
I apologize in advance.
At least I talked about boobs and under-garments too.
Your welcome!
Tags: Lyme disease