Kidney patients winning battle for care

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ACCENT: Kidney patients winning battle for care
By CAROL MULLIGAN
Posted 1 day ago

Joyce Paquette is battling a series of health issues no 51-year-old woman should have to face. Her career as a cardiac nurse at Sudbury Regional Hospital was cut short when diabetes caused sudden kidney failure, forcing her on hemodialysis four times a week at the hospital.

Neuropathy associated with diabetes led to a condition called Charcot foot, in which bones in the foot are so weakened by nerve damage, it's impossible for her to walk.

It has left her wheelchair bound and, after being told she had to travel by Handi-Transit from Azilda to hospital for dialysis four days a week, Paquette made a decision.

"I couldn't see it as a way of life, going to the hospital three times a week" for visits that took an entire day each with travel included, said Paquette.

"Then, when I went to four days, I thought, 'Oh my God, I can't do this.' "

That's when she called a friend at the hospital to get more information about a home hemodialysis program launched by the hospital's nephrology department.

For years, Sudbury Regional Hospital offered two options for the 225 dialysis patients it treats a year. As well as in-hospital hemodialysis, it made available another form of home treatment called peritoneal dialysis.

According to the website, MedicineNet.com, dialysis is the process of cleansing the blood by passing it through a machine. It is necessary when the kidneys are not able to filter blood. Dialysis allows patients with kidney failure a chance to live productive lives.

There are two types of dialysis: hemodialysis and peritoneal dialysis. Each has advantages and disadvantages, and patients choose the form that best matches their needs.

The hospital announced March 1 it was adding two other forms of dialysis -- short daily hemodialysis and nocturnal home hemodialysis -- to its list of treatment options.

Both are done in a patient's home, five to seven days a week. Daily short dialysis is done for two to three hours at a time. Nocturnal is done while a patient sleeps for up to nine hours.

After reading about nocturnal dialysis, "it made a lot of sense," said Paquette.

Not only would night-time dialysis free up her days, but because the treatment is done over a longer period of time, it is slower and gentler, and filters more like functioning kidneys do, offering tremendous benefits to patients.

Nocturnal home hemodialysis first made headlines in Sudbury four years ago when Richard St. Amour, the father of 18-year-old student and hockey player Jessie St. Amour, began lobbying to get access to the program for his son.

Richard St. Amour researched the subject thoroughly and concluded nocturnal home hemodialysis would give his teenage son the best quality of life and even lengthen his life.

At the time, however, it wasn't available in Sudbury.

Jessie had already suffered 30% hearing loss from Alport syndrome, a genetic condition characterized by kidney disease, hearing loss and eye abnormalities.

When Jessie's kidneys stopped functioning, he began hospital hemodialysis three days a week in December 2006. In between his four-to five-hour treatments in the evenings, the determined young man play hockey and attend school, despite the day-after fatigue that follows traditional dialysis.

In April 2007, Richard St. Amour was seething that nocturnal home hemodialysis was not available in Sudbury. One of his greatest fears for Jessie was his heart -- a very real fear given that dialysis patients often suffer heart problems, particularly an enlarged heart, because of their treatment.

"I didn't sleep at night a whole lot" in the days he was fighting for local access to nocturnal home hemodialysis for his son, St. Amour said this week.

"I paced the floors a lot. I was upset and discouraged that I couldn't do anything about it except for taking his place. That would have been the only thing. And I would have in a heartbeat. That's what you do when you're a father."

After lobbying hard for the treatment in Sudbury but to no avail, Jessie was accepted in a program in Toronto at St. Michael's Hospital. But it meant leaving the city for two months for the father and son for training -- and trading their Sudbury nephrologist, Dr. Richard Goluch, for a Toronto specialist.

The same day Jessie was to start the training, his dad received a phone call at St. Michael's Hospital a transplant kidney had been found that was a match for Jessie. The next day, Sept. 11, 2007, Jessie had transplant surgery in London and it has been a tremendous success.

