ImPACKD News Articles

Defensive coping and health-related quality of life in Chronic Kidney Disease

Thu, 14 Jul 2011 18:55:03 GMT

Coping with the stresses of chronic disease is considered as a key factor in the perceived impairment of health related quality of life (HRQL). Little is known though about these associations in chronic kidney disease (CKD).

The present study aimed to investigate the relationship of defensive coping and HRQL among patients in different CKD stages, after adjusting for psychological distress, sociodemographic and disease-related variables.

Read the Study Here

Patients with chronic conditions get one-stop care

Mon, 11 Jul 2011 16:46:00 GMT

For the first time in Canada, patients with chronic conditions – such as diabetes, high blood pressure or heart failure – will soon be able to do one-stop shopping for all their medical needs.

“The population that we’re caring for is increasingly aging and living with multiple medical problems,” said Gillian Hawker, chief of medicine at Women’s College Hospital. “But our health-care system hasn’t been set up to deal with multiple chronic conditions.”

That’s why Women’s College Hospital in Toronto is opening the Centre for Ambulatory Care and Education Complex Care Clinic on July 19. It is now taking referrals from physicians and community-care access centres for patients with one or more chronic illnesses.

Read the rest of the story here

Benefit for Infant with Chronic Kidney Disease

Fri, 08 Jul 2011 13:33:00 GMT

ROCKWELL, IA – Finding out your child has a chronic kidney disease before he’s even born…

That’s the reality for one couple in Rockwell. But the support they’re receiving from the community, could be a lifesaver.

“Drake has chronic kidney disease, he was born with it. We found out just before I ended up having him,” said Taiya Jones, mother of Drake Simon Jones.

Since he was born, Drake has been in a never ending fight for his health…

Read the rest of the story here

American Kidney Fund Announces its Multi-City Kidney Action Day and Steps That Count Walkathon to Fight Kidney Disease

Tue, 05 Jul 2011 19:41:30 GMT

Walkathon, Free Kidney Health Screenings and Family Activities Scheduled for Washington, San Antonio, Houston and Atlanta

ROCKVILLE, Md., June 1, 2011 /PRNewswire-USNewswire/ -- Today, the American Kidney Fund (AKF) announced its multi-city schedule for Kidney Action Day, which includes the Steps that Count fundraising walkathon. The organization will kick off the event, which features free kidney health screenings and family-friendly activities, at Nationals Park in Washington, D.C., on Saturday, June 11, 2011, followed by events in San Antonio, Houston and Atlanta later in the year.

Kidney Action Day brings together thousands of health advocates, patients and members of the community each year to raise funds for the American Kidney Fund's programs and services that help kidney patients and those who are at risk of developing chronic kidney disease (CKD). The event is also designed to educate those who are at risk about the simple actions that can help to prevent CKD.

Read the rest of the story

Dietary Reference Intakes for Calcium and Vitamin D

Wed, 20 Apr 2011 16:04:00 GMT

Calcium and vitamin D are two essential nutrients long known for their role in bone health. Over the last ten years, the public has heard conflicting messages about other benefits of these nutrients—especially vitamin D—and also about how much calcium and vitamin D they need to be healthy.

To help clarify this issue, the U. S. and Canadian governments asked the Institute of Medicine (IOM) to assess the current data on health outcomes associated with calcium and vitamin D. The IOM tasked a committee of experts with reviewing the evidence, as well as updating the nutrient reference values, known as Dietary Reference Intakes (DRIs). These values are used widely by government agencies, for example, in setting standards for school meals or specifying the nutrition label on foods. Over time, they have come to be used by health professionals to counsel individuals about dietary intake.

The committee provided an exhaustive review of studies on potential health outcomes and found that the evidence supported a role for these nutrients in bone health but not in other health conditions. Further, there is emerging evidence that too much of these nutrients may be harmful.

Read the IOM Report Brief (PDF) »

A stunning comeback to an elite sport

Mon, 02 Aug 2010 23:02:00 GMT

By Randy Starkman, Toronto Star

The official line on Marie-Eve Chainey in the women's high jump read "NH" — shorthand for "No Height." Not exactly a fitting designation for an athlete who truly soared.

There are comebacks and there are comebacks.

For some athletes at this past week's Canadian track and field championships in Toronto, a triumphant return to form meant posting fast times after a slow season.

For Chainey, it meant returning to elite competition after a nine-year battle with kidney disease that nearly killed her several times and forced her to endure some 800 blood transfusions. Three years ago, she was unable to walk and even lacked the strength to wash her hair.

Chainey calls high jumping her "happy place." So on the eve of the national championships, the 27-year-old from Kapuskasing was not about to be deterred by a difficult night of dialysis that left her severely hydrated.

"I couldn't walk properly, I couldn't talk properly, I couldn't see properly when I got up in the morning," said Chainey.

"But I'm very stubborn, I'm very hard-headed. Something like this I just had to find a way that I would be able to jump, no matter what."

She's definitely a woman on a mission.

