“How do I stay in charge?”
Staying mobile thanks to technology
Anvil Nelson Jr. is a man in perpetual motion. The entrepreneur runs his own chemical manufacturing company in the city of Chattanooga, a two-and-a-half-hour commute from his hometown of Nashville, Tennessee. He is a member of the board of the local Nashville rescue mission, which provides food, lodging, and training for people in need. He also sits on the board of the Tennessee Kidney Foundation that offers screenings, education, and help with transportation for patients with renal disease.
What is more, Nelson has held a leadership role at his local church for more than two decades. He also officiates at track and field competitions for state tournaments and at college meets. Last but not least, Nelson wants to spend quality time with his wife and two grown children who live nearby. After ticking off that comprehensive list, he concludes with a chuckle: “I have a pretty busy life. My family actually thinks I’m too busy.”
So busy, in fact, that Nelson admits he almost left out one crucial detail that has become part of his weekly routine. Since losing both kidneys to tumors, he has to undergo dialysis and uses a portable home hemodialysis machine by NxStage from Fresenius Medical Care, to filter his blood. “Dialysis has changed my life, for sure, but not my outlook on life and my ability to stay mobile. I wouldn’t even know I was ill if I didn’t have to take a pause, sit down and do dialysis several times a week,” he says.
It is this message of optimism and empowerment that Nelson wants to spread far and wide to encourage and motivate other dialysis patients to research their best treatment options, so they can stay as independent and active as possible. “Some people feel like their life is over when they start dialysis, but not me!” he says. “I’ve found that it’s really just a matter of making a mental adjustment to be able to keep on living your life and stay mobile. That’s a blessing.”
A rough ride
Looking for the best option
While he was still recovering from surgery, Nelson was already devising a plan to get his life back on track. Initially, he had to travel to a dialysis center three times a week for his treatment. “It was very rigorous, because you had to schedule it and stay there for a few hours. I booked my treatments for 5 a.m. on Mondays, Wednesdays and Fridays, so I could use the rest of the day, but that meant getting up around 4 o’clock in the morning to drive there.” In spite of his original expectations, Nelson found that the treatment schedule interfered too much with his many other obligations. “After getting treatment, you need time to recover. Often, I couldn’t even manage to drive to work in Chattanooga on Mondays after dialysis because I had to rest.”
So, Nelson told his doctor he needed to explore his options. “I wanted to keep on living my life and not be tied to a center. That’s why I initially considered peritoneal dialysis as it was the only way I could continue working as usual. But then,” he adds, “I heard about home hemodialysis!”
Dialysis has changed my life, for sure, but not my outlook on life and my ability to stay mobile.
Home hemodialysis patient Tennessee, U.S.
Nelson found the System One home dialysis machine made by NxStage from Fresenius Medical Care and watched tutorials showing how it worked. “It was an amazing discovery, and I wanted to find out even more.” Shortly afterwards, he was sitting in his treatment chair at the local center, when his phone rang. It was an expert from the NxStage team, and Nelson ended up talking to her for an hour and peppering her with detailed questions. “I decided to go for it and asked my doctor to sign me up for the required training sessions right away.”
Within a week and because his wife provided him with ongoing and passionate support, Nelson was able to start his training on how to use the System One. This involved instruction by experts at a dialysis center, followed by supervised use. Very quickly, he felt comfortable enough to prepare and connect the machine by himself.
Integration into daily life
Nelson’s wife Deneice or one of his children always try to make time to be available as his care partner – a routine the family has maintained even as Nelson has continued tending to affairs at his company in Chattanooga. On Mondays, he drives to Chattanooga to be on-site at his company and is joined by his wife the next day at the apartment he rents there. “She is always there for me, gets the machine ready and makes us something to eat while I finish up work.”
As a result of the home dialysis training, his wife has also adjusted her schedule to make time as his care partner. That means preparing the machine on Thursdays and Fridays when he is back at home in Nashville. “I don’t want to make it sound too rosy,“ Nelson says, “but home dialysis is a great opportunity. I can really get on with my life, run my business, and even travel.”
Home dialysis in the long term
Many experts agree that home dialysis can provide better outcomes for patients and therefore could be the best treatment option for many patients. In reality, however, only about 12 percent of patients worldwide currently receive home dialysis. Fresenius Medical Care has pledged to significantly increase the percentage of patients choosing home therapies and announced in North America a record growth in home dialysis in the six months since the acquisition of NxStage. The shift is part of a larger transformation in care for chronically ill people.
Nelson has already planned his next move. He wants to receive additional training so that he can perform his home dialysis all by himself. There will still be safeguards in place, of course. The machine offers remote monitoring and the option to call a hotline with any questions. It also comes with an app and troubleshoot error codes to look up on a smartphone or tablet.
Yet in the end, Nelson admits, he cherishes the time he can spend with his children or his wife by his side while the portable device does its work. It is a welcome breather in his busy schedule. “Your family’s support is the most important thing you can have as a patient. But I don’t see why they should put their life on hold for me just in case I need them.”