Now 22, Jessie lives in Toronto and works as a carpenter. He has bloodwork done monthly to ensure the anti-rejection medications he is taking are working properly and that his kidney function is good.

Joyce Paquette is also on a transplant list for a new kidney, as are dozens of people receiving dialysis through Sudbury Regional Hospital. She has several other health complications in addition to kidney failure, but a transplant is her best option for a good life. Paquette is optimistic she may one day get one.

Until a match is found and she is well enough for transplantation, Paquette is committed to making nocturnal home hemodialysis work for her. She has only been on it for about six weeks, so it is early to know exactly what it's benefits are.

Because she was on self-care when she received hospital dialysis, learning how to hook herself up to nocturnal dialysis was easier for her than for some. Her extensive nursing background also made training easier.

Paquette "highly recommends" people considering home hemodialysis, nocturnal or short daily, be on self-care at the hospital beforehand.

She was able to do her training in about four weeks, but it's eight weeks of five-day-a-week education to learn how to dialyse properly at home.

One of the advantages of nocturnal dialysis for Paquette is that it eases problems people have with restless legs syndrome, a painful condition.

Six weeks into home treatment, "I still have restless legs, but not as bad," said Paquette.

She gives credit to dialysis nurse Adrienne Barrett for being "an excellent, excellent trainer," and for putting a great deal of work into manuals for home patients that offer simple, sensible instruction.

Paquette also offered feedback for the teaching materials.

"Say it's 2 o'clock in the morning and this alarm's going off and I want to know what it is," she said. Information is available to help a patient deal with that.

Paquette admits nocturnal home hemodialysis may not be for everyone. "You have to be able to string up a machine and put yourself on it," she said.

She can't emphasize enough the importance of being on self-care at hospital before trying dialysis at home.

"Had I not had self-care, the training for the nocturnal would have blown me away," she said.

If there is a problem with the system, whether it's night or day, there is always someone at the hospital to call for help.

"I'm fairly calm, I'm methodical, I try to make it work," said Paquette. If something does go wrong, "it's not like I'm going to die anyway."

TOUGH FIGHT

Dr. Richard Goluch fought long and hard for funding to offer dialysis patients a full range of options for treatment in hospital and at home.

He was delighted last month to announce the hospital had received the money to offer 12 people home dialysis in the form of short daily or nocturnal.

So far, only four patients are on hemodialysis at home, but several more are on a waiting list for training. About 80 patients are on peritoneal dialysis at home, a form of treatment that is much less complicated and easier to learn than hemodialysis.

Goluch said the culture is slowly changing so that people who require dialysis will feel comfortable doing it in their own home, away from a hospital dialysis unit.

"As people become more knowledgeable and see others on it, a lot of interest starts to develop and we're seeing that now," Goluch said this week in his office on the nephrology floor at Sudbury Regional Hospital.

The dozen spots he has available are open to people throughout northeastern Ontario, and he encourages people in Sault Ste. Marie, Manitoulin Island, Timmins and North Bay who are interested to ask for a referral to his program.

There is hard scientific evidence to show that people on either short daily or nocturnal home dialysis do better.

"Patients feel better, they look better and they do more," said Goluch.

A trial presented at the last meeting of the American Society of Nephrology, which Goluch attended, showed "significant" results in two measurements.

One was survival and heart size. The other was survival and quality of life measures.

The heart enlarging and performing more poorly is a complication of dialysis, so good results in that area were encouraging.

The heart is a problem for people on dialysis in several areas. Many dialysis patients are older and suffer from high blood pressure due to the fluid retained between conventional dialysis treatment.

"More frequent dialysis is a significant benefit," he said.

With dialysis, the "biggest bank for your buck" is during the early hours of blood cleaning when blood is the dirtiest.

"That first hour or two you're really getting very efficient (dialysis), then it falls. Using that concept, if you do it every day for 2.5 to three hours, you're really getting your maximal cleaning."

