Why I chose home dialysis: Jake's Story

Jake

Jake is a 64-year-old man from California who grew up witnessing the devastating effects of chronic kidney disease. His grandfather had polycystic kidney disease (PKD) and died at the age of 41. PKD reached Jake’s dad who was diagnosed in his early 50s. Jake’s sister also inherited the disease and battled it for years until she died at age 47. Sadly, Jake was diagnosed with the disease in his 60s.

Jake’s kidneys failed in May 2003, and he started on peritoneal dialysis (PD) that same month. He continued the treatments for 5 months until he contracted peritonitis and a fungal infection and had to be hospitalized for 10 days. His catheter was removed, and he had a fistula created in his right arm and a perm-cath.

Jake then started hemodialysis at a clinic and continued to do so for 5 months. During the first month, Jake’s restless leg syndrome increased, and he had increased itching. By the second month, Jake started to feel tired and was unable to walk up two flights of stairs without having to stop for air. He had trouble staying awake during the day and his energy level was decreasing. “I was going down hill,” he said. “The days I came back home from treatment, I would have to take 2-hour naps.” He had severe cramping at night and awakened every hour with restless legs. He also experienced extreme drops in his blood pressure and severe cramping almost every time he dialyzed. He had to nap several times a day, and became very irritable.

Jake quickly became unhappy with his altered lifestyle. He was retired, but missed traveling around the country with his wife in their RV to attend dog shows, something they liked to do almost every weekend to show their Springer Spaniels. He also missed attending car shows featuring their 1956 Ford Thunderbird. On in-center hemodialysis, Jake couldn’t travel on weekends or holidays because the dialysis clinics were always full. He had to limit his trips to large cities where clinics could fit him in, and had to avoid certain days because the clinics were too crowded.

Jake started to become depressed about his condition and wanted to change the way his dialysis treatments limited his life. He consulted with Dr. Carol DiRaimondo, the family’s nephrologist, who told him about a new, portable hemodialysis system that allows patients to do treatment anywhere. He decided to try the NxStage System One, finished an 8-week training program, and in April 2004 was able to take his treatments home.

Within 3 weeks of starting on daily home hemodialysis, Jake felt a tremendous improvement in his overall health and well-being. By the second week, his night cramps had stopped and his restless leg syndrome was gone. In addition, Jake used to take nine different pills for blood pressure but within months of his new treatment, was able to forego those medications. “I feel great now!” he exclaimed. “I have no up-and-down days and I feel very similar to when I had no kidney failure.”

Jake is now able to travel and enjoy the activities he used to do before his kidneys failed. Just this past summer, Jake and his wife were able to spend 5 weeks in Washington state camping in their motor home. He’s proud to say that his life isn’t scheduled around his dialysis treatments anymore; the dialysis is schedule around his life. “I take the machine wherever I go. I’m not limited to a certain time and a certain place. I have complete freedom now.”

Jake does the dialysis treatment around an 8-day schedule—three days on and one day off—anywhere he is. His wife is always there to help, but he does the entire treatment himself. Jake is comfortable with the treatment, and feels it is a very easy process—and most importantly, pain-free. “I enjoy the treatments now because I have control of my dialysis and the procedure is so subtle on my body,” Jake commented. “My appetite has returned and everyone tells me that my color has really come back to normal.”

“The thought of performing dialysis treatments outside of the clinic might be scary, but once people see how easy it is they become much more comfortable,” he said. “The system is perfectly safe and anyone can do it!”

Jake is very optimistic about his future and is happy to be alive and feeling so well. He saw his grandfather die of this disease and is thankful he found a treatment that is so easy and flexible. “I’m not depressed or discouraged to be on hemodialysis,” Jake said. “As long as I have to undergo treatment, I’m happy with this system. I’ll be eternally grateful for having been selected to participate in this wonderful program. It has changed my quality of life so dramatically, beyond what I ever imagined. I’m back to the life I had before my kidneys failed.”

This patient has granted NxStage Medical, Inc., permission to use his personal story for purposes of educating others about the NxStage System One.