As I lie awake at night listening to the machine and avoiding the brightness from the screen, I am still in awe that this is my life. For the last five months, I have been on the cycler - a dialysis machine that operates as I sleep. The cycler was mentioned in a previous post.
This is my new normal, and oh, how I wish it wasn’t. I feel that no one really understands how this invades my life and daily routines. That said, I am very grateful for this invention that helps me live.
Sleep comes less easily. Most nights, I wake up to a tingle of pain in my bladder. It is called drain pain. The best way to describe it is that it’s like period cramps but deeper down.
Each night, I set aside some time to set up my machine, a couple of hours before I go to bed. Preparing early allows me to pay full attention to cleanliness and sterilization.
Here are the steps I take to set up my machine.
- Gather supplies (dialysis fluid, drain bags, and cassette) and wipe equipment down with bleach wipes.
- Wear mask and wash hands for one minute.
- Re-enter bedroom with vents covered and animals out.
- Follow directions to set up machine.
a. DO NOT TOUCH CONNECTING PIECES.
I cannot emphasize how important it is to be clean. Risks of contamination can lead to peritonitis and other infections.
Once my machine is set up I go about my usual night-time routine. When it is time to connect to my machine before bed, repeat steps 2 and 3, plus one more- sterilizing my catheter connector for two minutes with a bleach solution; then FINALLY I connect.
At night when I am connected to my machine, I have limited mobility around the house. The tube that connects me to the machine is 20 feet long, so I can’t go too far…
Exhaustion usually puts me to sleep.
In the morning, I wake up, disconnect (sterilize, get a new cap) and repeat.