Another benefit for patients is they can eat and drink more between dialysis treatments. Another issue is the severe fatigue people feel the day after dialysis. Then just when they are starting to come around, it is time to dialyse again.

"It's a vicious cycle. People on (dialysis) every day don't get that washout."

People like Paquette who opt for home hemodialysis must have separate water and electrical lines installed in their homes. Paquette said she received about $2,000 in funding from the hospital for the installations.

Goluch said it's still a point of contention who should pay for the plumbing and electrical work. The hospital does have technical people to assess patients' homes and advise them on what needs to be done.

He is hoping government will pass a bill taking into consideration paying the cost for people to receive home treatment.

While it does take a commitment to undergo the training for home hemodialysis, it is not rocket science.

And if there is a problem, it is not life-threatening, as Paquette points out.

Said Goluch: "You shut it off, you pick up the phone, and you go in (to hospital) and we'll reassess everything."

Still, people are not lining up in huge numbers for home hemodialysis.

But get a few people on it, experiencing good results, and the word will spread.

Everyone knows someone on dialysis, said Goluch.

"If you have a few on, and some of their friends (or other) patients see how well they look and how they're doing, that really changes their mind."

Not everyone is a candidate, but if they are, especially if they are awaiting a transplant, home hemodialysis is a great option.

"I'm very, very happy," said Goluch of the full range of services he now can offer patients. "You can have everything."

Goluch gives credit to Richard St. Amour, other community activists such as Homer Seguin and Clarence Soule, and the community itself for demanding access to a type of treatment that was available in southern Ontario and not in the North.

Seguin and Soule lobbied hard for the availability of nocturnal home hemodialysis in Sudbury.

Seguin has had diabetes for years and is on peritoneal dialysis at home after researching the type of dialysis that would be best for him.

He chose peritoneal after being on traditional hemodialysis at the hospital.

"I've been on hemodialysis, and I tell you it's hell," said Seguin last week.

Because he went for traditional dialysis three times a week, he would gain between seven and eight pounds of fluid in between treatments. Weekends were the worst.

The fluid remained in his system, "toxic fluids," he said, and his blood pressure would rise because of it.

When he would go to hospital for four-hour treatments, they would "crank up the machine higher and higher. And when they did that, your blood pressure dives, and you get all kinds of funny feelings, weaknesses, and they add salt to you.

"Well, the salt is terrible for you," said Seguin. "I'm on a salt-restricted diet and they're pouring salt into my blood to bring my blood pressure up."

Seguin does nocturnal dialysis now, but of the peritoneal variety, and is feeling much better for dialysying five or six nights a week.

"It's cleaning me every day and doing a good job."

Seguin said he wishes others who are trying nocturnal or short daily hemodialysis the best of luck.

"It will do her well," said Seguin of Paquette beginning home hemodialysis. "It will prolong her life. The key to this is that it not only enhances your health, it prolongs your life. And when you talk about somebody's life, you're talking about the most important part of their being. Prolonging your life is something fantastic."

Seguin was happy to work alongside St. Amour, Soule and others who lobbied to get home hemodialysis in Sudbury, including his own nephrologist, Goluch.

But he said patients who undergo traditional dialysis at hospital deserve a lot of the credit. He and Soule circulated petitions there, with "the blessing" of hospital officials, demanding access to home hemodialysis.

Seguin believes those signatures made a difference in getting funding for Sudbury's program.

"It's a win-win financially," said Seguin. "It's cheaper for the hospital and it's so much better for the patient."

A retired mining health and safety activist who still gets behind a good cause, Seguin believes authorities will listen "if it's a worthwhile cause, if people have a justifiable cause.

"A PET scan is a good example," said Seguin, referring to a campaign begun by Sudbury's Sam Bruno, who died last July, to have a positron emission tomography scanner installed at Sudbury Regional Hospital.

"People gotta get behind it," he said of the PET cause, "and if we get behind it, we will win. It could take time, but we will win. And that's what happened to this nocturnal."

cmulligan@thesudburystar.com

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