Fighting Fluid Retention on Peritoneal Dialysis Vol 3: The New Daily Grind
Hello There! Welcome back to the Summer 2023, where I struggled through another change in my Peritoneal Dialysis Prescription change. I shifted from my classic 2 Big Baxter Yellows and half a purple day fill to what feels like a whopping 1 Big Green, 1 Big Yellow, a mini yellow and more than half of a purple day fill. It may not seem like a massive change but wow.... my body felt the change!
I explore all the benefits of this change in my previous post and benefitted from the gratitude glow, you can check that out here:
This post could be a downer, you are forewarned...
The Bad
Longer Set Up and Clean Up
This was an unexpected killer for me, I had gotten so used to my three bag and 1 drain bag set up, the additional big bag and Y connector for the additional drain bag, felt like a MASSIVE addition to my set up.
It honestly sounds so petty but it was the added effort of having to open a 2 big bag boxes every other night (1x green box and 1x yellow box) rather than just getting through big yellow box a night. Furthermore I had to now pick from both 5 pack small bag boxes for Pink and Yellow and making sure when I am doing my connections I am connecting all the tubes to the right colour bags.
For me that is: Red heater to Big Green, Second to Big Yellow, Third to Mini Yellow, Fourth Blue to Mini Purple. And still not forget to connect the patient extender to the patient line!
It's just mental fatigue and the process that used to be so automated and second nature, for the first few weeks even month you are constantly second guessing and double checking and having to be mentally in the room whilst setting up because 'cheese and crackers' do you NOT WANT to make a mistake and REDO THE ENTIRE HAND WASHING and Box opening again. flashback nightmares of 10pm restarts.
Further to the additional bags attached to my machine, was the additional fluid I was draining! This meant 1x drain bag a night was no longer cutting it.
Enter stage: the Y - CONNECTOR !
Previously, I got away with just the one drain bag a night, but now I use 2x drain bags a night connected together by the new piece in rotation the Y-CONNECTOR. This was a bit of an effort too! Initially, I had to dig out my initial box which was buried away and was just in date, if not a bit yellow. Nevertheless, they did the trick of connecting the now double drain bags to the cassette, but ugh its just an extra 3 steps to what is already a cumbersome process.
Friendly reminder! If you have a new regime it is well worth chatting on the phone with Baxter Supply team for you next delivery. Yes, you can still add your stock lists online but there is definite benefit of double checking with Baxter that they have the (1) new regime prescription, (2) understand you now need double the number of drain bags, (3) understand you now need to have Y-connectors on the monthly! They missed out on the Y-connectors for me, so glad I mentioned it!
As you can see the seemingly easy change in prescription, oh an extra bag or 2, can become a MASSIVE DISRUPTION in your daily routine. The speed of setting up has improved and the grind of mentally setting up is slowly fading but it definitely an uphill climb again and it is just generally longer! It has added at least an extra 5-10 mins to my set up which does not make a happy Lai.
Also... it's two drain bags to drain. 😒
It's two extra bags on top to clean away and drain, especially as I do not always get through all the top table fluid. 😢
It's for the greater good of my body, but the daily grind is arduous at the start. 😑
Boxes, Boxes, Boxes
More supplies. More Fluid. More Boxes.
The Monthly delivery takes up twice as much room as it once did but I am also going through it just as fast which means my tower of empty Baxter boxes each week climb up to my ceiling! It is probably the more fun aspects of the week stacking them super high but it is super annoying to break them all down at the end of the week!
If we could sell cardboard in this country, I'm sure I'd have a cardboard empire. I certainly can build a cardboard castle with all the boxes I have!
I have so much gratitude for the house I live in as we have spare room to shove my monthly supply. I keep about a week's worth in my room with my ancillary stock. Thankfully, all the empty carcasses of Baxter bags still fit into one yellow bag!
Conclusion
In this post, I really explored the practical realities of having a new prescription for peritoneal dialysis. When I was told during the appointment with the nephrologist, I never really thought about the practical realities of the extra two bags of fluid but it has really made a big impact on the daily grind of setting up the machine etc.
Luckily, I think all the above are easy enough to adjust to. Once you have gotten over the mental fatigue of all the changes, it does EVENTUALLY... become second nature again to set up and break down the machine. It just takes time, and literally MORE TIME. But it's okay, once it became second nature again, I was on much better terms with the whole ordeal.
Next time, I'll discuss the absolute Ugliest impacts of this regime change and spoiler a lot of it is the psychological impact of it all with a sprinkle of dehydration in there too. 😉
Wishing you well on your journey.
Lai
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IG: My_Kidney_and_Lai
