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Empowerment: Now more than ever, dialysis can be part of the destination
10/16/2009
By George Harper
On the Road... Again
Editor's note: Should dialysis change the way you live your life? Author George Harper didn't let it 15 years ago, when he started traveling the country with his dialysis machine tucked into his RV. Today, home hemodialysis patient Harvey Wells has taken the same approach. Harper, one of NN&I's Editorial Advisory Board members who travels now tethered only to his immunosuppressants thanks to a kidney transplant seven years ago, interviewed Wells about his new adventures.
Harvey Wells is a positive person. He has a can-do attitude and has taken control of his kidney disease and made a good life for himself and his family despite dialysis. He has a background in management, and most recently computer programming, and hails from Euless, Texas.
Like many individuals, Harvey found out about his early stages of kidney disease by accident. When he tried to join the Navy at age 18 in the early 1970s he was classified 4F due to proteinuria. In his mid 40s, he was diagnosed with focal segmental glomerulosclerosis (FSGS) by biopsy. He began to feel bad and was experiencing blood pressure readings in the 240/140 range, along with edema in his ankles. In 1998, at age 46 he started dialysis, choosing peritoneal dialysis (PD) on the advice of his nephrologist. His family had just moved to Ohio.
Harvey and his wife Peggy saw PD as a bridge to transplant, and Peggy had decided to be Harvey's donor. They thought it would be a cure, and "nobody told us there was a shelf life on the kidney," Harvey said. During the transplant evaluation at Ohio State University Hospital, they learned that, rather than a cure, transplantation is only one option. But they decided it was the right option for now.
The transplant lasted eight years. Looking back, Harvey realizes that as long as things were going well with his transplant, he had denial about what could go wrong, so they were both quite devastated when the kidney failed. They soon moved back to Texas. Harvey went back to his previous nephrologist who advised against PD, citing Harvey was too large for that therapy (he weighs about 250 pounds). The nephrologist advised in-center dialysis, so that was what Harvey did. He just wanted to feel better as fast as he could and didn't know that hemodialysis at home was an option. He initially got a Permcath for access. Harvey easily fell into the routine of in-center dialysis as the center was only five miles away, and he really had no interest in self-care at the time. He eventually got an arteriovenous fistula.
Harvey's wife works for American Airlines and the couple has long had a love of travel. So, when Harvey began to feel better, they started transient dialysis travel. One of the first places they went was to Naples, Fla., where their daughter lives. In Naples, Harvey began to hear about home hemodialysis and the NxStage machine. When he returned home, he called NxStage to ask in what centers the machine was available.
When he learned that it was available at a sister center of his own Ameritech center, he said he felt like a kid waiting for Christmas as he waited for his doctor to make his rounds so he could ask him about the machine.
Harvey was surprised when the nurses talked to him about sticking himself. Initially he didn't want to do it. But that soon changed.
"It was a great moment of liberation," he said. That was a turning point for Harvey. He liked the feeling of independence. Now he feels really good about how he oversees his treatment. "I want to know that everything is done right in this treatment. I don't want anyone touching this machine when I start the setup process. I don't trust anyone to do it but me. I don't even want people opening my dialysate bags because I want to make sure they are not contaminated."
Once settled into a routine with the NxStage machine, Harvey turned his attention to travel again. He bought a conversion van to hold the machine and supplies and stayed in hotels at night. His first trip was a "boys trip." He took his two grandsons and the son of a friend on the three-week trip. They started in Cleveland and traveled to Memphis, Tenn., and stayed in the Peabody hotel where the boys enjoyed the famous duck march and toured Elvis Presley's Graceland. Then it was on to Chattanooga, Tenn. where they visited a railroad museum, saw the Civil War sites, and went to Ruby Falls. Asked about dialyzing alone without a partner, Harvey said, "The boys know to call 911 if granddaddy conks out." The guys finished up with a visit to The Rock and Roll Hall of Fame and Museum in Cleveland.
