It was June 2003, and 64-year-old Bill was on his annual Minnesota fishing trip. As he stepped out of the shower one morning, he noticed a sudden, “terrific” swelling in his feet and legs. Alarmed, Bill cut his trip short and drove to the closest large hospital in Duluth, MN. Doctors there diagnosed “poor kidney function” and recommended that he make an appointment with a nephrologist—soon.

Bill took that recommendation seriously and went to see a kidney specialist as soon as he returned home to Indianapolis. “I had no experience with any type of kidney problems,” Bill explained, “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 immediately changed his diet to try to preserve kidney function he had left. “I wanted to delay dialysis,” he said, but I may have waited too a little too long.” By November 2005, Bill was “feeling pretty bad” so he chose to start dialysis treatments—3 days a week, at a dialysis center nearby.

A real challenge

“We were very fortunate because we had a great group at the dialysis center,” Bill recalled. “The staff was good and I enjoyed being with them, but I didn’t like being tethered to the dialysis center and losing 3 days out of my life each week.”

Even though his dialysis treatments were less than 4 hours each, 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,” Bill recalled.

All in all, “we functioned and we coped,” admitted Bill, “but it was a real challenge.”

Finding a way to go home

The idea of doing his own dialysis at home had appealed to Bill from the beginning, but his rural Indiana home was not suitable for a traditional dialysis machine. “Our well at home has a limited capacity,” Bill explained, “and could not support the RO (reverse osmosis) water treatment system required by a traditional dialysis machine.”

Bill’s nephrologist, Dr. Bloch, suggested that he might be able to do home hemodialysis if he transferred to the dialysis unit at Indiana University (IU). As a patient there, Bill could try the NxStage System One dialysis machine, which does not need water purification equipment. “It was a very ethical thing to do,” praised Bill, “because 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 donate a kidney and was a good match. “We had the surgery scheduled and I took my name off the home dialysis waiting list,” Bill said. Then, at the final pre-op check, doctors discovered 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 reactivated his name on the IU home dialysis waiting list.

One month later, in mid-July of 2006, Bill got the call he was waiting for. There was a spot available in the home dialysis training program.

Feeling like a new man

It took about two weeks for Bill and his wife, Nancy, to complete their NxStage home dialysis training at Indiana University. 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 completely comfortable within the first week, but we stayed the second week just to make sure that we wouldn’t run into any surprises—and to make arrangements for the supply shipments.”

“By the end of the first week I was feeling like a different person,” Bill recalled, “even though I was getting the same number of hours of dialysis (about 12 per week). “I was not drained after dialysis; instead I actually felt pretty good.”

According to Bill, short daily home hemodialysis 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 physical location 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 home dialysis, Bill and Nancy planned a 3-day trip as a “trial run” to make sure that they could handle traveling with the NxStage. “I was completely comfortable,” said Bill, “with the machine and with the NxStage support team.”

Next step? A longtime dream vacation to Mt. Rushmore and Yellowstone National Park in fall 2006. “We put more than 5,000 miles on our camper,” said Bill proudly, “and we were very comfortable. To make traveling easier, Bill and Nancy took the back seat out of their pick-up truck; they packed the space with dialysate boxes. They also used 1-quart freezer bags to package everything 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 dialysis machine nested safe and snug on the road.

Bill has been very happy with the level of technical support he’s received from the NxStage team. “They’ve got knowledgeable people,” said Bill, “and when you call for help you get someone who knows what they’re talking about. Without that I wouldn’t feel comfortable traveling away from home and a reliable source of back-up equipment and staff.”

Regular routine

With the NxStage machine, Bill dialyzes six days a week for two hours each time. He and Nancy share the tasks needed to do a dialysis treatment. “Nancy does the heparin and flushing of lines and hooks up the bloodlines to the machine,” Bill reported. “I do my own cannulation and equipment set-up. When the treatment is over, Nancy handles the tear down and trash disposal while I hold my needle site until the bleeding stops.”

Bill and Nancy typically do the dialysis treatments in the evening. “It makes the dialysis less of an imposition on my time,” noted 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 dialysis unit at IU 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 hemodialysis. “The NxStage machine is really a breakthrough,” Bill said, “and I am glad that I can take advantage of it. The onset of a serious physical problem is a wake-up call that life is finite,” he admitted. “Thanks to the NxStage, Nancy and I can do what we want to do.”