Let's Talk Peritoneal Dialysis!
Hey, I'm Jason. I'm a chronically-ill-super-freedom-loving-medical-self-journalist.
Installment Two: Five Medical Derailments
By now certainly you’ve read my first installment in which our hero screws up his “K.” And in which our hero has the program on his dialysis machine retooled in such a way that smaller molecules are removed faster.
Many small molecules are removed by peritoneal dialysis. Potassium is one, which is good. Fluid is another. In a normal world, removing fluid is great. (Find me a normal world and we should talk – I got some guys with a U-Haul ready to pack it up and go.) The body removes excess fluid every time you pee. Not only does it get removed through pee, the amount of fluid removed is regulated by your body. In this way, your body retains its stasis. Anyone would understand the lack of stasis when, after lovely dinner down at Chez Saline – where they serve mainly pickles, bouillon and, coincidentally, the saltiest food in America: P.F. Chang’s Wok Charred Beef (10,045 milligrams sodium) – those digits on the ends of your arms swell up like little sausages. That’s the body’s way of telling you to lay off the salt for a while; it would like to return to a state of, well, stasis.
Dialysis patients, in my estimation, spend bunches of time worrying about fluid, stasis and sodium. Without kidneys, the body has no way to either regulate nor remove fluid. I go into fairly deep detail about all of this in my post here; try to keep up. Like other dialysis patients, I get into a bit of a routine with my fluid intake. I know how much I can drink on any given day without making sausages. If I drink too little, my machine takes off fluid anyway – and then my blood pressure drops. Please, could we just get to the derailment? I thought that’s why we were reading this.
So when my dialysis regimen is changed in order to remove more K, suddenly, I’m removing more fluid. Lots more. I was warned by my nurse, but what the level of “more fluid” meant, I clearly took a tad too lightly. I also take relatively strong blood pressure medications, daily. Here it comes. The first weekend of my new treatment, my stasis fell into a chasm. My machine continued to take lots of fluid, I continued to take my BP meds, and my blood pressure dropped. I went from my normal highs of 150/95 to low for anybody 90/60. At one point, my pressure was so low, I was seeing spots. Those are the spots you see just before you pass out. Great.
It’s not easy climbing out of such a chasm. Not easy at all. Every time I stood up, I got a head rush that even junkies would struggle out of. By direction of my doc, I stopped taking my BP meds, but even those remained in my system for days. I added a liter of water next to my bed so I could keep up even at night, when my dialysis is at its fiercest. Nevertheless, I was grabbing any available stable item most of the weekend just to keep myself from hitting the floor. This shit is serious. I can make light of all of it in hindsight, though I won’t soon forget another time when my BP was so über-low I got a ride in an ambulance to my local ER. A weekend wondering if my pressure will drop that low is a weekend to be avoided.
And now, as I re-read this post, I am reminded (and baffled) that my private insurance company is constantly quizzing me to make sure I’m “disabled.” They’d like to know why I can’t work. Folks, at just two derailments, I’m emotionally struck at how constant the battle is for dialysis patients. It never stops. Not even for a goddamn coffee break.
Installment three comes next (I suppose you’re able to count on your own), in which our hero descends further into a month of pain.
Let's Talk Peritoneal Dialysis! 
I’ve been hoping you’d post again. I’m just starting on PD and I’ve heard so many horror stories that even though I have my catheter in place, I’m putting it off. Could you talk on the subject of whether or not you’ve had pain with your exchanges, if you do manual vs. machine, etc.. I’d like another perspective. Thanks so much, your blog is important. Jen
Jen, I hope by the time you’re reading this that you have found my response on the blog. Thanks for your notes.