Currently Harvey and his wife Peggy travel the country representing NxStage (his back-up clinic is independent). "I wanted to make this treatment better known to other patients," he says. They usually arrive in the RV at a dialysis facility parking lot and dialyze there between 10 a.m. and 2 p.m. in order to catch two shifts of patients. Patients are invited into the RV to see Harvey dialyzing on the NxStage machine. He will soon be heading out on the "Dixie Tour," which will take them to many clinics in the south. Harvey says "Next summer I'd like to spend two months with the boys out on the road in the motor home."
Harvey dialyzes three hours, six days a week and feels good, he says. He experiences no more disequilibrium syndrome like he did in-center. His biggest fears are his access not working and not having the NxStage machine.
One idea he would offer to NxStage: make the machine lighter than its current 70 pounds. The only problems he has faced on the road as far as dialyzing is that in very hot weather the dialysate gets too warm, triggering an alarm.
When it comes time to load his 32-foot motor home, Harvey gets plenty of help from his children and grand kids. They won't let him touch anything. They do all the loading for him. Harvey usually packs two weeks' worth of dialysis supplies. He takes 30 boxes of dialysate (two five-liter bags per box), and two boxes of saline (14 one-liter bags per box). Harvey has additional dialysis supplies shipped to strategic points along the way as needed.
Following your own road
Dialysis can have a major impact on your life, and drag you down-if you let it. In Harvey Wells, I see a fellow patient who was sent reeling and stumbling because of kidney failure. He steadied himself, and with confidence and optimism not only recovered, but has gone on to build an exciting life of independent travel, as well as promoting home dialysis therapy. It just shows what heights of independence a determined patient can reach. The memories he is creating with his grandsons are priceless.
Harvey is a road warrior who has enriched his life by meeting the challenges of dialyzing in an RV.
You can follow Harvey Wells in his travels across the country with his Nxstage machine at http://twitter.com/NxStageHarvey.
On the Road... Again
Editor's note: Should dialysis change the way you live your life? Author George Harper didn't let it 15 years ago, when he started traveling the country with his dialysis machine tucked into his RV. Today, home hemodialysis patient Harvey Wells has taken the same approach. Harper, one of NN&I's Editorial Advisory Board members who travels now tethered only to his immunosuppressants thanks to a kidney transplant seven years ago, interviewed Wells about his new adventures.
Harvey Wells is a positive person. He has a can-do attitude and has taken control of his kidney disease and made a good life for himself and his family despite dialysis. He has a background in management, and most recently computer programming, and hails from Euless, Texas.
Like many individuals, Harvey found out about his early stages of kidney disease by accident. When he tried to join the Navy at age 18 in the early 1970s he was classified 4F due to proteinuria. In his mid 40s, he was diagnosed with focal segmental glomerulosclerosis (FSGS) by biopsy. He began to feel bad and was experiencing blood pressure readings in the 240/140 range, along with edema in his ankles. In 1998, at age 46 he started dialysis, choosing peritoneal dialysis (PD) on the advice of his nephrologist. His family had just moved to Ohio.
Harvey and his wife Peggy saw PD as a bridge to transplant, and Peggy had decided to be Harvey's donor. They thought it would be a cure, and "nobody told us there was a shelf life on the kidney," Harvey said. During the transplant evaluation at Ohio State University Hospital, they learned that, rather than a cure, transplantation is only one option. But they decided it was the right option for now.
The transplant lasted eight years. Looking back, Harvey realizes that as long as things were going well with his transplant, he had denial about what could go wrong, so they were both quite devastated when the kidney failed. They soon moved back to Texas. Harvey went back to his previous nephrologist who advised against PD, citing Harvey was too large for that therapy (he weighs about 250 pounds). The nephrologist advised in-center dialysis, so that was what Harvey did. He just wanted to feel better as fast as he could and didn't know that hemodialysis at home was an option. He initially got a Permcath for access. Harvey easily fell into the routine of in-center dialysis as the center was only five miles away, and he really had no interest in self-care at the time. He eventually got an arteriovenous fistula.
