Patient Stories: Ralph Colongione
In 2001, 71-year-old Ralph was hospitalized with congestive heart failure. Following a 6-day stint on life support, he was diagnosed with sleep apnea and with kidney disease resulting from high blood pressure and 30+ years of type 2 diabetes. Two years later, Ralph was readmitted to the hospital with heart problems, and this time had a fistula placed and had his first dialysis treatment.
Need for a Change
Once discharged from the hospital, Ralph began in-center hemodialysis, driving himself to the dialysis center three times a week. "He was wiped out!" reports Pat, Ralph's wife of 42 years. Additionally, Ralph often suffered from symptoms of restless legs syndrome (RLS), itching, and cramping. "We mentioned the RLS to the doctor who suggested medication," recalls Pat. "Ralph tried it but it didn't work, so he lived with the symptoms."
With all of the problems Ralph was having, Pat began to question his treatment choice. "The staff at the center had talked about nocturnal home hemodialysis (NHHD), so I began to learn all I could about it. I went to on-line message boards, too." One year after starting in-center hemodialysis, Ralph began doing NHHD.
The Routine
Six days a week, Ralph begins his treatment at 9:15 pm and finishes at 5:15 am. "I do all the setup work and Ralph does all the clean-up," reports Pat. "I also cannulate him because he has a frozen shoulder." Ralph and Pat call the observers every night with his weight, blood pressure, and temperature readings. The center then monitors Ralph on the Internet while he sleeps.
"We have about six minor glitches with the machine, per year," reports Ralph. "However, my wife is exceptionally good at straightening out the machine while working with the staff on the phone." Pat does feel very comfortable with the machine, adding, "Usually, I try to fix a minor problem and don't call, but if the problem is too big the repair crew comes to fix it and then we do an extra day for the day we missed."
A Lifestyle Change
Ralph and Pat have always been avid travelers and hoped to continue that passion even with Ralph on dialysis. In fact, not long after starting NHHD they traveled to Florida and did in-center hemodialysis while away from home. "We were on a bus at Disney and I thought Ralph was in fluid overload because he didn't look good," remembers Pat. "Turns out he had a heart attack and ended up with a quadruple bypass—plus, hurricane Charlie made landfall while he was in surgery!"
Despite their travel adventure, Ralph and Pat "really like to pack it up and go," but unfortunately couldn't with their current NHHD machine. "I followed Bill Peckham's story on the Internet, did a lot of research, and started bugging the center about portable loaner machines," says Pat. Fortunately, Ralph recently switched to a NxStage machine with a PureFlow™ SL water system that will allow them to travel more easily. "We no longer have to do RO and we do a lot less clean-up," reports Pat. "You just have to make sure and follow the step sequence properly." Pat and Ralph are real fans of the NxStage machine. "This machine has proven to be a gem. Doing nocturnal on the NxStage is less work, and much less space is needed for the machine," she adds.
Pat has found the Internet to be crucial in her quest for knowledge and information. In fact, she regularly visits Home Dialysis Central, stating that it's an "incredible website and I read it all the time!" Message boards have also been helpful for Ralph and Pat. "We are able to see what others have experienced on their journey," says Pat. "It really helps to know you are not alone."
Pat shares information she reads on-line with health care staff members. "I wind up teaching," she says. "Recently, I had a doctor ask me to show him how to do the buttonhole technique." Pat also speaks about home dialysis to nursing classes at her local community college. "Many of the teachers don't know about the newest things happening in home dialysis," reports Pat. "It's nice to get the awareness of home dialysis options to incoming nurses."
A Wonderful Life
The switch to home dialysis has been a great one for Ralph. "Since I've started nocturnal dialysis, my lab results are better, I feel better, and my sleep problems have subsided," he reports. "Compared to in-center hemodialysis, it's like night and day," adds Pat. "It's a lot of work, but it's well worth it."
Ralph and Pat credit their 3-step approach for success on home dialysis:
- Get a good nephrologist right when you are told you have kidney disease
- Know that dialysis is not the end of the road
- Be an advocate for yourself and manage your disease as much as you can
Keeping a positive and open attitude has also helped. "When you learn you have kidney failure, you have to keep upbeat and learn all you can about the treatment options, symptoms, and so on," advises Pat. "Dialysis is not the end of the road—there is an amazing and wonderful life with dialysis!"