After a few weeks of hemodialysis, a clinic technician suggested PD to me. She said that it was a good choice for people who want to stay independent. When I started to look into it, there wasn't much to look into. I got some basic information, but I wanted to talk to an actual PD patient about the reality of it. However, I didn't know any.
I attended a few training sessions and watched some very cheesy videos. And read some very dry brochures. I understood that PD was potentially a better choice for me, but a lot of questions were swirling around in my head. Now that I have been doing PD for many years, I can answer them for you. In case you also wonder the kind of strange things that I sometimes wondered.
Q: Will people think I am pregnant?
A: Obviously, if you are a man, no. But for women, this is a sensitive issue. Putting fluid into the abdomen sounds like a recipe for image disaster. In my mind, I imagined myself with a big, round, fat belly. I assumed the fluid would collect in a big bump in my gut. I didn't know what it would really look like. As it turns out, the fluid fills the abdominal cavity and only when I had particularly large amounts of fluid dwelling did it visibly register. And even then it was minimal. I didn't even have to buy new clothes. And nobody asked me about it.
Q: Will the fluid make me feel full all the time, causing me to lose my appetite?
A: This is actually a possibility for some people. It depends on how much fluid you carry. For me, when my weight is low, higher amounts of fluid do make me want to eat less. So I keep lower amounts of fluid in my body during the day to avoid losing my appetite. Using the cycler also eliminates the need for me to have a lot of fluid dwelling during the day.
Q: Will my catheter get caught on my clothing or be visible to people?
A: No. Tape it down and pull your underwear up. No problem.
Q: If I use the cycler machine, will I be stuck in bed if there is an emergency?
A: No. There are screw-on caps for your catheter. If you need or want to get out of bed, you can disconnect easily and safely. I sometimes disconnect if I have insomnia and go into the living room to watch tv. Cycler cassettes (the equipment with the tubing connecting you to the machine) have different lengths of tubing. Make sure you ask for one that is long enough for your needs (long enough to allow you to reach the bathroom from your bed - it's nice to have that convenience without disconnecting in case you need to get there quick).
Q: Is it difficult to sleep comfortably with the cycler tubing connected to me during the night?
A: Not for me. It just sort of falls off the side of the bed. You figure it out pretty quick and are able to change sleeping positions as you need to. You can also control the settings on the cycler to quiet the alarms and turn off the lighted display.
Q: When I drain fluid out of my body, will it be bloody or scary looking?
A: Generally, no. Most of the time it will look like urine. A light yellow fluid. Occasionally, when you strain yourself, you might burst a tiny blood vessel. When this happens, a few drops of blood will drain out with the fluid. However, even a few drops of blood can tint the fluid pink or red. It will look like you are losing a lot of blood, but you're not. Bloody drain fluid can be startling, but in most cases it is a very temporary thing. You will be trained on what to do if it continues, but it usually goes away very quickly.
Q: If my manual PD prescription involves four exchanges per day with a full bag of fluid, how can I enjoy myself if I want to go bowling/dancing/out for all-you-can-eat buffet? Won't I be uncomfortable?
A: Your PD prescription is designed to give you the best possible benefits of dialysis. If you follow your prescription regularly, it will support better health. As an independent person, when opportunities for having fun come up, you will want to take advantage of them. What I do when these occasions arise is simply adjust the amount of fluid in my body. If I know I have plans to go out for a big steak dinner or to a party with dancing or for a long day of shopping, I want to be extremely comfortable. For that time, I will fill with a minimal amount of dialysate and enjoy myself. Then get right back on track with my usual prescription amounts. One afternoon or evening with less solution inside the body does not undo all of my efforts to take care of myself.
I'm sure I'll think of more issues that had me perplexed before actually starting PD. I'll post them when I do. And I'll happily answer your questions as well.
- RM
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