*Lisa is a NxStage Patient Advocate
Every weekday, Lisa Love gets behind the wheel of a yellow bus and brings special needs children to and from school. It’s a job that suits her, for several reasons. She loves kids, the hours are great, and as a CKD patient, she feels a strong connection to her passengers and their families.
“When you’re on dialysis it’s a disability,” says Lisa. “And to see these kids get back up continuously, and their parents making sure there’s normalcy in their lives … it’s a special gift to be able to take care of their kids the way they do.”
Lisa knows what it’s like to care for others and be cared for. In her mid-thirties, her kidneys failed and she had no choice but to start dialysis. Ever since, she has relied on her doctors, her faith, and the love and support of her family to stay healthy and positive. In recent years, Lisa received a kidney transplant and – as a NxStage Patient Advocate – is telling her story to help others.
In-center dialysis was how Lisa began her kidney disease journey, but not much about the experience agreed with her. She didn’t like traveling for treatments, had problems with cramping, and was tired much of the time. There were times when she felt too exhausted to walk around the grocery store, but also felt self-conscious about using an electric cart.
“A lot of people look at your appearance and they see riding a cart as being lazy,” she recalls. “My husband said, ‘That’s OK, I’ll grab one too and chase you around.”’
Support from her husband Blake and their daughters was a constant. They even went along for her dialysis appointments. So, when she began to consider switching to home hemodialysis (HHD), she knew she could count on them.
“HHD sounded scary but it sounded doable,” she remembers. “I had them read a pamphlet about it and we all said, ‘I think we can do this.’ Everybody was on board!”
Next Lisa trained for more frequent HHD and made the transition home without any hiccups. She says she noticed a difference in her health and stamina almost immediately, once she started treating more frequently.
“After one week of training, everything I read about I started to receive,” says Lisa.
Once dialyzing at home, Lisa had more time and energy for things like cooking and interior decorating (two favorite hobbies), helping with Blake’s lawn care business, family activities, and something else very important to her – travel.
“We didn’t take vacations when I was growing up. I didn’t get that experience at a young age,” recalls Lisa. “Other kids would come back from spring or Christmas break and talk about being in Disney or Hawaii. So I always said once I grow up and have kids, I want to take them on vacations so they would have their own stories.”
The family has made good on that goal over the years, taking annual cruises and trips to the Virgin Islands, St. Martin, Mexico, and more. Trips that Lisa thought she might have to give up as a dialysis patient.
“I felt like that part of my life was over with,” she says.
But due to the portability of her NxStage System One S, Lisa was able to continue visiting favorite destinations with her family. She remembers her first cruise as an HHD patient and how it felt when she got to her cabin.†
“That was a joyful moment to walk in and see all my supplies there, just knowing the program they designed to help people really works!” she says.
Lisa performed more frequent HHD for three years, and her health and quality of life improved to a level where her doctor began encouraging her to look into transplantation.
Reluctant at first, Lisa told her care team she was happy on HHD and didn’t want to do anything that might change how she was feeling and living. But soon she was persuaded to get on the list, assuming she might spend years waiting for a kidney. Shockingly, it was just a matter of months before a match was found.
“I had a transplant!” she says excitedly. “And I think working with the home team, keeping my labs up, and working with my dietician and care team really played a role in my being ready.”
Three years later, Lisa says she is feeling good, traveling more, driving the bus, and spreading the word about HHD wherever she goes.
“If you’re on dialysis, you have to do your treatments,” she says frankly. “There’s no way out of it, but there may be a better way. And that’s what I tell people. Just like when you go to a restaurant or sale at a clothing store, we take our experiences and tell people about it hoping that they get the same desired outcome. That’s what I want for the people I speak to.”
*Not all patient may experience these benefits
† Equipment swaps and supply deliveries are NOT possible at sea and at most ports of call so make sure you and your care team have a backup plan.