Hey, I'm Jason. I'm a chronically-ill-super-freedom-loving-medical-self-journalist.
Chronic disease is not your grandfather’s daily train to the city.
March was not an easy month. April wasn’t so hot either, either – but it’s my birth month so I’m gonna give April a pass here. And the weather’s been pretty much as perfect as it gets, which makes things palatable (except for the wild fires – always the glitch in our rainless climate) . Oh my, now I’ve gone and accidentally gotten off track, literally making a literal reference to my title without even trying. Well …
March and April. Not easy. I counted five major health episodes in those two months alone. I’ll jump forward for just a moment wherein my nephrologist, just after the fourth episode, called me on a Saturday, in my car, to tell me that things would get better, “… just hang in there, Jason, it’s going to pass.” Hmmm. It’s my understanding that when your doctor is on the phone to reassure you – things might be going the wrong direction. Alas, doctors are often correct; I have been feeling quite well. In May. So far.
Okay, let’s get started. Major health episode number one was simply high Potassium. I say “simply” because I sometimes amuse myself with statements like, “it’s only Potassium,” or “at least I only have kidney disease.” Ultimately, it’s not a joke. Potassium (“K” from here out. Look it up.) is in fact a major health episode. High K will kill you. Instantly. Mine was high. Like Scooby and Shaggy high. 7.1 at its peak. Your K runs around 3-4 on a Richter-scale type of measure.
If inspired, I could tell you how the two ER visits went down, but that is, without a doubt, fodder for another post. Let’s skip to the solution for my high K – Miralax and a new dialysis regimen. That’s right, regularity. On another blog, I commented of the need for dialysis patients to be regular in their, uh, bathroom visits. This activity, you see, removes K from the body. Back up that system, buddy, and you’re raising your K. The body is an amazing place, is it not?
With my regular-ness taken care of, my care team moved on to examining the way in which I dialyze. By which I mean how my dialysis machine is programmed.
I suppose this might be a good place for you non-dialysis-needing readers to get a quick run-down on some dialysis terms and concepts. A dwell is the amount of time dialysate sits in the peritoneum. An exchange is the act of removing dialysate that is unclean with new, clean dialysate. I wish it were all more complicated than that, but it’s not – leaving me with very little editorial access to sarcastic jabs about the “complicated” system of peritoneal dialysis. Thus, we move on.
My team, mostly lead by one fucking incredible nurse named Joe (yes, he’s male, not an androgynous female nurse who uses Joe to avoid being sexually identified by her name, you chauvinist pig), added more dwell time to my program. Instead of dialyzing seven hours each night, I now dialyze eight. There are now more, shorter dwells which remove more, smaller molecules. And, yes, K is a smaller molecule.
It worked! The first lab result after all the changes was 3.8, a spectacular number for a dialysis patient. Isn’t that great? No. It wasn’t.
You see, as you would have a heart attack if your K reached 7.1 and I would not (I’m accustomed to high K – as are most dialysis patients), 3.8K is a bit like dropping me off a cliff. Ouch.
I arrive at the Original Farmers Market at Third and Fairfax (plug!) with my family for dinner the first night after all the improvements looking like death on a stick. My K is so low comparatively speaking that my body is shutting down – I don’t know what the opposite of a heart attack is, but that’s what I had. I was gray and sallow and droopy. Not my usually handsome self, I suppose.
The answer? A concerned family running around the market grabbing food and shoving it in front of me. By the end of a beef satay or two, a coffee (you won’t find me without one, in general), and a few other dishes of food, I was back on track.
Ooh, I just used “track” as a turn of phrase, cementing my “derailment” headline. Nailed it!
Stay tuned for another medical mishap, coming to your screen soon.
Appreciate you sharing, great article post.Thanks Again. Great.
Hi Jason, this is the first post I’ve read from your blog and absolutely love your writing style! As a current wife of a former PD patient, I can only say how much I hated having to put up with that machine all night, much less how much my husband hated it. I hope May continues to be a better month for you!
Wait.. not first post.. but whatever!!
Well done, Jason! Enjoyable reading AND it was informative! Good points about Potassium both low and high. The two chemicals we dialysis patients have to monitor closely are: Phosphorus and Potassium. Both are a constant struggle. Keep up the good work.
Hello Jason!! I agree with Kidneywife…I love your writing style,,the whit, humor, sarcasm….(well, minus a few “f-bombs”…but no judging here. : ) I am so glad I found your blog and I intend to mark it under my faves. I followed a linkfrom Davita discussion forum that lead me to you. The timing is couldn’t be better. I spend my weekend enjoying yummy Kayexalate to lower my potassium. This is 10 different kinds of fun, let me tell you. This is not my first rodeo with high potassium. I have had several instances where my potassium was 6-6.2. I think one time it reached 7, and that landed me a trip to the ER. I don’t take it lightly at all, and I have made earnest attempts at trying to control this through my diet. I believe one of the culprits could be Losartan. I’ve done research and have learned that it can contribute to a high potassium level. My doctor recently replaced it with Norvask. Also, something I realized that may also be a factor is chronic constipation. I do take OTC (Ducosate Sodium) every night, and when necessary, I take Miralax, but perhaps I should be taking that more frequently. Hopefully with the change in BP med, and if I increase my Miralax, I might be able to tackle this pesky problem. Now….if I can just get me *%#)@ Phosphorus down!!! : )