Her objective is to create awareness of the benefits of nocturnal hemodialysis, which she says allowed her to begin training again three years ago. Chainey undergoes dialysis for eight to nine hours while she sleeps, six nights a week.

"That's what I'm trying to be is proof that nocturnal works," said Chainey, who attends the University of Ottawa.

"I got back my lifestyle.

"I work as a personal trainer. I train for high jump and I'm in nursing at school. I couldn't do this if it weren't for nocturnal."

Chainey went to Spain when she was 18 to learn the language and continue her high jump training. When she began to put on weight, she didn't think much of it at first, attributing it to the change in food and eating late. But she became so dizzy one day she had to be hospitalized. That's when she got the news: Her blood platelets were sticking together and clotting her kidneys to the point they no longer worked. To this day, she's unsure what caused it.

She hasn't known life without dialysis since and has had to overcome four relapses and countless other obstacles, including going blind for two months.

She was told over and over she'd never jump again because her muscles were too damaged. But for Chainey, jumping is like breathing. As a 14-year-old, she would often travel from Kapuskasing to Toronto so she could train under coach Gary Lubin at York University.

"From when I got sick, the goal that I had was to just be back jumping," she said. "Jumping was basically my happy place. Even now more so. Because I'm sick and there's so much going on, when I go to high jump, I don't think about anything else than just high jump and enjoying it. It is definitely my getaway. I feel normal because I don't have to think about anything else."

Chainey certainly felt jitters at the championships; her hands wouldn't stop shaking once the competition began. She didn't clear the starting height of 1.50 metres, which she had managed to get over in practice. Still, you'd be hard pressed to find a happier last-place finisher anywhere.

"Just being out there, especially when they lined us up and they introduced us to the crowd, it was a special moment that I'll always remember," she said. "I didn't feel comfortable at first because I didn't feel I belonged. But although I didn't get a height, I still feel I belonged there. It felt awesome just to have the opportunity and experience this."

Chainey is very involved as a peer support worker with the Kidney Foundation of Canada and works with the Shad Ireland Foundation Canada, a non-profit group committed to helping people with kidney disease. On Aug 15, it is holding runs in Ottawa to raise awareness: a 1-kilometre walk or run aimed at dialysis patients and 5K and 10K runs for others.

"Most cases of kidney disease could have been prevented with better nutrition, better physical activity, but mainly the control of diabetes and the control of blood sugar," said Chainey.

She particularly wants to spread the word on nocturnal hemodialysis, which isn't widely available in Canada.

She said it's made a huge difference in her life. She used to take 32 pills a day, but is now down to seven.

"Everything is better," she said. "I haven't been in hospital for years, whereas before it was at least three or four times a year.

"We need more research. We need more proof."

Chainey feels kidney disease has cured her of her perfectionism.

"I've always been a straight A student, always done well in sports and piano," she said. "So when I got sick, my life wasn't perfect anymore. I had to learn how to live with what you have, that I had limits. That was a very good lesson for me, to know that things aren't always perfect but you can still make the best of it.

"At 18 years old and you're so close to die so many times, it definitely gives you a different perspective on life."

Among those not surprised by her determination is York's Lubin, who coached two-time world championship medallist Mark Boswell as a youngster.

"She's a classy kid," said Lubin. "With her, it's always everybody else first. She used to come down from Kapuskasing, a 12-hour train ride … in order to train. When I talk to my athletes about dedication, I say, ‘Don't tell me you came from Burlington. You think that's far? How about Kapuskasing?' This is the type of person she is."

The downside of calcium intake

Mon, 02 Nov 2009 20:31:00 GMT

It helps keep bones strong, but can be dangerous for kidney patients

By Melissa Lampman, Kamloops This Week

Calcium contributes to strong bones, healthy teeth and robust cells.

But too much calcium for people with chronic kidney disease (CKD) can be a dangerous combination.

It's a lesson Rick Jules learned the hard way, having to undergo quadruple bypass surgery two years ago because of advanced vascular calcification.

"I hit a home run there," said Jules, a former councillor for the Kamloops Indian Band.

"I figured it was just cholesterol or lifestyle."

Jules has CKD but never knew the calcium supplements used to control the phosphate levels in his body could lead to heart problems.

"Us people who have a hard time avoiding minerals, this is dangerous for us because it goes into the soft tissues and organs of body and we end up with calcium spots all over — and it plugs up your arteries," Jules said, noting he could see the calcification in an X-ray.

"Wow, I could see the white spots on my heart and I could see the white chalk lines where my veins are," he said.

"They shouldn't show up like that."

Jules now knows there are choices when it comes to keeping phosphate levels in check.

To save others from having to go through a major surgery — or even death — Jules and a group of others with CKD have launched Improving Patient Advocacy in Chronic Kidney Disease (ImPACKD).

"A lot of people don't make it to dialysis even — they die of heart attacks."

The group of CKD patients and medical specialists aims to raise awareness about the risks of too much calcium in people with CKD, knowing dietary limits and ways to keep those in check.

