Tag Archives: ethnicity

After Daughter’s Death, Dad Bikes 2,000 Miles To Hear Her Heartbeat One Last Time

You may have seen this in the media recently. It’s a very moving story about a father who had lost his daughter, Abbey Connor, to drowning, travelling by bicycle to raise awareness about organ donation. He arrived at his ultimate destination, the home of one of the recipients of his daughter’s donated organs, specifically, Loumonth Jack Jr., who received his daughter’s heart.

Although the emphasis is rightly on the power of organ donation to change lives, in this time of ongoing racial tensions it probably should not be lost on those who view the video that the donor was a young white woman and the recipient was a young black man. Does it not make the embraces between father Bill Connor and Loumonth and his various family members all that much more powerful?

Here is the story, written by McKinley Corbley and published on the Good News Network:

After Daughter’s Death, Dad Bikes 2,000 Miles To Hear Her Heartbeat One Last Time

This dad couldn’t contain his emotions when he heard his daughter’s heartbeat for the first time in six months.

That’s because 21-year-old Loumonth Jack Jr. was first diagnosed with a rare heart defect in January, and he was only given ten days to live unless he underwent a heart transplant.

In the very same week, Abbey Connor was found unconscious at the bottom of a hotel pool while on vacation in Cancun, Mexico. Connor was then taken into a Fort Lauderdale hospital where doctors discovered that she had irreparable brain damage.

Connor’s organs were harvested and Jack Jr. became the lucky recipient of her heart.

Continue reading here.

 

B.C. hospital kept patient alive for 10 days because family’s culture did not accept brain death

I am reposting this article from the National Post. It is not specifically about organ donation, but it is certainly relevant to the topic. Is brain death a true indication of death, or does death only come when the heart ceases beating? I highlight the following paragraph because it points out the importance of brain death for organ transplant medicine:

In the past, people were considered officially dead only when their hearts stopped beating. The notion of brain death — an irreversible loss of all brain function — emerged in the 1960s in response to medical technology that could keep the heart and lungs functioning mechanically. Blood continuing to flow through the body also presented prime conditions for removing organs for transplant.

Click here to read the whole article.

I’m curious what you think. Do you hold beliefs regarding the acceptability of brain death as a sufficient criterion for “real” death? Is medicine purely a science, or does culture, tradition, religion, etc. play a role in its practice? What role should the family play in the care of a hospitalized person near death?

Do you support presumed consent for deceased organ donation?

A couple of days ago, I posted a report about the Kidney Transplant Summit in Vancouver on May 1. Below is the news release from the Kidney Foundation, reporting on the Summit. Rather remarkably, the Kidney Foundation is recommending that BC adopt presumed consent legislation in an effort to increase the number of kidney transplants in the province.

This is a big deal. Presumed consent is not currently the policy anywhere in Canada and it would take not only legislation, but, I suspect, a rather significant culture shift as well for this to become reality. Frankly, I would love to see this whole discussion become irrelevant. How? By all of the people who say they are in favour of organ donation going to the appropriate website and consenting to be an organ and tissue donor. As the release states, 95% of British Columbians say they support organ donation, yet only 19% are registered. Similar disparities exist across the country.

Read the news release here, and let me know what you think.

Kidney Transplant Summit recommends presumed consent legislation to increase organ donation in BC

#Video – Patient says complaint got her kicked off kidney transplant list

Alice Zhang says complaining about care got her kicked off B.C. kidney transplant list

I am reposting this from the CBC website. There is a video as well as extensive article about Alice Zhang’s situation. It raises questions about ethnic and ethical factors in organ transplantation.

A couple of things strike me about this article. The first is her contention that her complaints have resulted in a provisional diagnosis of mental illness. Kidney disease is tough and I can well imagine that a person on hemodialysis could sink into a pattern of complaints. They don’t feel well. It’s hard to “maintain an even keel” in circumstances like that. Especially given that it’s going on six years since she went onto the transplant list. It has barely been six months for me. If I’m still waiting for a transplant in 2021, I might be a little more complaining as well. Whether she is mentally ill and therefore incapable of cooperating in her ongoing therapy is an important question to answer, though. It is good that she is having her mental health reviewed.

The second thing is the fact that she has been waiting for six years for a kidney transplant. This is not explored in this article, but what factor does ethnicity and culture play in the availability of a compatible donor for Ms. Zhang, either deceased or living? According to the article “An Overview of Transplantation in Culturally Diverse Regions,” by Gabriel Oniscu and John Forsythe, point out that East Asian immigrants, deeply rooted in the Confucian tradition of respect for the integrity of dead bodies, have lower donation rates.

