Dialysis, Fighting for a lifeCarol Mulligan
Sudbury Star
Saturday, April 07, 2007
Local News - Jessie St. Amour understands it when his father says there were times he wished his son would break his arm playing football for the St. Charles Cardinals.
A broken bone might have forced the 18-year-old wide receiver off the field. Nothing else had.
A 30 per cent bilateral hearing loss years ago didn't, nor did the near-complete failure of his kidneys a year ago, or growing weaker as he prepared to go on lifesaving hemodialysis in December.
Not even the three-times-a-week blood filtering treatment scared the young athlete off the ice when he played hockey for the Cards this season.
"That's pretty bad," Richard says of his halfhearted hope his son would break something. But the way he saw it, it was the lesser of two evils.
"He wasn't supposed to play hockey," Richard says of his son's 2006-2007 season with his high-school team. "He has high blood pressure. He could have had a heart attack."
That Jessie didn't is a testament to his strength and youth. But if he doesn't get the kidney transplant he needs, his days as a varsity athlete are numbered.
Since December, Jessie and his father have been spending three nights a week in the renal unit at Sudbury Regional Hospital's Laurentian site.
"I'm grateful for dialysis - definitely," says the six-foot 12th grader to a reporter seated across from him as he watches the dials on the machine through which his blood is filtering.
What frustrates him is that a more effective, less expensive form of hemodialysis pioneered in Ontario is available in many places in the province, but not at Sudbury Regional Hospital or even in Northern Ontario.
It's called nocturnal home hemodialysis, and it could add years to Jessie's young life. It could also add immeasurably to the quality of his life.
The dialysis modality was the brain child of Toronto nephrologist Dr. Robert Uldall, who began a pilot project in it in 1994, a year before he died.
Since then, Humber River Regional Hospital nephrologist Dr. Andreas Pierratos has continued the work of Uldall, offering the treatment in what is still essentially a pilot program.
Dialysis is a treatment for people in the later stage of chronic kidney disease. It cleans the blood, and removes waste and excess water from the body - work normally done by healthy kidneys.
There are two types of dialysis. One is hemodialysis or "cleaning the blood," according to the Kidney Foundation of Canada. Blood is circulated through a machine which contains a dialyzer or artificial kidney that has two spaces separated by a thin membrane.
Blood passes on one side of the membrane and dialysis fluid passes on the other. Waste and excess water pass from the blood through the membrane into the dialysis fluid, which is then discarded. The cleaned blood is returned to the bloodstream.
This conventional method generally takes four hours and is done three times a week. (The other form is called peritoneal dialysis, and while hospital officials insist it's as good as hemodialysis, many people do not agree.)
What's different about nocturnal home hemodialysis, says Pierratos, is that it is done over an eight-hour period at home while the patient is sleeping, ideally six nights a week.
The obvious advantage is that a renal or kidney patient needn't travel to hospital for a four-hour treatment which, when travel is factored in, amounts to six hours three days a week.
Because the treatment is long and frequent, it is "very smooth," says Pierratos.
Changes are gradual so the body tolerates it better than shorter dialysis. And because the amount of dialysis is three to four times greater than the conventional form, it more closely resembles what the kidney does normally.
A patient's quality of life on nocturnal home hemodialysis improves dramatically, said Pierratos last week in a telephone interview from Toronto.
It can take a patient almost seven hours to recover from the conventional dialysis that Jessie St. Amour is now receiving at Sudbury Regional Hospital. The teen can attest to that.
Because he goes to school during the day, Jessie receives dialysis starting at 6:30 p.m. three nights a week. After a night's sleep, he awakes exhausted and says he's "mostly tired all the time."
After conventional dialysis, patients feel weak, grumpy and nauseous, and may need to sleep to recover.
After nocturnal dialysis, they have more energy, their sexual function improves and people who had to quit their jobs can often return to work.
If that weren't enough, nocturnal dialysis has significant beneficial effects on the cardiovascular system. Chronic kidney disease can cause high blood pressure - and vice-versa - but a patient's blood pressure often normalizes without medication on nocturnal dialysis.
For Jessie, that would mean he could stop taking four types of pills to lower his blood pressure.
The hearts of dialysis patients are larger than normal, and an enlarged heart increases the chances of dying of cardiac disease.
Long, slow nocturnal dialysis can improve the target function and even the size of the heart, "and that's been documented," says Pierratos.
Nocturnal dialysis also controls the level of toxic phosphorus in patients with chronic kidney disease, which can result in blood vessels calcifying and "a lot of morbidity."
Patients' anemia also improves on the modality and they require less of a costly drug called erythropoietin or (EPO), a hormone that prevents low blood count.
Nocturnal dialysis reduces the use of EPO by 30 per cent, saving $2,000 or $3,000 per patient to the health-care system, says Pierratos.
