A couple of thoughts are floating around in my brain today. Just some information that I feel should be here - and if I don't write it, I'm sure I'll forget it.
1. Something that the training staff/doctors don't tell PD patients is that PD has quirks. They usually aren't PD patients themselves and have no actual experience with the process. They don't know what it feels like to have a slow drain, to have to sit up to complete a drain, or to deal with the actual equipment. Something I think is worth mentioning is the situation of using a drain bag.
Some cycler users run the tubing from the catheter straight into a tub or toilet. This is a good option for people who have a convenient layout in their homes. I don't use this method because of the location of the bathroom in relation to the bed. It would be a tripping hazard for my husband. Also, I have cats. And I don't want to tempt them with a tube of bubbling fluid that looks like it would be fun to play with. So I use a drain bag to collect the dialysis fluid.
A drain bag is exactly what it sounds like. A big, square, plastic bag. What happens is that most people who are going to use a drain bag are told to "put it on the floor." Well. Let me tell you what kind of nightmare this can create.
All it takes is one clamp that isn't fully closed and the drain bag will leak all of its contents onto that floor. And if you have carpet in your home, you may be calling a cleaning company or possibly having carpet replaced. Imagine 10 or more liters of fluid just seeping into your floor. It's awful. I've seen posts on various online forums with people asking how to clean up after these accidents. Remember - the fluid you are removing is very much like urine. And that's what would spill out all over the floor. Not pleasant.
I was never advised about this - it's just something I figured out and really think should be shared with anyone who uses a drain bag. Get a plastic bin from the store (Target, WalMart, etc.) and put the drain bag inside the plastic bin. Just make that part of your setup routine. Over the past seven years or so, I have woken up to a plastic bin full of leaked fluid several times. I've forgotten to close a clamp. And I can dump the plastic bin into the tub. And not think about having to clean the carpet. Which would be a horrible mess.
Save yourself the agony of a possible cleaning crisis and use a plastic bin if you use a drain bag.
2. A peculiar side effect of starting on the cycler is PD dreams. Since being on PD, it seems like a few times a month I have quasi-nightmares involving the cycler tubing. I dream that I am at a party and I'm still connected to my machine. Or that I have disconnected from my cycler and can't find a cap to close my catheter.
I think this is normal and natural. We are trained on the specifics of actually doing PD, but not on how to deal with it emotionally. That burden is left to us to figure out. I think PD dreams are part of my mind's way of expressing frustration or fear. When you think about it, it's a little strange being connected to a machine at night. Sometimes I feel like an astronaut, connected to the ship by a tube and I can only go so far because of my lifeline.
Maybe you won't experience the strange PD dreams, but if you do, just know you are not alone.
- Rachael M.
No comments:
Post a Comment