Here's a completely unrelated picture so the others won't show up on the blog right away:
That's our oldest cat, John. We call him Boo! He likes to lay on my desk while I work on my laptop, even if he's upside down.
The good thing about today is that it's site change day. The bad thing about today is that it's site change day.
I am taking a medication called Remodulin through a subcutaneous (under the skin) pump. It dilates the arteries and vessels in my lungs to help me breathe better. It also makes my skin a lovely shade of sunburned red.
Remodulin works amazingly well for me. I definitely would not be able to do all the physical things I do now were I not on it. The thing about Remodulin, though, is that it is terrible every time you have to change your subq site. Since Remodulin is a dilator, it dilates all the arteries and vessels underneath the subq site as well, and it's near unbearably painful for the first week a new site is in. When I was being taught how to use the Remodulin and supplies, the nurses called it "Hell Week." Friends, they weren't lying.
So I say that it's a bad day because I have to change a site--this week will be hard for me. Lately I've been putting my sites in my upper thighs and I'm at least able to stay at work and not take a day off. I only have 8 out of 9 sick days left to last me until the beginning of June and those I have are precious to me.
It's also a good day because today I get to shower without putting on a flimsy plastic cover over my site. It is definitely one of the best 20 minutes of my month, that shower.
So typically my sites last about a month on my leg. Sometimes I can push them a bit longer, or sometimes they come out unexpectedly. This time, I pushed it a little longer than I should have - my site got infected.
It's hard to tell from the picture but it's definitely swollen, warm to the touch, and tender.
When I took the actual site out it started weeping. Fun! (Barf)
Here it is after I cleaned it up a little bit. Not so gross, huh?
That shower, man. It's funny because I still stand in the way I normally do to try and keep the water off my leg/site - until I remembered I didn't have to!
Okay so here's what I need for a new site:
Alcohol wipes, skin prep (it makes the skin tacky so the site itself will stick), two Cleo catheters because inevitably one doesn't work or I have to redo the site because it doesn't connect well, a new line, a syringe, a primapore bandage to keep the site clean after I change everything and my actual pump.
The Cleos have a catheter inside that sticks into my skin with a needle. It pops down when I punch it into my skin.
After I pop the catheter in I hook up the new line and I'm ready to go. The pain doesn't usually start until the next day (if I'm able to choose when I take out my site I do it in the evening so I can sleep so I don't have to deal with the pain right away).
It's always a guessing game as to where the next site should go. There are knots under my skin where the previous sites were placed. It's a delicate balancing act between a "good site area" and "that's going to be way more painful than it should be for various reasons."
Here's to staying alive and breathing the best I can. And the hope that eventually I can maybe move away from Remodulin to something else that works just as well.
-Nicole
No comments:
Post a Comment