Dialysis patient takes control of her own care
Perhaps knowing her destiny with a hereditary kidney disease led Anna Bennett to try to bring as much adventure into her life as she could. Her passport is filled with stamps from Egypt, Belgium and England.
By Kate McNeil
Last winter, Kingsbridge resident Anna Bennett was aching for a vacation. So she rallied her friends and planned a jaunt to Montana, to "chase boys." But shortly before the girls-gone-wild weekend, Ms. Bennett came down with something.
To be cautious, she visited her doctor, thinking it was just a cold. But what Dr. Walter Wasser would tell her was much more serious. At 41, three years shy of the age of her mother's death, Ms. Bennett had to begin dialysis, an exhausting clinical purification of blood to substitute for failing kidneys.
She had no choice but to shelve her plans for big sky country and substitute nine months of almost daily visits to Lifecare, an Upper West Side dialysis clinic. Ms. Bennett's free spirit was draining away. Surely there could be another way, she thought.
New technology has brought dialysis right into the homes of many patients, but a complicated series of procedures makes it nearly impossible to do alone. That didn't deter Ms. Bennett, who, in October became only the second person in New York to self-dialyze without the help of a nurse or caregiver.
Five days a week, she settles into a comfortable lounge chair to filter her blood. Tuesday through Thursday it's a two-and-a-half-hour task. Saturdays and Sundays are three-and-a-half-hour marathons. Mondays and Fridays are her days off.
Simply put, "weekdays are for TiVo and weekends are for Netflix," she laughed.
Dialysis was inevitable for Ms. Bennett, who was diagnosed at birth with the same condition that killed her mother - Polycystic Kidney Disease - causing clusters of cysts to develop on her kidneys.
Perhaps this inescapable destiny is what led Ms. Bennett to a life of adventure. Her travel journal is filled with the spontaneous jaunts just like the Montana trip.
In the early 1990s, the Maine native broke up with her boyfriend, sold her car and jetted off to Europe where she found work as a nanny and a show horse groom. Her passport is filled with stamps from Egypt, Belgium and England.
In 1997, she returned to the States to study film at New York University. Sensing a calm before the storm, Ms. Bennett applied for a job as a career-counseling secretary for a Manhattan law school.
"I needed benefits," she admitted.
Little did she know her at-home treatments would bill her insurance provider a hefty $40,000 a month just to keep her alive.
More than 10 years later, Ms. Bennett still makes the long commute on the No. 1 train to her Greenwich Village job. Every other month, as she did on Feb. 28, she telecommutes so she'll be home for a special FedEx delivery.
"When I got my first delivery I was in tears," she said, surveying her cozy one-bedroom apartment in a two-family home on West 231st Street. Cardboard boxes of saline bags have become her serving table, an $18,000 NxStage dialysis machine her side table and a hospital cart chock full of needles, gauze and tubes is her coffee table. And closet space? Fuggedaboutit. Every square inch of space is used for medical supplies.
On a pedestal, both literally and figuratively, is her TV, which helps her escape life's unfairness. Ironically, her favorite shows take place in hospitals - House and ER.
"Have you noticed they cure everything with dialysis on those shows?" she asked. "I yell at the TV when they do it wrong."
'This hurts'
"I won't lie, this hurts," she said as she carefully inserts a large needle into her vein.
Before her blood can be filtered, Ms. Bennett goes through a laundry list of preparatory tasks - weighing herself, taking her blood pressure, hooking up tubes, injecting heparin into thin her blood.
For her frequent dialysis, Ms. Bennett's doctor clustered veins in her arm to make a "super vein" or as she calls it, a "garden hose." She also has a "button hole" similar to a pierced ear in her upper arm, for easy access and minimal pain.
Because she goes it alone, Ms. Bennett has to be almost obsessive-compulsive about her actions, double-checking for air bubbles in the tubes that could kill her, sanitizing anything and everything. Perhaps more importantly, she makes sure her remote, laptop and cell phone are handy.
After six months of self-dialyzing, Ms. Bennett is herself a professional, barely batting an eye while a vat of 283 cups of her blood is filtered five days a week. (Healthy kidneys filter about 845 cups of blood per day).
That's not to say she likes it: "Imagine this at 9:30 after a bad day at work," she said. "That was last night. And I can't play hooky with dialysis."
Once hooked up to the machine, Ms. Bennett surfs the Internet (she's a frequent contributor to
www.ihatedialysis. com), watches TV or chats with friends, breaking every 20 minutes to jot down her vital signs to fax to her nurse the next day.
"If someone knocks on the door, tough luck," she said, her arm entangled in dozens of tubes.
She hopes to invest in a La- Z-Boy soon because the $100 chair she bought on Craigslist isn't holding up so well. Some days her living room can "look like a murder scene" with spattered blood on the floor and walls, but Ms. Bennett will take that over the gloomy clinic any day.
"It's not as depressing," she said. "You're not going into a clinic and watching people die."
Although she has a 24-hour nurse on speed dial in case of emergencies, she often finds herself calling Bill Peckham, a Seattle man who has been on dialysis for 17 years, seven of those years at home.
"He's my rockstar," she said.
But Mr. Peckham couldn't help the one time she left a pot of chicken broth on the stove and had to unhook all her tubes to turn off the gas. Or the time she dropped the pen she uses to record her blood pressure. These are the times she wishes she had a partner.
"I'm looking for one," she said, smiling.
Awaiting a donor
Another thing she's looking for is a kidney donor.
"It'd be nice if some distant cousin got in a motorcycle accident or something," she quipped.
Ms. Bennett has been on the waiting list for a kidney at St. Luke's Hospital in Manhattan since June 2005. The waiting list is not governed by the old adage of first-come, first-served. Rather, a "perfect match" must be found for each patient, meaning bottom-ofthe- list patients may get their needed transplant before Ms. Bennett.
But while she waits for her transplant, Ms. Bennett doesn't let dialysis weigh her down.
"I don't have time to feel terrible all the time," she said. "I'm sick but if you saw me on the train you'd have no idea."
Lifecare uses Ms. Bennett as an ambassador to counsel other patients considering athome dialysis.
"Kidney disease hits everyone," she said. "There's no common denominator. When patients are scared, that's when they hurt themselves. Dialysis is not the end of life, it's actually prolonging life."
The hardest thing, she said, is nursing her travel itch. But she still has a raincheck on that chasing cowboys trip and is confident she'll make it.
UPDATE: The phone call for a transplant came on 11/2/2008 Details here: http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492http://www.riverdalepress.com/printfull.php?sid=3370¤t_edition=2008-03-06
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