Jessie St. Amour knows all about nocturnal home hemodialysis and so does his father, Richard.
Richard St. Amour has been relentless in his pursuit to access nocturnal home hemodialysis for his son.
When his son's kidney failure was progressing, Richard promised Jessie he would "look into everything."
It wasn't the St. Amour family's first experience with kidney disease. Jessie's mother, Anne, suffered kidney failure more than 15 years ago and underwent hemodialysis for three years before having a successful kidney transplant.
The family didn't know it for years, but Anne had Alport Syndrome and passed on the disorder of the membranes of the kidney, eye and ear to her youngest son. Her elder son Steven, 21, did not inherit the gene.
People who inherit the gene may develop progressive loss of renal function, deafness and abnormalities of the eye.
Richard St. Amour recalls that blood was detected in Jessie's urine when the boy was just three years old, but the family doctor said it wasn't serious and that he would grow out of it
When Jessie suffered hearing loss at age 12, Richard began doing research and concluded his son might have Alport's. He insisted his son be sent to Sick Children's Hospital in Toronto, where he was diagnosed with the syndrome.
As he fidgets and adjusts the tubing moving his blood through the dialysis machine, Jessie isn't bitter the disease wasn't discovered when he was younger.
"It kinds of bothers me a little bit," he says, shedding his Cards hat and rubbing his cropped red hair.
"If you actually think about it, they could have prevented this," he says without guile, pointing to his dialysis machine.
When their son's kidneys were only functioning at eight per cent, Richard and Anne St. Amour began months of preparing him for what to expect from dialysis.
"We told him this was not going to be the end of the world," says Richard.
In the meantime, Richard researched the best method of hemodialysis for his son and concluded it was the nocturnal home modality.
The elder St. Amour is clearly angry the treatment is not available to his son in Sudbury, but Jessie accepts it more calmly than his father.
When asked what it would mean to him at his age, Jessie says softly: "It would mean a lot."
It would be gentler on his system and would place less stress on his heart. It would end the need for blood pressure medication, "and I could eat whatever I want and gain weight."
Jessie's weight has dropped about 12 pounds to 158 since he went on dialysis more than three months ago.
"I would feel great during the day," he says.
It would give him more control of a condition he will suffer from until - and if - he is lucky enough to get a kidney transplant.
Jessie and his father have struck up an online friendship with Prof. John Agar, director of the renal unit and divisional director of medicine at The Geelong Hospital, Barwon Health, in Geelong, Victoria, Australia.
Since they visited his website and began e-mailing him, Agar has taken an interest in Jessie's case. He recently wrote a letter to the editor of The Sudbury Star, saying how Jessie impressed him, calling the teen "a rather extraordinary young man."
He commended Jessie for pursuing his dream to finish high school and enter college this fall while undergoing rigorous hemodialysis in hospital.
He described Jessie's continuing participation in the Cardinals' hockey team as "an amazing feat of courage and determination."
Jessie's photograph appeared in The Star in February, and Agar said readers might have been unaware "this lad was performing superhuman feats on the ice while his dialysis chair was still warm from his last treatment and his arm (was) bandaged" to prevent bleeding from a passage formed to permit entry of needles for dialysis.
Agar later told The Star in an e-mail that nocturnal dialysis has "swept Australia and is the fastest growing modality here."
Agar gives full credit for it to Pierratos and his colleagues in Ontario. Agar travelled to Humber River Regional to learn about the treatment and took it back to his country.
"We sought government support at the outset and now have it 'in spades' as not only is (it) better in outcome, but it is cheaper for the provider ... a real win-win situation for both patient and funding body."
Despite the fact the treatment was pioneered here and has been under study in pilot programs for more than a decade, it is unavailable to people living in the North.
No one knows that better than Monique Ratelle and Norm Fex of Sudbury. Fex and Ratelle are both well acquainted with Jessie St. Amour, and are on the same dialysis rotation with him at Sudbury Regional Hospital.
Fex, 54, suffered kidney damage in 1977 from a bladder infection he said wasn't properly treated in hospital.
By 1984, his kidneys had failed and he was forced to retire from what was then Inco Ltd.'s Copper Cliff South Mine, where he worked as a sandfill boss.
He was told he had two years to live, and went on full pension. Two years later, he went on hemodialysis and underwent a kidney transplant in London, Ont., in 1988.
By 1994, he had moved to British Columbia, and "was climbing mountains" when his transplanted kidney failed and he decided to return to Sudbury. He resumed dialysis in 1995 and has been on it ever since.
Ratelle, 44, developed lupus when she was 13 and it damaged her kidneys. By age 21, she was on hemodialysis.