Harvey's wife works for American Airlines and the couple has long had a love of travel. So, when Harvey began to feel better, they started transient dialysis travel. One of the first places they went was to Naples, Fla., where their daughter lives. In Naples, Harvey began to hear about home hemodialysis and the NxStage machine. When he returned home, he called NxStage to ask in what centers the machine was available.
When he learned that it was available at a sister center of his own Ameritech center, he said he felt like a kid waiting for Christmas as he waited for his doctor to make his rounds so he could ask him about the machine.
Harvey was surprised when the nurses talked to him about sticking himself. Initially he didn't want to do it. But that soon changed.
"It was a great moment of liberation," he said. That was a turning point for Harvey. He liked the feeling of independence. Now he feels really good about how he oversees his treatment. "I want to know that everything is done right in this treatment. I don't want anyone touching this machine when I start the setup process. I don't trust anyone to do it but me. I don't even want people opening my dialysate bags because I want to make sure they are not contaminated."
Once settled into a routine with the NxStage machine, Harvey turned his attention to travel again. He bought a conversion van to hold the machine and supplies and stayed in hotels at night. His first trip was a "boys trip." He took his two grandsons and the son of a friend on the three-week trip. They started in Cleveland and traveled to Memphis, Tenn., and stayed in the Peabody hotel where the boys enjoyed the famous duck march and toured Elvis Presley's Graceland. Then it was on to Chattanooga, Tenn. where they visited a railroad museum, saw the Civil War sites, and went to Ruby Falls. Asked about dialyzing alone without a partner, Harvey said, "The boys know to call 911 if granddaddy conks out." The guys finished up with a visit to The Rock and Roll Hall of Fame and Museum in Cleveland.
Currently Harvey and his wife Peggy travel the country representing NxStage (his back-up clinic is independent). "I wanted to make this treatment better known to other patients," he says. They usually arrive in the RV at a dialysis facility parking lot and dialyze there between 10 a.m. and 2 p.m. in order to catch two shifts of patients. Patients are invited into the RV to see Harvey dialyzing on the NxStage machine. He will soon be heading out on the "Dixie Tour," which will take them to many clinics in the south. Harvey says "Next summer I'd like to spend two months with the boys out on the road in the motor home."
Harvey dialyzes three hours, six days a week and feels good, he says. He experiences no more disequilibrium syndrome like he did in-center. His biggest fears are his access not working and not having the NxStage machine.
One idea he would offer to NxStage: make the machine lighter than its current 70 pounds. The only problems he has faced on the road as far as dialyzing is that in very hot weather the dialysate gets too warm, triggering an alarm.
When it comes time to load his 32-foot motor home, Harvey gets plenty of help from his children and grand kids. They won't let him touch anything. They do all the loading for him. Harvey usually packs two weeks' worth of dialysis supplies. He takes 30 boxes of dialysate (two five-liter bags per box), and two boxes of saline (14 one-liter bags per box). Harvey has additional dialysis supplies shipped to strategic points along the way as needed.
Following your own road
Dialysis can have a major impact on your life, and drag you down-if you let it. In Harvey Wells, I see a fellow patient who was sent reeling and stumbling because of kidney failure. He steadied himself, and with confidence and optimism not only recovered, but has gone on to build an exciting life of independent travel, as well as promoting home dialysis therapy. It just shows what heights of independence a determined patient can reach. The memories he is creating with his grandsons are priceless.
Harvey is a road warrior who has enriched his life by meeting the challenges of dialyzing in an RV.
You can follow Harvey Wells in his travels across the country with his Nxstage machine at http://twitter.com/NxStageHarvey.
"In my day..." Things have changed a lot since I traveled in an RV with dialysis. The greatest difference is not in comparing our dialysis equipment, but the support Harvey gets from dialysis providers. My provider's legal department said it was too dangerous. I solved that problem by becoming my own supplier and obtaining a Medicare provider number. Today, updates in dialysis machine design and technology have made it easier to travel.  There are some notable differences in traveling with a dialysis machine and an RV today versus 15 years ago (Table 1).
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