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...everything you need to know about doing dialysis at home.
When she was just 18 years old, Vanessa’s kidneys failed. To this day she is not sure why. Her doctors think a childhood infection may have caused the scarring and damage…but there is no real proof.
Although Vanessa didn’t know why her kidneys were failing, she did know what was coming. So, she was able to prepare. She received a kidney transplant from her mom for high school graduation (1991), and went off to college the next September just like all her friends.
Her transplant worked well, and she finished college—and, as a native Spanish speaker, even spent a semester in Seville, Spain. Doctors there warned her that she was taking too much cyclosporine (the anti-rejection drug). As it turned out, they were right.
After graduation, Vanessa got a job in the financial industry, but she was starting to feel ill. “I didn’t recognize the signs,” she noted, ” because I never had any symptoms of kidney failure before my transplant.” So, Vanessa kept pushing herself through nausea, dizziness, and fatigue. Then, one day at lunch, Vanessa walked into a free blood pressure screening clinic. “My blood pressure was so high—200/100—that they wouldn’t let me leave,” she recalled. “They sent me straight to the hospital.”
Luckily, Vanessa had a “just-in-case” vascular access in place. She was able to get dialysis, and begin the next chapter of her life.
“In 1996, I didn’t understand the world of dialysis,” Vanessa recalled. “I thought I could schedule my treatments when I wanted.” Wrong. The time slots the clinic had open forced Vanessa to give up her job. “I had to quit,” she said.
She moved back in with her parents. “My mom gave me 6 months to get used to dialysis and then she told me I had to do something. So, I started to volunteer at a nonprofit agency that was helping Spanish-speaking immigrants.”
“Volunteering brought me into the world of teaching,” said Vanessa. “I applied for a part-time job as a Spanish teacher.” Since she taught for just 2 hours a day, Vanessa was able to get to dialysis and work. She kept that job for 4 years.
Friends introduced Vanessa to Paul, and the two fell in love. Wedding plans meant big changes for Vanessa. She had to move to a new city so Paul could commute to his job, switch clinics after 5 years, and find a new job. With her typical resolve, Vanessa got busy. She went back to school to get a teaching certificate. She applied for part-time teaching jobs in her new town, and found a new dialysis clinic.
Vanessa and Paul got married on a beautiful summer day in 2001, but things did not go as planned! Vanessa’s fistula had clotted (due to a fall on the day before the wedding), and she was ill. “I had to go to three emergency rooms that day, and I threw up during my whole wedding,” she added. The very next day she checked into Massachusetts General Hospital for dialysis with a catheter, and surgery for a new fistula. She was in the hospital for a week. “I was so depressed,” recalled Vanessa. “I was in the hospital instead of on my honeymoon.”
Luckily, Paul was very understanding. “Ever since we met, I’ve been on dialysis,” noted Vanessa. “This is something he has known about me since the beginning.”
Sometime in 2005, Vanessa learned that dialysis could be done at home. She called NxStage, maker of a home machine, and their training nurse told her all about the new option. “They really accommodated me and my husband,” Vanessa explains. “They came to my house to train us in the evenings because he couldn’t take off work.”
During the first month of home dialysis, Vanessa thought, “What the heck did I get myself into?!” Taking on all of the steps from blood draws to supply shipments was a little overwhelming at first. But, 5 years later, she admits that she “would not be OK” with going back to the unit: “A lot of people there die. They’re very sick; I don’t miss it at all.”
Now Vanessa does her treatments at home 5 days a week, mainly in the early evening. While she dialyzes, she can read to her sons, or play games with them. “They can sit in my lap while the machine is on,” she said. Her husband lends a hand with some of the tasks, but often works out in the basement during her treatments.
During the days, Vanessa runs her own businesses from home. She coordinates “My Little Lingo” Spanish language summer camp programs for pre-schoolers, and is also starting a new high-tech recruiting business. “I like it because I can work from home,” she noted. On top of her professional work, Vanessa is mom to two very active little boys, whom she and her husband had through a surrogate.
Vanessa is on the transplant list, but says, “if I knew my fistula would work forever, I would be OK with home hemodialysis—because I can do anything that I want.”
Her advice to others who are thinking about short daily home hemo? “Try it! You have to be patient, but it really does give you your life back.”
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