Another day at the blood laundromat

 

     Sunday I posted "Living Legacy," my cover story in Rotary magazine about encouraging people in India — and everybody else — to donate a kidney. This is the sidebar to the story, about my cousin Harry, whose situation further sensitized me to the challenges of kidney disease. You can see the version that ran in the magazine here.

     Dawn along a charmless stretch of Mystic Avenue in Medford, a suburb of Boston. Past a used car lot, a nail salon, a laundromat, a Jiffy Lube, and warehouses stocking electrical, roofing and plumbing supplies. 

     Finally, a low, freestanding building, Fresenius Medical Care's Medford Dialysis Center. We arrive just before 7 a.m. after an hour's drive from Boxborough in the predawn darkness.

     "There are closer medical clinics, but they're worse," my cousin Harry Roberts explains as we pull into the parking lot. "They're a cross between a medical clinic and a bus station."

     Harry is here for dialysis, the three-hours-a-day, five-times a week blood filtration and cleansing that keeps him alive by doing the job of his faltering kidneys. And I'm here because ... well, it's complicated. We're mishpocha, as our people say. Family. He's in a tough situation or, rather, he and his wife are in a tough situation. So I'm helping. By driving, for instance. Dialysis wipes you out. The last thing you want to do when it's done is fight your way through Boston's nightmare traffic for an hour, with its madness-inducing roundabouts.

     "Home isn't a place — it's a feeling," enthuses a five-foot sign by the front door, showing a beaming gray haired man hugging two kids. "Talk to your care team about the benefits of home dialysis." 

     There are a dozen similar signs scattered around the facility, reminding patients of the comforts of home. Dialysis is expensive — up to $1,000 a week, when conducted at a place like this one – not only nicer than nearby centers, but home to Harry's topnotch nephrologist, aka, kidney doctor. Conducting the process at home halves the cost. The centers earn a little less, but they spend a lot less, so end up making even more money with even less effort. You get to stay home, and jam yourself with needles before running a complex medical device. For three hours a day. Five days a week.

     Conducting dialysis at home puts pressure on spouses, who are not usually trained medical professionals. Harry's wife actually is a trained medical professional — a hospital pharmacist. But years of caring for Harry had started to grind her down. That's why Harry started to go back to Fresenius — to give her a respite, the relief that all caregivers must have. And why I'm here, the cavalry, helping out.

     Harry settles into a beige Naugahyde recliner designed for durability rather than comfort, while Ryan, a nurse in blue scrubs, contemplates his left arm.

     "Okay, so we're going in here, and here. We need two dull needles."

     At first I think he's joking. Dull needles? Because, counter-intuitively, dull needles hurt less, sliding into the scar tissue "buttonholes" created by years of dialysis, while sharp needles have a way of carving a new, painful, path. 

     Though they still hurt. Ryan helps with what Harry sometimes calls "the stabby-stab part."

     "Eh, ehh, ehhh," Harry says, voice rising in pain as the dull needle is pushed in.

     "No pain, no gain," says Ryan, brightly, clipping the clear tubing together. The lines go red with Harry's blood. "Good job!" 

     "Pain is just weakness leaving the body," says Harry, playing along.

     To his left, a NxStage Hemiodialysis Machine. A beige cube about a foot wide, it's a glorified filter that takes his blood and removes the toxins — molecules of uric acid are much smaller than red or white corpuscles, so they pass through a membrane while the blood cells don't. 

     The machine thrums.

     Two million people worldwide are on dialysis for kidney failure. They are the lucky ones, because an estimated 20 million people need it, can't get it, and so die of the raft of medical problems that come with untreated kidney disease. If your kidneys can't remove waste, it builds up in your body, poisoning you. If your kidneys can't pass liquid efficiently, fluid also builds up — your lungs fill. You literally drown, slowly. It's a bad end.

     But dialysis kills you too, only more slowly. The human body is not designed to have all its blood drawn out and then pumped back in on a regular basis. It puts strain on the heart. Low blood pressure can lead to agonizing muscle cramps. Blood clots form. After five years, half of the patients on dialysis are dead. Harry has been on dialysis for three years, and suffered a series of medical crises. The clock is ticking.

     His kidneys were ruined 20 years ago, after he was diagnosed with fourth stage colon cancer. The doctors told him to go home, get his affairs in order, and die. His condition had a 4 percent survival rate.

     Instead he fought it — Harry is nothing if not a fighter. He has a lot to live for – two fantastic daughters to watch grow up, a wife he adores, a career he'd like to get back to. So survive he did. But chemotherapy is notoriously hard on kidneys — the chemicals that destroy tumors take their revenge leaving the body. The cancer was gone, but replaced by kidney failure. I thought of "Raiders of the Lost Ark." You escape being crushed by the giant stone ball, only to come face to face with the Amazon tribe and their poison darts. Thanks fate!

    What he really needs is not a lift to Mystic Avenue, but a new kidney. Honestly, I wasn't wild about stepping up to give one of mine. Selflessness is not a defining characteristic in our family.

     But someone had to, and if that someone was me, well, okay. I filled out the form as a potential donor. A year passed. Nothing — the network of donation is notoriously inefficient. I reapplied. Massachusetts General Hospital spat me back. Nope, not you. They don't say why. It wasn't just me. MassGeneral turned down at least six potential donors for Harry — myself, his wife, his sister, his daughters. Several friends. 

     If anybody reading this wants to give Harry a kidney, let me tell you, I've interviewed a number of kidney donors, and they uniformly insist it's the best thing they ever did. Hands down. I asked one if she had any regrets, and she said her only regret was that she couldn't give the other one too. If you ever wanted to be a hero and save a life, this is your chance.

     Until then, dialysis.

     The machine thrums — thwip thwip thwip thwip. An administrator swings by to see when Harry will return to home dialysis.

     "I want you all to be comfortable going home..." she says, meaning, if you blow away the smoke, "I want you home."

     The hours pass. Harry dozes. Sometimes his left leg twitches — muscle spasms are common. We enter into the fourth hour. "The home stretch!" Harry enthuses. Finally it's time to unhook and go home.

     "He did great, fantastic, not a single alarm," says Ryan, fussing with the machine. I ask Ryan what he's learned from years of administering dialysis to thousands of patients such as Harry. He thinks.

     "Just like most things that suck, it's your attitude towards it," he says.

     Can't argue that. Though if we want to argue, we can do so when we come back tomorrow at 7 a.m.