Bill, age 64, was on his yearly Minnesota fishing trip. As he stepped out of the shower one morning, he felt a sudden, "terrific" swelling in his feet and legs. Alarmed, he cut his trip short and drove to the closest large hospital in Duluth. Doctors there found "poor kidney function." They suggested that he make an appointment with a nephrologist—soon.

Bill took that advice to heart and went to see a kidney specialist as soon as he got home to Indianapolis. "I had no experience with any type of kidney problems," Bill said. "So, the doctor did tests and more tests." After a kidney biopsy, Bill got the news that his "kidneys were failing." To this day, he doesn't know why.

Bill changed his diet to try to preserve the kidney function he had left. "I wanted to delay dialysis," he said, "but I may have waited too a little too long." Two years later, Bill was "feeling pretty bad." He chose to start hemodialysis (HD)—3 days a week, at a nearby center.

A real challenge

"I was very lucky, because we had a great group at the center," Bill recalls. "The staff was good and I enjoyed being with them. But, I didn't like being tethered to the center and losing 3 days out of my life each week."

His treatments were less than 4 hours each, but Bill found that "the whole day was shot" by dialysis. "You never know how the schedule is going that day and whether you'll be able to start on time," he said. "Plus, after coming off I felt washed out. Dialysis sucked all the energy out of my body for the rest of the day and sometimes part of the next day."

All in all, "my wife and I functioned and we coped," admitted Bill, "but it was a real challenge."

Finding a way to go home

The notion of doing his own treatments at home had appealed to Bill from the start. But, Bill's rural home was not suited to a standard HD machine. "Our well has a limited capacity," Bill explained. "It could not support the RO (reverse osmosis) water treatment system a standard machine needed."

Bill's nephrologist, Dr. Bloch, told him that he might be able to do home HD—if he switched to Indiana University (IU). As a patient there, Bill could try the NxStage System One machine, which does not need water treatment. "It was a very ethical thing to do," praised Bill. "Even though Dr Block knew he'd lose me as a patient, he helped me to get what I wanted."

So, Bill put his name on the NxStage waiting list at IU. "The list was lengthy!" he added ruefully. While he was waiting, Bill also pursued a transplant. His sister-in-law had offered to give him a kidney and was a good match. "We had the surgery scheduled and I took my name off the home HD waiting list," Bill said. Then, at the last pre-op check, doctors found that Bill's sister-in-law had developed high blood pressure. "We had to cancel the transplant," Bill added. On the way home from the hospital, Bill called IU to put his name back on the home HD waiting list. One month later, Bill got the call he was waiting for. There was a spot in the home HD training program.

Feeling like a new man

It took about 2 weeks for Bill and his wife, Nancy, to complete their NxStage home dialysis training at IU. It took just one week for Bill to notice a difference in the way he felt.

"Learning the system was pretty straightforward," Bill said. "I was comfortable in the first week, but we stayed a second week to make sure that we wouldn't run into any surprises—and to plan for the supply shipments."

"By the end of the first week I felt like a different person," Bill notes. "Even though I was getting the same number of hours of treatment (about 12 per week), I was not drained afterward. Instead I felt pretty good!"

Bill found that short daily home HD had two big benefits:

1. Physical - "I felt better than I had felt for a long time."
2. Psychological - "I was not tied down to a clinic and a rigid schedule."

For the first time in years, Bill and Nancy began to think about travel again.

On the road

Not long after starting daily home HD, Bill and Nancy planned a 3-day trip as a "trial run" to make sure that they could handle travel with the NxStage. "I was completely comfortable," said Bill, "with the machine and with the NxStage support team."

Next step? A long time dream vacation to Mt. Rushmore and Yellowstone National Park. "We put more than 5,000 miles on our camper," said Bill proudly, "and we were very comfortable." To make travel easier, Bill and Nancy took out the back seat of their pick-up truck. They packed the space with NxStage fluid boxes. They also used 1-quart freezer bags to pack up what Bill would need for a single treatment: syringes, alcohol wipes, betadine pads, gauze pads, etc. "It made it easy to pack," claimed Bill. He used a plastic, 3-drawer cabinet to keep the supply kits handy. And, he lined a plywood box with foam so the machine was safe and snug on the road.

Bill has been very happy with the technical support he's gotten from the NxStage team. "When you call for help, you get someone who knows what they're talking about," says Bill. "Without that I wouldn't feel at ease traveling away from home and a trusted source of back-up equipment and staff."

Regular routine

With the NxStage machine, Bill does treatments 6 days a week for 2 hours each time. He and Nancy share the tasks. "Nancy does the heparin and flushing of lines, and hooks up the bloodlines to the machine," Bill reports. "I do my own cannulation and machine set-up. When the treatment is over, Nancy handles the tear down and throws out the trash, while I hold my needle sites until the bleeding stops."

Bill and Nancy do most of the treatments in the evening. "It makes the dialysis less of a burden on my time," says Bill. "This way, it doesn't take away from my day nearly as much as going into a center for treatments."

Bill goes into the IU clinic once a month for blood work. "I am serious about my diet and my numbers are good," he claimed. "So when Nancy and I were traveling and I needed to miss a blood draw, my doctor gave me the OK."

What we want

Bill and Nancy have been very happy with the freedom they've gained with home HD. "The NxStage machine is really a breakthrough," Bill said. "I am glad that I can take advantage of it. The onset of a health problem is a wake-up call that life is short," he admitted. "Thanks to NxStage, Nancy and I can do what we want to do. You can do it, too. Give it a try!"