Please watch the video and read the article. And, since this is an article about a situation in BC, if you are a British Columbia resident, please register as an organ donor here:  https://register.transplant.bc.ca/

Alice Zhang says complaining about care got her kicked off B.C. kidney transplant list

‘Difficult’ patient involuntarily committed by psychiatrist and removed from transplant list

By Natalie Clancy, CBC News Posted: Feb 19, 2015 5:00 AM PT Last Updated: Feb 19, 2015 7:33 AM PT

Alice Zhang, a mother who speaks only Cantonese, says she’s being denied a life-saving kidney transplant because doctors at Vancouver General Hospital have decided she is mentally ill.

The 45-year-old and her family say she has no history of mental illness and that she was only removed from the transplant list for complaining about her treatment in the hemodialysis unit.

“That’s what started this whole situation” said Zhang, speaking through an interpreter. She said doctors threatened to admit her involuntarily under the Mental Health Act

“They said if I kept making noise, they would drag me into the mental health ward and diagnose me as having mental illness” which is where she ended up on two occasions.

To read more and watch the video, click here.

#Video – Documentary hopes to break taboos about organ donation

The following is a repost from the online edition of The Record, from Waterloo, Ontario.

Documentary hopes to break taboos about organ donation

After the Fall: A Breath of Life shares Shilpa Raju’s journey through two bouts of cancer, a double lung transplant and efforts to raise awareness about organ donation

 

Shilpa Raju

Shilpa Raju

Shilpa Raju could give a master class in adaptation.

She’s spent her 20s lurching from one medical crisis to another: cancer to double lung transplant to cancer again.

“I’ve learned to walk three times in my life and I’m not even 30,” says the upbeat epidemiologist.

“I think we have an amazing ability to adapt,” she says. “You keep doing it until you hit a threshold.”

Raju knows thresholds. They’ve been captured in a Toronto-shot documentary, with a goal of promoting dialogue about organ and tissue donation in the South Asian community and beyond.

After the Fall: A Breath of Life examines the experience of Raju and her single mother, whose hesitations about modern health care solutions stem from a lack of awareness. That’s often the case for Raju’s Indian community, where myths of organ transplants are passed around.

Raju’s medical journey began in 2007. She was 21, in her final year of an undergraduate degree in life sciences. She was accepted to do a master’s in public health in the U.K. when she was diagnosed with Hodgkin’s lymphoma.

She was successfully treated for the lymphoma, but gave up the overseas program as it began right after her chemo and radiation. Instead, she set her sights on a similar degree in Vancouver.

But before she could get there, she developed pulmonary fibrosis — a known side effect from the cancer treatment. It caused scarring on the lungs and a steady decline in pulmonary function.

Unable to fly because of it, Raju took the train from Toronto to Vancouver. After she finished the Vancouver program, the fibrosis got much worse and life became increasingly compromised.

“You adapt to it,” Raju recalls. “I was trying to maintain my life the way I thought it should be. It got to the point that just walking from my bedroom to the bathroom was exhausting.”

Raju was told she’d need a double lung transplant, a solution that didn’t sit well with her mother.

“My mom found it so difficult because she had seen me go through cancer,” Raju recalls. “She understood that the reason I needed the transplant was because I had been treated for something else. For her it was very scary.”

The transplant prospect caused a cultural clash, with Raju’s mother getting her support through her Hindu temple community. “Her faith was so strong she thought I’d just get better and wouldn’t need a transplant,” Raju says.

Hamid Slimi is an Imam who also works at teaching the Muslim community about religiosity and transplant. He believes low donor rates are more of a cultural than religious issue.

“With education and common sense, people understand if it’s OK to take an organ, it’s OK to donate,” he says.

After four false alarms, Raju got new lungs in November 2012.

And indeed, her mother’s worst fears came true, when a year later Raju was diagnosed with a form of cancer called Post Transplant Lymphoproliferative Disorder (PTLD). She spent another four months hospitalized, with numerous setbacks.

But she made it. Now in good health, Raju embraces life fully. She just celebrated her 29th birthday by going out dancing with her friends, with no restrictions.

“I’m so insanely lucky to be alive,” she says. “When (my mom) sees the quality of life I have now and how happy I am, she completely understands why it’s a good thing it happened.”

Her experiences prompted Raju to promote dialogue about transplant awareness in her South Asian community and beyond. “These discussions are not open in most communities,” Raju says.

On board to raise awareness is Fatima Baig, a Pakistan-born Toronto resident who recently received her second liver transplant.

