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...everything you need to know about doing dialysis at home.
“I guess you can teach an old dog new tricks,” laughs John, “because I started training to do my own dialysis at the age of 81!” Two years later, John is still going strong. At 83, he is probably the oldest person in the U.S. doing home hemodialysis.
In late 2002, John’s doctor told him his kidneys were failing, and he began to make plans. He and his wife, Sarah, of Lynchburg, Virginia, talked to their nephrologist, Dr. Robert Lockridge, about training to do dialysis at home. Their plans were put on hold, however, when John had a heart attack in January 2003.
“I went into the hospital for the heart attack,” said John, “and I started dialysis there—much earlier than planned.” The combination of heart problems, fluid overload, and low-level kidney function had sent John into kidney failure. “Before my kidneys failed, they tried to put a stent into one of my kidneys to help keep it working,” recounts John, “but it didn’t work.”
Because there had been no time for home training, John continued his dialysis treatments at Lynchburg Dialysis Center when he was released from the hospital. He dialyzed 3 days a week for 4 hours at a time, but he didn’t much like it. “The schedule messed up everything,” he remembers. His wife Sarah agrees. “The only time the center had available was 5 pm, so our dinner time was interrupted and we didn’t get home on dialysis days until 10:30 or 11:00 pm,” she recalls. In addition, John didn’t feel very well. “He was cold all the time, and very tired,” notes Sarah, “and he was itching like mad.”
As soon as they could, John began to train for home dialysis, encouraged by Dr. Lockridge. The knowledge that there were other people doing home dialysis convinced them to give it a chance. Notes Sarah, “If other people could do it, we could do it, too.”
“We went to training classes 5 days a week for 6 weeks,” remembers Sarah. As dialysis partners, they both needed to learn all about dialysis, the machine, the alarms, the blood tests, catheter care, and more. “At the center, they have a huge workbook for training,” says Sarah. “There’s so much information to learn.”
In spite of their ages (John was 81, and Sarah was 74), they decided to take on the challenge of home dialysis and all the training because they believed that it would make their lives better. “You get more dialysis,” says John, “so it is more like having a kidney.” All that dialysis makes it possible for John to eat almost anything he wants. And, he likes having less restrictions. Finally, there’s the fact that he feels a whole lot better. “I feel like I’m 75!” John jokes.
Even though the training was thorough, John and Sarah were a little nervous about going solo. “During training there was always a nurse close by,” comments John. “If you had a problem, you’d ring a bell and they’d be there in a second.”
Now, if they need help, they call one of the home dialysis nurses. “You can call anytime, day or night,” notes John, “and they will call you back in 2 or 3 minutes.” Nerves were not the only problem that John had when they first went home—they also had equipment troubles. “We had a bad computer on our first machine,” explains Sarah. “We had a lot of alarms until they replaced it. Since then we’ve hardly ever had an alarm.”
They have had some scary moments, though. Like the night John complained that his “head was hot.” Sarah got up to check and found that the dialyzer was leaking and John’s blood pressure had dropped to a dangerously low level. “I gave him some saline and called the nurse,” recalls Sarah. “When they called, they told me I had done the right thing and I should watch John carefully. If his pressure dropped any more, we were supposed to go to the hospital, but it didn’t and we were fine.” That episode convinced Sarah and John to put a moisture-sensing pad (usually used as a bed-wetting monitor) under the dialysis machine. If the dialyzer leaks even a drop, the alarm goes off and prevents serious blood loss.
After 2 years at home, they have settled into a comfortable routine. John sets up the machine (a Fresenius 2008K), primes it and runs the tests. He also takes his blood pressure and weight. Sarah prepares the syringes that are used to flush John’s catheter. “We start getting ready a little after 10 pm,” says John, “and I’m on by 11 o’clock.”
The machine runs for 8 hours during the night while John and Sarah are sleeping. “In the morning, you disconnect and flush the catheter,” says John. There are also a few steps needed to cleanse the machine after a run. “It’s pretty easy for us now,” claims Sarah, “and we’ve even tried to show our grandchildren how to do some of the steps.”
John and Sarah do a dialysis treatment 5 days a week. They take Wednesdays and Saturdays off. “It gives you a little break,” notes Sarah. “And we can use those days to travel to visit our relatives who don’t live too far away.”
John and Sarah have made adjustments to accommodate home dialysis. For one thing, they’ve added a room on the first floor. “We have a 2-story house and our bedroom was upstairs,” explains John. “Sarah designed a ‘dialysis room’ on the first floor so we can keep the equipment and supplies downstairs and still have a closet big enough for our clothes.” They also put a bathroom and a laundry tub in the room for convenience.
They put the dialysis machine on a 4 x 8 piece of plywood covered with linoleum. “We occasionally have a little leak,” John comments, “but it’s easier to see and clean up on this type of flooring.” Although their water comes from a well, they had no problems with their water supply. Their electrical system was fine for the machine, too.
Once a month, they take a blood sample and water sample into their dialysis center for testing. Then, John goes back to the center later in the week to meet with Dr. Lockridge and his staff to go over the test results and discuss any concerns or needed changes.
“I had my doubts about all this at first,” remembers Sarah. “Three weeks into it, when we were having all those equipment alarms, I asked myself ‘Should we have done this?’” But now she and John are happy they stayed with it. Adds John, “This [home dialysis] is the way to go.”
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