Incredibly, Ratelle has had two kidney transplants, both of which failed. Unlike Fex and Jessie St. Amour, she is no longer a candidate for transplant.
In March 1997, after her second kidney transplant, Ratelle developed cramping in one leg "and I knew I had a problem."
She contracted cytomegaly virus during her second transplant - unbeknownst to her - and it caused an infection that resulted in her leg having to be amputated.
About three years ago, Ratelle and Fex attended an open house at Humber River Regional Hospital about nocturnal home hemodialysis and came back full of hope.
Both had seen a program on CTV's W-Five about it and Ratelle had thought: "That would change my life."
Ratelle and Fex were excited about the prospects of gaining access to the program. Three years later, the fates have landed them in different places on that score.
Fex heard just this week that he has been accepted into the nocturnal home hemodialysis program at St. Michael's Hospital.
Ratelle had high hopes of being accepted into Humber River's pilot, but her optimism has faded as the months have dragged on and she has not been offered a spot.
Two and a half years ago, Ratelle received a letter from the Ministry of Health and Long-Term Care in response to her written plea to have nocturnal home hemodialysis available in Sudbury.
She was told then that the results of the pilot programs at Humber River Regional Hospital and London Health Sciences Centre were under review.
A spokesman for that same ministry told The Star this week those pilot programs continue to be under review. When informed that that was the ministry's response to Ratelle's entreaty more than two years ago, David Jensen said it was likely the review was closer to being completed now than in 2005.
Ratelle admits she had given up hope of getting on the list for Humber River Regional's program when she learned of Jessie and Richard St. Amour's efforts to access the same program.
Ratelle, who works part-time as a laboratory technician at Sudbury Regional Hospital, doesn't mince words. After two kidney transplants, a lost leg and almost 25 years of dialysis, "my quality of life sucks," she says bluntly.
Worse still, poor circulation is seriously limiting the amount of hemodialysis she can sit through at hospital. Her four-hour treatments have declined to two hours some evenings, and she fears her circulatory problems could result in her arm being amputated.
Between working and dialysis, Ratelle says she has been too exhausted to fight for the dialysis she is convinced will add years to her life.
For now, she's waiting to see what happens with both Norm Fex and Jessie St. Amour.
"I'm tired of being let down," she says, her voice full of frustration. "I think that's why I haven't (kept) asking Humber River. I'm tired of being let down."
Ratelle and Fex have pleaded their case for access to nocturnal home hemodialysis to everyone from Sudbury Regional Hospital president Vickie Kaminski to Sudbury MPP Rick Bartolucci and Ontario Health Minister George Smitherman.
All have replied, but they haven't answered Fex's and Ratelle's bottom-line question: Why is a procedure that could so improve their quality of life, costs less money than conventional hemodialysis and that was pioneered in Ontario, not available to the residents of a fair-sized northern city such as Sudbury?
Judy Chaperon is clinical manager of nephrology at Sudbury Regional Hospital. She says the subject of nocturnal home hemodialysis is often discussed by staff on the sixth-floor renal unit at the hospital.
She agrees that "clearances" of the blood are better with the nocturnal modality because patients are dialyzed every night.
Studies show nocturnal dialysis results in less hospitalization, reduced use of blood pressure medication and more freedom for patients in terms of what they can eat and drink.
But nocturnal dialysis is not for everyone, says Chaperon.
To go on the treatment, a patient must be capable of supervising their own dialysis. Some patients already do that with limited nursing support in the renal unit's self-care section. But others, particularly the elderly or those who live alone, may be unable or unwilling to do so.
Fex will take a break from his home building business and will leave for Toronto later this month for four to six weeks of training in nocturnal dialysis. He will have to pay his own travel expenses and accommodation, although the Kidney Foundation is helping him with a $1,000 grant.
He fumes at the inequities between the North and southern Ontario when it comes to the lifesaving program.
Chaperon says Sudbury Regional Hospital is "definitely interested" in offering nocturnal home hemodialysis. "It would mean starting a new nocturnal dialysis program, but we could certainly leverage on our knowledge of conventional dialysis."
Sudbury Regional's renal unit has 150 dialysis patients on site who access 31 conventional hemodialysis machines in three shifts daily, six days a week.
Six new machines purchased last year and six more that will be ordered for the new one-site hospital are adaptable to nocturnal dialysis.
The hospital's patient care team has discussed how it would like to "go ahead with (nocturnal dialysis) when the ministry gives us the green light."
At the very least, it would require weeks of training for staff and patients alike.
Pierratos says it all boils down to money, but says Health ministry officials are missing the point that daily nocturnal dialysis can save big.
His research shows the treatment results in a savings of about $10,000 per year per patient when factors such as reduced hospital time, lower medication costs and the hospital labour are factored in.
