When you study its various definitions in the English dictionary, you learn that the word ‘break’ can mean many things–-some negative, others more positive.
For the last few years, Ana, a 30-year-old nurse and student from Texas, has seen the positives defining her world. She is experiencing a much-needed (hopefully permanent) break from 15-plus years of illnesses and medical complications. She also received a “lucky” break of sorts to get there –- a matching kidney and organ donation from her dedicated mom.
These days, Ana describes her life with words like “great” and “amazing.” She travels, attends university online, has a YouTube channel, a passion for photography, and a desire to help others by sharing her story. But in addition to recent victories, that story includes many years of tough breaks, when Ana’s health – and at times her spirit – felt broken, and she relied heavily on her loving family and her strong faith to see her through.
As we recognize Donate Life Month throughout April, stories like Ana’s are a cause for celebration and, we hope, inspiration to those living with kidney disease and in search of their own big break.
Through it All
Ana’s message to those going through kidney disease (or any kind of hardship) is simple:
“The first thing I’d say is please don’t give up. I can’t tell you how many times I wanted to give up,” she says empathetically. “I think it also helps a lot to find someone to talk to. I think people want to help but they don’t know how, so you have to help open their eyes to understand what you’re going through.”
And Ana has been through a lot.
It started with a diagnosis of lupus when she was just 14. The disease was damaging her kidneys, and doctors put her on chemotherapy to suppress her immune system and slow the attack on her organs. Though she was terribly sick and lost her hair, the treatments helped for a couple of years. Nevertheless, by age 17, Ana’s kidneys failed, and she began peritoneal dialysis (PD) to treat her renal disease.
“PD provided a new lease on life,” says Ana. “Since I only did treatments at night and saw my doctor once a month, it allowed me to, somewhat, forget about being sick. Chemo had me spending hours at the doctor’s office multiple times a week, and I was always either sick to my stomach or sick with an infection, due to my suppressed immune system. PD had me feeling better and allowed me to taste a bit of normalcy again.”
Unfortunately, PD therapy was cut short by another illness, cryptococcus – an airborne fungal pneumonia that nearly took her life. Only in her mid-teens, Ana was in and out of the ICU for a month, suffered from delirium, and can’t remember portions of that time period. Once out of the hospital, she had to start hemodialysis in-center.
“It was a really hard time for my whole family and myself,” she says. “But I think the hardest part was going to the clinic. I was still very sick. Because of the pneumonia, I could barely walk and had to lug around this oxygen tank, it was just depressing. And I was already depressed.”
Ups and Downs–and Backups
The mental and physical toll of Ana’s experiences was mounting. She was hitting roadblocks at every turn. Between dialysis and hospitalizations, she fell behind in her schoolwork, which was frustrating and disheartening. At her father’s urging, she opted to hit fast forward and test for her GED, but had doubts about her ability to pass.
“I thought I had brain damage,” she remembers. “I thought I was stupid and wouldn’t be able to study. But I passed the exam with high marks and it made me feel like I could do something. My dad was the one who pushed me to do it. My parents never stopped believing in me.”
Not only did Ana’s family believe in her, they also wanted to contribute to her wellbeing – directly. In 2012, when she was 21, her father Fonzi, donated a kidney to her. There were complications in the first year after surgery, but then 6 ½ years of success.
Ana was able to attend college and spent three years working as a nurse but, sadly, lupus began to affect the new kidney and she was forced to start dialysis again. This time around, she discovered more frequent home hemodialysis (HHD).
“I’m 100% convinced my quality of life was better on HHD,” she says. “I was feeling better; I had more energy to play with my nephew. Plus, it’s nice to be in the comfort of your own home and be in control of your own dialysis schedule.”
Although she did well on HHD, Ana’s family wanted her to consider another transplant, and there was no shortage of offers. An aunt, an uncle, and her mother Regina, age 59, were all willing donors.
“My mom had been willing the whole time, but I didn’t want her to,” says Ana. “To be honest I was hoping for her to be my post-transplant caregiver, and she couldn’t do that if she had surgery too.”
But when it turned out Regina was a match, there was no stopping things. Surgery was scheduled for October 23, 2020.
A New Kidney, a New Story to Tell
“This time there have been no complications, no acute rejections; it’s gone so smooth,” explains Ana as she talks about her very new kidney. “I’ve also noticed little things that have improved. My hair was falling out in handfuls, and right after the transplant it stopped. I used to be pale all the time, and now I actually have color.”
Most exciting, she says, is eating some of her favorite foods again (like fried plantains), drinking coffee, and being able to “use the facilities.”
“I can’t tell you how great it feels to pee again,” she says with a laugh. “Every time I do I think ‘Thank God, that means the kidney’s working!”’
Ana is back in school and looks forward to being a nurse practitioner after graduation. She loves to talk about her hobbies (writing, playing guitar, and knitting among them), her family, and her faith (her dad is pastor of the small Spanish-speaking church she attends). She is also speaking with kidney disease patients, as a NxStage Patient Advocate, about her positive experiences as an HHD patient.
“I want all those other patients to experience that as well,” she says.
And for those who are considering (or waiting for) a transplant, Ana’s opinion is, once again, simple and straightforward.
“Stay on your diet restrictions and do your dialysis treatments,” she says. “It’s not about taking away your independence; it’s about helping you feel the best you can and keeping you as healthy as possible for if and when a transplant becomes available. You’ve got to take care of yourself in the best possible way, and not just physically, but mentally and emotionally as well.”
NxStage Patient Advocates are compensated for their time.
The reported benefits of home hemodialysis (HHD) may not be experienced by all
patients. The NxStage System is a prescription device. All forms of hemodialysis involve
some risks. When vascular access is exposed to more frequent use, infection of the site,
and other access related complications may also be potential risks.