Following is the
article that appeared about me and kidney donation in the Cal State Long Beach student newspaper. The reporter told me that 300 words had to be cut from his copy, but still he was given a good amount of space to tell the story.
Not everything here is quite accurate, but all said, I am happy that the article was run. I'm sure it will raise awareness and may inspire students, faculty, and staff who read it to become donors. That is what's most important. I heartily thank David, the reporter, for his efforts toward that end.
Health, happiness and a hell of a spirit
By David Cowan
Published: Wednesday, September 1, 2010
Updated: Thursday, September 2, 2010 02:09
Heidi Nye looks like a picture of health. Sitting in a large brown leather chair, her small dog Rasputin — a pound rescue — sleeps quietly in her lap. She’s smiling. Even on the hot August day, Nye’s mood is high and her spirit is energetic.
Looks can be deceiving. Nye has had Type 1 diabetes for almost 40 years and will need a kidney transplant if she wants to live another 40. Yet Nye remains optimistic and considers herself a romantic.
“Even with the dialysis thing, I would meet the man of my dreams, and he would give me a kidney,” Nye jokes. “I look healthier and lot of that is attitude.”
Nye was an adjunct professor of journalism at Cal State Long Beach from 1987-2009 teaching between one to five classes almost every semester of those 20 years.
“I was given the opportunity to teach by Larry Meyer, so I started and got asked back and asked back and asked back,” Nye said. “Teaching, it’s like being in love, when things are working right.”
To this day, Nye still maintains a close relationship with former students.
Defining the disease
“Type 1 diabetes is the most severe type, the pancreas is not working” Nye explains. “Most people have Type 2 which means that their pancreas is overworking.”
Doctors estimate that there are about 23.6 million people with diabetes in America, but only 18 million have been diagnosed with the condition. Nearly 90 percent of those diabetics are Type 2. With changes to lifestyle and weight loss, Type 2 diabetes can normally be reversed. Nye is not so lucky and, for years, used an insulin pump. An insulin pump is an alternative to multiple daily injections of insulin by insulin syringe or an insulin pen. The pump releases a continuous insulin supply.
“Someone will say on TV that we’ve done wonders for [the treatment of] diabetes, but not for Type 1,” Nye said. “They solve Type 2 by putting people on better diets.”
Nye describes a bad insulin reaction as a near death experience, depending on how far gone you are.
“You get adrenalin sweats and it feels like you’re going to die if you don’t get something to eat,” Nye said. “It’s the adrenaline rush, the fight or flight…that wreaks havoc on the body.”
Dawn of dialysis
Initially, Nye was dead set against the idea of dialysis.
“I’m not going to do it,” Nye said she once claimed. “I’d prefer to die.”
However on Feb. 2, 2009 Nye began dialysis. Dialysis is primarily used to provide an artificial replacement for lost kidney function in people with renal failure. It is an imperfect treatment to replace kidney function because it does not correct the endocrine functions of the kidney.
It was “10 years building up to dialysis,” Nye said. “I don’t know how I got up — getting dressed would exhaust me.”
It was little wonder Nye was exhausted, in the last decade she was basically a workaholic filling her days teaching, working, editing and taking shifts as a massage therapist.
“It’s something to do with your hands and very spiritual,” Nye said.
During this time, Nye was working 7 days a week and also fulfilling her mom duties with her son who was going through junior high and high school. All this time, fluids were building up in her body.
What are sick people?
“People have different ideas of what sick people are, whether they should try avoidance or pity,” Nye said. “You learn to take care of yourself and I developed a positive nature.”
Nye has since been put on a waitlist for a kidney donation. In California, the wait for a type O kidney is 10 years. The lifespan of a person on dialysis is about 5 years. The waitlist for a kidney in Oregon, however, is only three years.
"People talk about moving to Oregon for the weather, I might move there for a kidney,” Nye said.
Even if Nye were to get a kidney, issues within the health care system make it difficult to keep.
“As soon as you’re on dialysis, you go on Medicare, however, you lose Medicare one year after you get a transplant,” Nye said. “You get off Medicare, you get off your immunosuppressants, you get back on dialysis.”
Immunosuppression involves an act that reduces the activation or efficacy of the immune system. Deliberately induced immunosuppression is generally done to prevent the body from rejecting an organ transplant, treating graft-versus-host disease after a bone marrow transplant.
Treatment
To fend off kidney failure, Nye undergoes the nightly process of peritoneal dialysis, where fluid is introduced through a permanent tube in the abdomen and flushed out every night while she sleeps. PD is used as an alternative to hemodialysis though it is far less common. It has comparable risks and expenses, but on the upside, Nye doesn’t have to get treatment from a medical facility. A major complication with PD is a risk of infection due to a permanent tube in the abdomen.
