Let's Talk Peritoneal Dialysis!
Hey, I'm Jason. I'm a chronically-ill-super-freedom-loving-medical-self-journalist.
Weights & Measures
Today I’m including a simple chart I’ve been working on. I suppose that other dialysis patients could use this chart, but I think it’s probably more significant that non-dialysis patients get the idea.
When kidneys fail, more often than not, the production of urine stops completely. My failing kidneys were producing plenty of urine as of a couple of weeks ago, but the introduction of dialysis treatments finally shut that down (the irony of dialysis taking away the last of my kidney function is often noted). Making urine is kind of a giggle moment if you just bring it up casually, but for every dialysis patient who doesn’t make urine you’ll find a patient who cannot drink fluids. For every person who cannot drink fluids, you’ll find a daily struggle against a very natural urge: drink when thirsty.
A dialysis patient who takes on too much fluid between treatments suffers for it. Removing a great amount of fluid from the blood stream over the very short course of dialysis is tough. As the body adjusts to the quick change in pressure and contents, the patient experiences rapid drops in blood pressure, headaches, leg cramping and certainly general mailaise. The end of treatment offers no solice – from my experience the only reasonable thing to do after a tough treatment of fluid removal is to go home and sleep off the pain.
I consider a reasonable fluid gain between treatments to be between 2.0 and 3.0 liters. Fluid gains above 3.0 liters starts to introduce the suffering. Okay, so you’re thinking 2 liters in 48 hours ain’t so bad. It’s tough. On the one hand, it’s a lot less fluid than you think. You can try it at home: buy two 1-liter bottles of water and drink nothing but those two bottles over a 48-hour period. No cheating (and good luck).
The other problem with fluid gain is tracking how much fluid is being consumed. An example of the challenge with this is at a restaurant. The waitress comes by and politely fills your iced-tea when you’re not looking. Where was the fluid before she re-filled? How big is this restaurant glass? Now that it’s at the table, how do you resist drinking it – especially since, well … you’re thirsty.
This chart is my attempt to address my fluid gains. If I don’t know how much fluid is in each container I regularly use, I can’t track my gains. For now, I’ve purchased three Nalgene canteens – two 1-liter bottles and one half-liter bottle. I’m filling each one with a favorite drink [for now: water (1 liter), limeade (1 liter), and coffee (half liter)]. And that’s what I can drink between treatments. Nothing else. Today, treatment is still 6 hours away and I’m down to my last .25 liter (less than one soda can’s worth) for the rest of the day. I guess I have to pace myself better.
Click here to download the PDF: Fluid Intake
A cheat sheet I'm using to measure fluid.
Let's Talk Peritoneal Dialysis! 
Thanks so much for the info. I love your blog, I found it yesterday 🙂 I am switching (hopefully) to PD from HD in -center. I hate that so much, PD has to be better. Already trouble with my fistula and I want to feel more in control. I know your blog is going to help me through some rough patches.
Update:
It works. So far, I’ve gained less that two kilos between each treatment – even on the weekends (when the fluid restriction is tighter because of the extra day). I’m amazed at how quickly I can go through 2 liters of fluid. It now does not surprise me at all that I was constantly over-fluid in my 20s. Without a measuring system, it is impossible to tell how much fluid I take in.
Jason,
Our thoughts and prayers are with you.