His hospital is offering nocturnal dialysis to about 60 patients in a pilot program that originated with colleague Uldall at Toronto's Wellesley Hospital.
Pierratos is gentle in his criticism of the Health ministry, only saying it is "a little bit too cautious" in reviewing the program and opening it up to others.
As well as costing money initially, a cultural change is needed to make a significant move toward home dialysis.
Patients, families, hospitals and physicians must be convinced to invest energy and money into training people to administer their own dialysis.
Humber River Regional offers a remote monitoring system in which home dialysis patients are checked via computer as far away as Vancouver, B.C.
Pierratos is well aware of young Jessie St. Amour's case. "The plan is to have him trained" in nocturnal home hemodialysis, he say.
Both Pierratos and Agar say the push for nocturnal home hemodialysis must come from patients to make any real impact upon government.
"I can tell you ... the Ministry of Health wonders to what extent there is an ulterior motive" when doctors lobby for the treatment, says Pierratos.
But if enough dialysis patients and hospital officials press the ministry for greater access, it may move the issue up higher on the government agenda, particularly with a provincial election around the corner.
Pierratos credits "heroes" like the officials at small hospitals such as Oshawa General for advancing the cause. They have found the money to offer nocturnal dialysis, despite government's slowness in funding it.
"You just need one local hero to take it and push it," says Pierratos of what it would take to start a nocturnal home hemodialysis program in Sudbury.
Australia's John Agar was that type of person, and so was Dr. Robert Lockridge of West Virginia. Both came to Ontario to learn about the modality, then returned home and ran with it "against financial odds."
They "took a personal interest and they didn't expect somebody to do it for them," says Pierratos.
Richard St. Amour has no intention of waiting for someone to do something to help his ailing son gain access to a treatment that will prolong his life.
"I'll walk from here to Toronto with a placard on my back" to demand equal access to the lifesaving treatment, vows Jessie's dad.
Richard St. Amour spends every Monday, Wednesday and Friday night with his son at hospital, even though Jessie says he wishes he wouldn't.
The teen doesn't mention it until his dad leaves the hospital room to let his son speak privately to a reporter, but Jessie says he would just as soon do dialysis alone.
"But my dad wants to be here. What is he doing here for four hours, though? I feel like I'm wasting his time. I don't tell him that because he's dad; he's going to say something."
Jessie says he won't allow his mother to come with him.
"It's because ... the first time she was here, she was really crying. She's the mommy," he says with a quick grin.
Jessie says he could curl up in a ball and do nothing, but he wants to be a positive example for people. He is speaking out because he wants people to know about nocturnal dialysis and how it could improve others' lives, not just his own.
He's become fond of his dialysis colleagues, and relates how two older patients have captured his interest. One woman is a diehard Toronto Maple Leafs' fan and bets a buck a game with another man on dialysis.
After a recent Leafs' victory, the woman paid the man with 100 pennies. When the man's team won the next game, he wrote her a cheque for a dollar.
That kind of camaraderie helps make the best of a bad situation. So do hospital renal unit staff, whom Jessie says he loves.
Growing weary toward the end of a four-hour dialysis treatment, Jessie says he hopes to enter Cambrian College in the fall, study business and enter the real estate field.
He's hoping for either a kidney transplant or nocturnal dialysis before then.
"To be honest, a transplant would be great."
Still, he knows the chance of a successful transplant is 50-50, and nocturnal dialysis is the backup plan.
"Even older people need it," Jessie says of the treatment. "You can live a normal life with nocturnal dialysis, from what I hear.
"From what I hear, it's money."
Checking the clock on his dialysis machine as it ticks away toward the end of his treatment, he says: "I really don't think (the Ministry of Health) is thinking about the people, especially in Sudbury."
cmulligan@thesudburystar.com
nocturnal home hemodialysisHow a dialysis machine works
Is long, slow, gentle, self-performed dialysis
Is done at home after a quiet dialysis machine has been installed in the bedroom
Can be done every other night up to six or seven nights a week
Delivers up to four times the amount of dialysis
Its benefits include:
None of the side effects of conventional hemodialysis
No more 'crashes' from falling blood pressure
No fluid, dietary or potassium restrictions
No need for phosphate binding medicines
No need for blood pressure medication for most patients
No need for a dialysis partner because it can be done at at home alone
Further benefits include:
Stress on the heart is diminished
Calcium deposits in blood vessels regress
Sleep patterns normalize to refreshing rest
Sleep apnea improves or resolves
Thinking clears and memory improves
Sexual drive/function improves
Source: Department of Renal Medicine, The Geelong Hospital, Barwon Health, Geelong, Victoria, Australia http://www.thesudburystar.com/webapp/sitepages/content.asp?contentid=477511&catname=Local+News&classif=
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