Hey, I'm Jason. I'm a chronically-ill-super-freedom-loving-medical-self-journalist.
Pummelry is not a word. Here’s a post-script to what you’re about to read. Yes, that’d be correct, a pre-post-script. The hell you’re going to read about is worth the hassle when compared to hemodialysis, in my opinion. And it’s purely by chance I suffered these fates – not all patients will have these anomalies to their anatomies. Stage IV renal disease brings with it many issues, but another day with my family, well … what’s that worth?
Chew on this: even as I’m about to count my admittedly numerous procedures, there is a dialysis patient out there who has been through more. Dialysis patients spend months of their lives in hospitals and clinics. Having said this, I earned a few stripes of my own this month. How many, you ask? Oh fearless reader, how I love you so. Let’s count!
First things first, I have one catheter for dialysis, it’s in my belly. My nephrologist says, “it looks infected, let’s replace it.” So nine weeks ago, I have my first surgery. Turns out there are two catheters, one above skin, one below. Surgery one: surgeon replaces catheter above skin, leaves catheter under skin. This, though it sounds rough, is a plus (because I get to stay on PD). Over the next two days, though, my belly leaks two kilos of dialysis fluid (for those of you stuck in imperial numbering systems, two kilos equals four-and-a-half pounds, or two bottles of 7-Up or even Coke Zero). I leak all over about 70% of our home and 100% percent of my clothing.
Pause. Now, I don’t know if you’ve leaked fluid all over yourself and your property, from your belly, for two days. If you have, you may skip this block quote and move along. For the rest, I’ll express what this is like. In words. Okay. Here I go. Wait for it.
You know … I’m don’t think I can express an emotion for body leakage. There’s a I might by dying element. Kid stuff, you know? The worst part about leaking is that a serious amount of paranoia sets in. Your belly is just not supposed to leak, okay? Even I was freaked out—and I do not freak out easily. Don’t leak. That’s all I’ve got for you. Don’t. Leak.
The leak causes countless doctors to go into ASAP mode. I’m rushed to the hospital in 15 minutes for surgery two. Entire belly catheter is to be removed – at once. A chest catheter (HDCVC, we’ll call it now) is to be placed. So they inflate my stomach (oh, yes they did – I was anesthetized) and remove my belly piece. The first HDCVC is placed on the right side of my chest.
The searing pain I awake to indicates something is wrong. I complain, get two Percocet every fours. Pain is a 8-9/10 on the happy face pain chart. Even so, a jackass doctor comes by and tells me, “Yeah, well, it’s supposed to hurt, man.” I know this jackass from two previous encounters—I write him off, man. What a jackass.
Counting onward. First overnight. Searing pain multiplies, switch to drug number two: morphine! Dialysis is set up for 8:00 am. I eat half of my first meal in two days. Other half is wasted while I lay 100% flat to facilitate at least some amount of hemodialysis. The new HDCVC is what we call “positional.” Positional means, “it doesn’t work.” I return to my human-parking-bay, no. 9. Rebecca, my hot, tattooed wife, and I wait nearly six hours before she’s had enough and calls the surgeon’s personal phone number to get some answers. HDCVC no. 1 is to be removed (it landed on a major nerve in my shoulder, causing the pain, man). HDCVC no. 2 is to be placed.
Stop. I promised I’d write short posts this week and we are off in the weeds on the counting. So, if you, my fearless reader, are up for it, I propose a flurry of a finish here.
I have surgery 3, remove HDCVC no. 1 and replace with HDCVC no. 2. One more day in the hospital. I do 4-5 treatments of clinic-based dialysis, three times a week, four hours each time. By treatment number six, it’s official: HDCVC no. 2 is positional, too. Surgery 4 removes HDCVC no. 2 and replaces it with HDCVC no. 3 (now on the left side of my chest—the right side has been cut one too many times). No. 3 works … 90% of the time. We’ll take it.
Back for surgery 5 for my new peritoneal catheter! Now 3 more weeks of hemo while I heal. I end up doing nearly 7 weeks of hemo, that’s 84 hours of dialysis, not counting the I feel like I’m going to die time in between treatments. We finally get the new PD catheter in working order. Two weeks later, I go to surgery 6 (this one’s a “procedure,” they say as they roll me into an operating room). No. 6 removes the catheter from my chest. The amount of relief from not having tape and tubes stuck to and into one’s chest is infinite.
In summary: 7 weeks, 3 HDCVCs, 2.5 peritoneal catheters, 6 surgeries, 84+ hours of hemodialysis, dozens of clinic visits, two children on summer break, $$$ on babysitters and one frustrated and justifiably tired wife. I’ve left out five pages of in-between stories. To sum things up: one rough summer.
For next time: Lisa Ling and I share a frustration and a guy from prison reminds me of something.