At first glance, Juan Camacho and Sonja Carter live their lives like many others. Juan is a certified heating and cooling technician who owns his own company; Sonja is a client services manager for a company that supplies weatherization assistance to low-income residents in Denver and Jefferson counties. They both have grown children and look forward to many productive and fulfilling years ahead.
Yet in at least one important way, Juan and Sonja’s lives are very different from and more challenging than most others. They each have failing kidneys that require them to mechanically filter waste from their blood on a regular basis through dialysis. It’s a lifesaving job they share with some 470,000 people in the United States.
Unlike a large majority of those on dialysis, however, Juan and Sonja don’t travel to centers to sit in chairs next to others as dialysis machines churn through their blood-filtering work. They are among the roughly one in eight dialysis patients who perform the task at home. It required careful training and commitment, but both say home dialysis has allowed them to retain a measure of control over a tyrannical disease.
Choosing dialysis at home over a center
Both Juan and Sonja noted their desire to find an alternative to spending four-hour sessions three days a week at a dialysis center.
“I have to commit three to three-and-a-half hours of my day to the treatment,” Juan said. “But the beauty of it is I can do it depending on my schedule. Either I get up early to do it or I do it after work. I can work to sustain my lifestyle.”
Sonja, who said she watched her mother go through dialysis treatments in a center, said she knew that wasn’t the route for her.
“I didn’t want to go to a center,” she said. “I don’t have the time. I don’t want to just exist. I have a life.”
Home dialysis decision requires consideration
Juan and Sonja perform their dialysis with different methods, and both received training at the UCHealth Home Dialysis Clinic at UCHealth University of Colorado Hospital on the Anschutz Medical Campus. Dr. Isaac Teitelbaum, a nephrologist and medical director of the clinic since 1986, said the number of home dialysis patients locally and nationally could be much higher, but acknowledged the approach isn’t for everyone.
“The big consideration is that the patient desires to assume responsibility for their own care, with all the attendant obligations that come with that,” Teitelbaum said. “That’s in exchange for acquiring much more flexibility over their lifestyle and freedom from being required to be in a certain place at a certain time.” That’s especially attractive to patients who live in rural areas far from dialysis centers – sometimes 100 miles or more one way, he added.
Still, some patients may prefer to let a center handle their care, while others may find having to handle needles is “a non-starter” or shy away from the psychological burden of seeing machines that remind them of their kidney disease every day, Teitelbaum said.
“Dialysis is a challenge for anybody,” he noted. “It’s tough psychologically knowing that you are bound to this machine and a procedure for the rest of your life.”
Two approaches to home dialysis
There are two main types of home dialysis, either of which “can allow patients to achieve the same degree of longevity,” Teitelbaum said. Peritoneal dialysis involves a catheter surgically inserted in the abdomen. A solution of salt and other substances flows from a bag attached to the catheter into the abdomen. The solution dwells in the abdomen for a period of time, during which it and the lining of the abdomen, or peritoneum, cleanse the blood. The patient then drains the used solution and repeats the process is repeated.
Patients who choose peritoneal dialysis can either do the filling and draining of the abdomen themselves several times a day or do it overnight, with the work done by an automated machine. Sonja Carter opted for the automated approach. She sets up the machine before bed, then allows it to do its job for about nine hours before she gets up and readies herself for work. Before leaving, she fills her abdomen with a fresh supply of solution, which takes her through her day.
In-home hemodialysis, which Juan Camacho chose, patients use a machine called a dialyzer to do the work of the kidneys and filter the blood. The approach requires surgery to create access through which blood can flow from the body to the dialyzer and back. The preferred method is an arteriovenous fistula, which a vascular surgeon forms by connecting an artery to a vein, the vessel that carries blood to the dialyzer. Over time – about eight to 12 weeks – the vein strengthens and widens, making it easier to accommodate a needle for dialysis. Patients can perform home hemodialysis in a variety of ways, ranging from three to seven days a week and for different lengths of time and periods of the day.
Extensive training required for home dialysis
Regardless of which method they choose, however, home dialysis patients must get extensive training before they receive approval to take on the responsibilities themselves. Currently, some 55 UCHealth clinic patients are doing so.
“If at the end of training I don’t feel you are competent, I will not send you home,” said Lisa Harman, a UCHealth home dialysis nurse.
Home hemodialysis training takes much longer than peritoneal dialysis – no less than 15 days, Harman said, versus five to eight. But she emphasized that the time allotted for education and evaluation depends on the patient’s understanding and confidence in operating the equipment. There is no hard-and-fast timeline.
“I tell patients the training times are the bare minimum, not the maximum,” Harman said. “You have to be comfortable and I have to be comfortable.”
Harman and the rest of the Home Dialysis Clinic team, including social worker Michelle Fancher, offer patients round-the-clock support for questions about their health and their dialysis equipment, which they may have to pass on to the manufacturers. They also help patients manage their supplies, such as solutions for peritoneal dialysis.