“Lots of people are worried that their religion doesn’t permit (donation). A lot of people are worried that they’re not going to be handled respectfully,” she says. “But that’s not true at all.”

The film is directed by Rose D’souza and produced by Pam Sethi, friends of Raju’s who witnessed her experiencing one complication after another.

“This is a story Pam and I felt is important to share, especially for ethnic communities in Toronto where transplant awareness is low and many myths persist,” D’souza says.

First Nations People and Chronic Kidney Disease

The following is from the Kidney Foundation of Canada website. Further below is an article from the Comox Valley Record on Vancouver Island, British Columbia, describing an initiative to explore the high rates of kidney disease and low rates of kidney donation among the aboriginal population.

Did you know that people of Aboriginal ancestry are at higher risk than the average population for kidney disease?

According to an article published by The Pediatric Renal Outcomes Canada Group (PROCG), which includes three KRESCENT researchers, Aboriginal children with kidney failure were also less likely to receive a kidney transplant compared to white children.

To help improve prevention and detection of CKD in Aboriginal populations, The Kidney Foundation Manitoba Branch has developed an Aboriginal curriculum for primary and secondary prevention of kidney disease, including screening. And in 2010 our Saskatchewan Branch received funding to work with three First Nations communities on a project called Building Bridges, in which participants received information about chronic kidney disease (CKD) and were also screened for it.

In addition the Foundation has funded the following research related to Aboriginal People:

  • Facilitating integrated and culturally relevant health care for rural aboriginal people who undergo hemodialysis in an urban centre: an intervention development study
    Dr. Barbara Paterson, University of New Brunswick, Allied Health Research Grant 2007 – 2009
  •  A research program to study access to kidney transplantation for Aboriginal Canadians
    Dr. Karen Yeates, Queen’s University, Biomedical Fellowship 2006 – 2008
  •  Ethnocultural beliefs regarding organ donation
    Dr. Anita Molzahn, University of Victoria, Allied Health Research Grant 1999 – 2001
  • Organ donation by First Nations People
    Dr. John R. Jeffrey, Health Science Center (Manitoba), Special Award Organ Donation 1999 – 2001

– See more at: http://kidney.ca/page.aspx?pid=2019

Kidney Foundation presentation hopes to engage First Nations people regarding organ donor program

Right now, there are more than 19,000 aboriginal people in British Columbia with chronic kidney disease, and well over 100 in need of a kidney transplant. Many will die waiting.

“Every community in B.C. shares a similar story of needing more kidneys than there are available for transplant,” said Karen Philp, executive director, The Kidney Foundation of Canada, B.C. Branch.

“The research shows 95 per cent of British Columbians support the idea of donating a kidney to someone in need, but only 19 per cent are actually registered on B.C.’s organ donor registry. We want to change this story and invite the public to join the conversation.”

Philp said that when it comes to B.C.’s aboriginal population, the percentage (of registered donors) is even lower.

“We want to find out what some of the barriers are, when it comes to kidney donation in those communities,” she said.

The Courtenay Community Conversation will be held on Thursday Nov. 13 at 2 p.m., at the K’omoks Band Hall on Comox Road. Members of the public are invited to share their thoughts and experiences, as well as hear from special guest speakers and health care experts about the impact of kidney disease in the community.

Liz Hanuse and her son Victor, who received a kidney transplant from his mom in 2009, are the hosts of the Community Conversation in Courtenay.

“My son would not be here today if he didn’t have both his kidneys taken out and mine put in,” said Liz.

“By deciding to donate his kidneys for research my son was able to help the kidney disease research cause. My hope for the future is that all Nations see that each of us can make the difference in someone else’s life. Giving the gift of life and knowing that someone will have another chance is so important. I believe in paying it forward.”

Throughout the province, The Kidney Foundation of Canada, B.C. Branch, is hosting 12 Community Conversations, including this one in Courtenay, to ask people to help identify the barriers that stop people from registering as organ donors as well as the solutions to increase the number of people receiving a kidney transplant in their community.

The Kidney Foundation is committed to increasing kidney transplant rates by 50 per cent over the next five years.

This conversation is the first step towards this goal.

Members of the public can learn more and register by calling 604-736-9775 or visiting the Foundation’s website at www.kidney.bc.ca.

“People are dying every day…because they need a donor”

Carrying on the theme of religious and cultural barriers to organ and tissue donation, here’s a compelling story from the UK about a young woman from the Pakistani Muslim community who was in need of a bone marrow transplant.

http://www.telegraph.co.uk/health/11172662/Bone-marrow-transplant-teenager-I-feel-angry-that-my-community-let-me-down.html