"I didn't know there were choices," Jules said.

"If you could save someone from having to go through heart operations, wouldn't you?"

Published in:

Kamloops This Week, November 2, 2009, page A3

Raising awareness about excess calcium for CKD patients

Fri, 30 Oct 2009 19:11:00 GMT

Patient advocacy group hopes to spread awareness about dangers of calcium overuse

By Alexandra Pope, Sun Media

Carroll Thorowsky's husband Marshall had been on kidney dialysis for two years when the sores appeared on his right shin.

The Thorowskys had no idea that the sores, which soon began to turn black, were caused by something that was supposed to be helping Marshall manage his chronic kidney disease (CKD). But when new sores appeared on the back of his leg, they knew they had to find out what was going on.

It turned out that the calcium Marshall had been taking to help bind and remove excess phosphorus — a mineral that is difficult to filter out through dialysis — from his bloodstream had actually hardened and lodged in the veins of his right leg, cutting off the blood supply.

A little-known complication of excess calcium in CKD patients caused Marshall nine months of excruciating pain, coupled with the fear that his leg would have to be amputated. For Carroll, it was a harrowing emotional journey that inspired her to take action to make other people aware of the risks excess calcium poses to CKD sufferers.

"I don't want to see one other person have to go through what we went through in that few years," she said. "It's just devastating; it really affects you emotionally, psychologically, physiologically."

The Thorowskys are members of ImPACKD (Improving Patient Advocacy in Chronic Kidney Disease), a group of CKD sufferers, their caregivers and health care professionals from all across Canada who want to spread the word about the risks of calcium overuse.

According to a press release by Chrome Communications, which is helping ImPACKD spread the word about calcium overuse, Health Canada recommends that adult Canadians ingest between 1,000 and 1,200 milligram of calcium per day, up to a maximum of 1,500 milligrams, to maintain good health.

However, these guidelines are targeted at adults with healthy, functioning kidneys who can eliminate excess minerals from their body through their urine. A Canada-wide study of dialysis patients suggests that the daily calcium intake from phosphate binders like the ones Marshall was taking may be double or triple the maximum limit established by Health Canada.

ImPACKD's goal is to have that disparity recognized by Health Canada and health care professionals so current and future CKD sufferers don't have to learn the hard way about the risks of calcium overuse, Carroll said.

"(CKD) really is a journey — one that I'd rather not experience, but that's been my husband's journey so I just had to face up to it," she said. "I just want to do as much as I can so others don't have a similar experience."

The members of ImPACKD have met several times in Toronto to discuss their goals, and Carroll said just hearing from other CKD sufferers who have also experienced complications from calcium overuse has helped her cope with Marshall's ongoing health problems.

"It's really important to me and to my husband that we educate and make people aware of this," she said. "As we sit around the table, there's others with similar stories. It's an acknowledgment that there's this issue out there, but also support, and being of support to others as they go through this journey."

Aside from the calcium overuse awareness project, ImPACKD hopes to stay together to be a patient advocacy group, looking out for other issues affecting CKD patients and acting as a bridge between those patients, their caregivers, families, doctors and policy-makers.

"We're just on a quest that we hope will make a difference for patients with CKD," Carroll said.

Published in:

Devon Dispatch, October 30, 2009, page 22
Leduc Representative, November 3, 2009, page 10

Calcium can be a killer for some

Fri, 23 Oct 2009 00:44:00 GMT

By Kevin Connor, Sun Media

Marie-Eve Chainey is one of the few patients with chronic kidney disease who knows that calcium could kill her.

There are more than 2 million Canadians with CKD, with many unknowingly putting their lives at risk of cardiovascular disease and other illnesses by taking too much calcium, according to a new coalition formed to fight the problem.

Chainey, 26, was diagnosed with CKD when she was 18 years old, and since her kidneys needed to be removed, she has been on dialysis ever since. "At 18 I was being told I will have heart problems (if she didn't monitor her calcium intake)," the Ottawa woman said.

Health Canada says a person shouldn't take more than 1.5 grams of supplemental calcium a day to avoid serious health complications.

'SERIOUS RISK'

But CKD patients are ingesting three times this limit to help control the phosphorous levels in their bodies, even though they're unable to rid themselves of the excess.

The Improving Patient Advocacy in Chronic Kidney Disease coalition says most patients with CKD have never spoken to their doctor about the risks of calcium overuse.

"Most CKD patients are unaware that calcium can pose a serious risk to their already delicate health, and I used to be just like them," says Rick Jules, a member of the coalition who underwent bypass surgery in 2007.

Calcium-based phosphate binders are an effective method in the treatment of CKD, said Dr. David Mendelssohn, head of the department of kidney disease research at Humber Regional Hospital.

"They need to be prescribed in moderation so we can maintain an optimal mineral balance for patients rather than removing one mineral and loading them up with another," Mendelssohn said.

Published in:

Toronto Sun, October 22, 2009, page 10