The team also focuses on managing expectations. “Patients didn’t get sick overnight and they’re not going to feel better overnight. They have to give [dialysis] a chance,” Harman said. With regular treatments, the benefits include less fatigue, better sleep, improved appetite – and the chance to eventually get a new kidney.
“We tell patients, ‘Our goal is to help you get to transplant,’” Harman said.
Barriers to home dialysis
So patient preferences and medical requirements aside, what are the primary obstacles to increasing the use of home dialysis? Teitelbaum said it may be safer than in-center dialysis; Harman noted that it is a “gentler therapy” because it spreads out toxin removal over longer periods of time. It is also less expensive, which was just one of many reasons the last presidential administration heavily touted it.
Teitelbaum said one obstacle is “a lack of understanding on the part of other clinicians and even nephrologists” about the benefits of home dialysis.
“There is a misconception that the quality of care for home dialysis patients isn’t as good,” he said. He also noted a shortage of adequately trained nurses, like Lisa Harman, and physicians to educate and assist patients interested in-home treatment.
Teitelbaum has been a leader in addressing that gap. He is a past president of the International Society for Peritoneal Dialysis, an advocacy and education group that publishes a bimonthly journal and hosts a world conference every other year. Most recently he was a faculty member for a two-day Home Dialysis University event, which provided education to a host of providers on both peritoneal and home hemodialysis.
A brush with death before home dialysis
Juan Camacho and Sonja Carter both speak knowledgeably to the benefits and challenges of home dialysis. Their experiences highlight the importance of providers understanding the patient point of view.
Juan was a successful manager living in the San Fernando Valley of California in 2008 when he suddenly experienced allergy-like symptoms that wouldn’t go away. When his vision blurred, he visited an ophthalmologist who saw his blood pressure was alarmingly high and immediately told him to go to the hospital. He was shocked to learn his kidneys were failing. After a few days in the hospital, he asked to go home, where he says he prepared his wife and two kids – then 11 and 13 – for his death.
He spent 33 agonizing days at home, losing weight and vision rapidly, before he decided he had a chance to live and checked back into the hospital. He weighed 120 pounds, down from 175 and looked, as he put it, “like a zombie in ‘The Walking Dead.’”
Nonetheless, he recovered sufficiently to go home – staff referred to him as “The Miracle Man” – and got his dialysis for a year at a center. When he learned there was a possibility of getting a machine and doing his dialysis at home, he began asking his nephrologist how he could get one. None of his providers had ever heard of it – and when he found a hospital in Hollywood that had one of the machines, he discovered that no one there could teach him how to use it.
He ultimately moved his family to Colorado, partly for less expensive housing, but also because he found the University of Colorado Hospital could help him transition to home hemodialysis. That was 12 years ago. He’s never looked back.
“I’ve always been a fighter,” Juan said. “From day 1, I started doing the dialysis myself. I’ve had no issues.”
Accepting the challenges of home dialysis
Sonja frankly acknowledges the sacrifices peritoneal dialysis requires. She uses the automated overnight method because there isn’t a space at work that allows her to drain and fill her bag several times a day. Shortly after getting home from work, she must prepare her machine and is generally in bed no later than 8 p.m. so she can get her needed nine hours of dialysis in time to go back to work.
She has tv, books and a tablet to help pass the time before sleep, but she acknowledges she’s not living the life she would have chosen. The required hours of dialysis are longer than she originally anticipated, and she has boxes of supplies stacked around her house, reminders of her demanding illness.
“The hardest thing is the summer,” Sonja said. “There is a park right behind me, and I hear kids playing basketball, and people walking around, and here I am, upstairs in my bedroom.”
Taking dialysis on the road
But Sonja also refuses to be tied completely to home. She has attended a conference in Basalt, packing up her machine and supplies and doing her dialysis for a week in her hotel without incident. She also recently enjoyed three days with her daughter in Colorado Springs, again without a problem.
Sonja’s big goal is ahead. Her daughter will graduate from CU Boulder next year and wants to go to Florida to celebrate.
“I’m ready to go out of state,” Sonja said. “The company will ship all of my supplies ahead to the hotel.”
Patients are grateful for clinic help
As for the Home Dialysis Clinic, Sonja gives it a “10” for its willingness always to listen to her concerns. That is especially important because she acknowledges that during training, she didn’t know what to ask about dialysis. She thinks one way the clinic could improve care is by hiring an advocate to work with new patients.
For Juan, the clinic, including physicians, nurses, nutritionists and social workers, “has been a blessing.” He adds that he takes responsibility for managing his own care. He carefully weighs himself to make sure his dialysis is properly calibrated and he eats in moderation.
“It’s about knowing your body and the quantity of food and drink you put in,” Juan said.
Home dialysis has helped Juan, Sonja and many other patients retain “a sense of autonomy and personal dignity,” as Teitelbaum puts it. They have refused to let dialysis take dictatorial power over their lives.
“I believe that patients should do dialysis in order to live,” Teitelbaum said. “They ought not live in order to do dialysis.”