Nye’s dialysis machine is in her bedroom, which contains her bed, her dialysis machine, air purifier and several dozen boxes filled with glucose solution.
Watching Nye prepare her dialysis is as mesmerizing as it is meticulous. Nye begins by taking her blood pressure to “regulate the fluid balance.” After thoroughly scrubbing her hands with an antibacterial soap, she sprays the “cycler” down with Lysol disinfectant to ensure a sterile environment.
Now it’s time for a second round of scrubbing. This time, she also uses disinfectant wipes on each of her fingers. Her mood resembles some sort of deep meditation — focused but serene. She easily lifts two 5-liter bags of dialysis solution and a single liter of primer that will wash the impurities out of her blood later that night. Between the draining of the fluids in her system and the cycling of the new solution, the process takes 9-10 hours.
Finally, Nye puts on latex gloves and a surgical mask to protect against any other possible infection. She turns the machine on and normally waits for 30 minutes to heat the solution.
“When I change my dressing, I have a surgical mask on and I scrub with antibacterial soap and hydrogen peroxide,” Nye says about her permanent abdominal tube. “Having tape on your body 24/7 for 18 months, it itches and has the possibility of fungal or bacterial infection.”
Nye’s bedroom is unique for one other reason.
“I wanted a dog for companionship, but the dog stays away from the bedroom,” Nye said, keeping a close eye on Rasputin. The dog sits by the door, looking longingly into the forbidden room, mildly intimidated by the air purifier.
Incentive to change
Despite her health issues, Nye still leads an active lifestyle and has offers to continue teaching.
"Just the other day, I got a call from Dominguez Hills asking me to teach, with three days before the semester starts,” Nye said.
But Nye is working to raise awareness about organ donation as part of the Alliance for Organ Donor Incentives.
While The Alliance desires incentives for organ donors, they clearly state on their website organdonorincentives.org, “We are not proposing that private wealthy people should be allowed to buy organs or that money be waved in front of people who are desperate for money. For anyone who needs cash in a hurry, donating an organ under this proposal will not satisfy their need.”
Nye is currently the secretary of The Alliance and does several jobs from her home in order to raise awareness.
"I began tweeting as ‘dialysisdoll,’ posting news items, trying to say something significant in 140 characters,” Nye said. Nye also uses Facebook and maintains a blog, heidisheart.blogspot.com, to promote donor incentives.
“We should treat [organ donors] as heroes, we pay firefighters well for public services, that is something society values” Nye says. “[Donors] are saving lives, this is good for society.”
The journey continues
Nye met Robbie Berman, president of The Alliance, at a speaking engagement in Los Angeles, where he thought she’d be a good face for the organization as she is outwardly very healthy looking, despite being on dialysis. Eventually the two became involved in an HBO documentary about organ donation. It was during the filming in New York that Nye broke her hip and was hospitalized.
“The dialysis makes my bones brittle,” Nye explains. “The doctor in New York told me that if I wasn’t on dialysis, I would have fallen and gotten back up again.”
It was during her hospital stay that Nye tripped and broke her hip a second time. Even with the pain, Nye managed to look at the experience in a positive way.
“It was good filmmaking in the life of a dialysis patient,” Nye said. “We may look bright and vibrant, but we’re frail.”
The filming stopped and has been on hold for several months. Nye has heard that several other people who were involved in the documentary have since died waiting for an organ donation.
A Glimmer of Hope
In Phoenix, Arizona, a woman named Cindy has the type O kidney that Nye would need to get off dialysis permanently. Cindy’s brother received a kidney from a donor and now wants to be a donor herself. Nye and Cindy share one more coincidence, Cindy’s friend is a former student of Nye’s at CSULB.
Despite the astronomical odds that connect Cindy to Nye, there’s still much to be done and Nye remains cautious.
“I had a surgery scheduled with a neighbor [for a donation] but we just missed out with the final cross match,” Nye said, undeterred by the narrow miss. “We always say potential donor, people back-out, there are problems with cross matching. We’re asking people to give out of the kindness of their hearts.”
The two are still trading emails and haven’t yet talked on the phone.
Even if Nye gets a kidney, she says she plans to continue being an advocate for donor incentives.
In the end, Nye sums up her philosophy about life simply.
"It’s more about chutzpah than about health.”
For information on becoming a donor go to lifesharers.com or donatelifecalifornia.org.
