It’s not a bad thing to live your life by a clock. I think I’m just angry that I had to decide to not try to see fireworks this year. You see, my Baxter delivery day was this morning between 7:45 and 10am. and my very cute delivery guy seems to like to arrive right at the beginning of that window. That meant since I spend 9 hours on the machine, I had to start prepping at 10pm just in case any alarms go off. Which of course they did. I managed an awkwardly fitful night’s sleep because of the alarms and somehow still got off the machine with 10 minutes to spare before he arrived.
There’s also the noise to contend with. That puppy is mad loud! You can’t be a light sleeper and go on the CCPD machine. I miss the quiet.
I miss sleeping with abandon at night, too. I know that sounds odd, but I do. If I sleep on my stomach, I might set off the alarm. If I catch the tubing under me or wrap myself around it, I might set off the alarm. I do move a lot when I sleep, or at least used to.
I had a dream the other night that aliens or mad scientists had come to harvest the creepy-crawlies they’ve implanted in my abdomen through the PD tube and machine. I woke up laughing at myself for that one.
And yet its hard not to think of yourself as a science experiment when you try to make sure no one can see the PD catheter through your jeans – because you can feel it through them.
Every day I’m at least a little scared that I won’t wash my hands long enough or forget to close the vent, turn off the fan, close the door all the way, forget my mask at a crucial time and some crazy microscopic bacteria is going to find its way into my PD tube. I’ll get deathly ill and wind up back on hemodialysis.
I know that’s excessive, but “be super careful” is the advice the one person who was on PD that I could talk to. Almost no one on hemo had any real answers when I asked questions. You’d think it was some secretive cult or something. I needed desperately for someone to tell me how it felt, how soon the exhaustion would stop. nobody actually ON hemo would or could give me any answers.
It doesn’t hurt any more than having blood drawn – minus the needle prick. It feels weird, emotionally, to watch your blood drain slowly out of your body and pump back in.
I couldn’t stop touching the tubing under my skin. It feels hard and foreign. I often wondered how my skin didn’t break down over that spot. Actually, the only time my skin did break down was from the adhesive on the myriad types of tape they used to secure the bandage. (Okay it was only 4 or 5, but how often do you get to use the word Heather Chandler got wrong on her vocab test?)
The actual exit site of the hemo catheter can be sore for…ever. I only did hemo for about 10 weeks. The whole time when they did a bandage change, the exit site would sting.
I got told it was normal.
None of this feels normal.