Go ask Alice

My husband, Patrick, and I have been married for almost eleven years now. He has what is classified as a terminal illness: he is in renal failure, which requires him to be on dialysis. Dialysis is life support. It’s so common, many people but don’t think of it that way. But most people also don’t think of a 30-year-old man needing dialysis either. Yet if he were to go off his treatments, in 8-12 days, he would be dead.

In October 2008, Patrick was diagnosed with IgA nephropathy, or Berger’s disease, an autoimmune disorder. Currently, we do peritoneal dialysis (PD) at home. We’ve been doing it for two years now. We call his machine Alice the Dialysis Machine. Say hi to Alice:

It's often easy to hate Alice. Most men dream of threesomes, but I’m pretty sure this doesn’t fit the fantasy. A friend of ours suggested we decorate her with bumper stickers that say BITCH and spray-paint her with skulls and crossbones. That’s a fun idea, but then I remind myself that she’s the thing keeping him alive, and when she beeps in the night, waking us both up multiple times, and when the drain pains are agonizing, I have to remind myself to hate her less.

What are drain pains? Oh, well, let me explain some more about how dialysis works.

Peritoneal dialysis is less common in the US. When most people think of dialysis, they think of hemo dialysis, where patients have to go into a clinic a few times a week and basically get their blood sucked out, cleaned, and put back in—a painful and exhausting process, I’m afraid. (Patrick had to go through it before his PD catheter was ready for use.) Hemo is done through a fistula, usually in the arm, but it can also go in the neck or the leg. Patrick had a temporary line put in his neck and it was not pretty.

PD is a method done, as the name implies, through the peritoneal cavity, or the abdomen. A catheter is inserted into the abdomen:

Cathy the Catheter

As you can see, the catheter means that Patrick has a perpetual open wound in his stomach, which means we always have to be on the look-out for infection or other complications.

Through Cathy, dialysate fluid (sugar water) is pumped into the abdominal cavity where it is allowed to set for a period of time. As it sets, it soaks up toxins that would ordinarily be filtered by the kidneys. Then it gets pumped back out. The waste material that gets pumped out goes through a tube, down the hall to the bathroom and into the toilet.

This is done multiple times over the course of the treatment. Treatments are done nightly. A full treatment takes about eight hours, not including prep-time, during which 6.5 liters of dialysate get pumped through his abdomen, with some left in at the end so his stomach is not left dry. Getting left dry is horribly painful. The amount of dialysate a person uses varies; Patrick actually uses a very small amount of dialysate compared to most adults.

We discovered that the PD catheter come in only two sizes—adult and child. So a catheter that would fit, say, a 300-pound man is the same catheter they use on 135-pound Patrick. The catheter pokes. And when the treatments are going on, sometimes the catheter shifts against his insides. Imagine a straw getting stuck against the side of a Capri Sun bag and you have an idea of what’s going on. Patrick does his dialysis treatments overnight, so we have to be very careful about how he sleeps—don’t want to roll over on his tubing, or accidentally tug anything out. Thankfully, that’s never happened, but you never stop being paranoid about it. Also, when he hooks up to the machine at night, the environment has to be as sterile as possible, so he basically has to scrub in for it. Before scrubbing in, his dialysate bags have to be sufficiently warmed up, which takes 3-4 hours. You do not want cold dialysate fluid going into your belly.

Dialysis takes a lot of supplies. We place an order monthly through a company called Fresnius who delivers them to our house. This photo shows our storage room in the basement, fully stocked. Supplies cost around $12,000. Insurance, Medicare and the American Kidney Foundation cover the bulk of our medical expenses. The supplies consist of bags of dialysate, tubing sets with clamps, safety caps with iodine, hand sanitizer, medical-grade hand soap, alcohol wipes, bleach wipes, belts to hold his catheter in place, heating pads, collection bags, and IV antibiotics. We have to have special medical tags for trash collection because, obviously, all of this accumulates a lot of waste. None of the supplies are reusable. Of course, we have permanent equipment like Alice herself, and an IV pole to hang the bags of dialysate fluids in case of a power outage, or if we ever decided to travel. And finally, there’s medications. At one point, Patrick was up to nineteen separate medications. Now he’s down to thirteen.

One pill makes you larger, and one pill makes you small . . . 

We have been on the transplant list for eighteen months. The wait time varies from state to state. In Missouri, the average wait is 18 months to three years. We will be at the long end of the spectrum because Patrick’s blood type is O-positive, which means he can only receive from other O-positives.

You may be wondering why we opted for PD. Well, consider that your kidneys operate 24/7. The more dialysis you can do, the closer you get to normal kidney function. It also gives us a more direct role in Patrick’s health, rather than having to rely on going to the clinic three times a week and letting someone else hook him up to a machine. Finally, it’s nice to be able to do this at home, in our own bed, even if it means strange bedfellows.

Called Alice.