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TOMORROW – April 20th – is National Organ Donation Week! In honour of Organ Donation Week, we invited organ donors and recipients to share their story. Thank you to Jennifer and Kayla for sharing this moving story, and thank you to our #4Eva volunteer, Bria, who put together this blog!
I asked Jennifer about National Organ and Tissue Donation Awareness month, the 65_RedRoses documentary, what she has learned from having a daughter with CF and how her life has changed since her daughter Kayla received her double lung transplant. She wrote this beautiful response.
My daughter Kayla is 24 years old and was diagnosed with Cystic Fibrosis at age 5. As a child she was very stable but when she was 12 she started having very serious gastrointestinal bleeds. Liver disease isn’t as common in people with CF in comparison to lung disease but it is a complication of Cystic Fibrosis. At the time, Kayla was still only being admitted to the hospital for “tune ups” once a year but never had severe lung issues. As her liver started to fail and the GI bleeds became more frequent there was talk about putting Kayla on the liver transplant list. Kayla was listed on the national list for a year. We kept a beeper on us and lived an hour away from the transplant center.
Kayla’s liver continued to fail while waiting for a transplant. She would throw up liters of blood at a time and required a lot of blood transfusions. It was terrifying to watch. When we were finally informed about live donation I was tested and was a match but my liver wasn’t big enough. We knew we couldn’t wait any longer and if a match wasn’t found we knew Kayla would pass away while waiting on the list. Kayla’s step father was tested and was a perfect match.
May 15, 2006, on Mother’s Day, Kayla and her father underwent surgery in Ontario. Her father donated 60% of his liver. Having both of them in surgery was scary. My husband recovered extremely well and his liver was back to normal within a few months. Kayla’s recovery was slower; she ended up back in surgery a week later due to a bile duct leak. She was extremely sick for weeks due to the anti-rejection meds but once that was straightened out she flourished. Kayla was only 16 years old. She had to be home schooled through grades 10 and 11 but she was able to go back for grade 12 to graduate with her class.
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We are pleased to announce the screening of 65_RedRoses as part of the Exploring Ethics Through Film series at the Spring Garden Public Library in Halifax on April 22! Organizer Alana guest blogs about the event, and how she plans on using the film to think about the ethics of organ transplantation!
On April 22, 2014 my research group, Novel Tech Ethics, will be putting on a screening of 65_RedRoses at the Spring Garden Memorial Public Library in Halifax, Nova Scotia. The
screening will be part of a bi-annual film series put on by our team, intended to explore issues in medicine and ethics. When I took on the task of organizing the series this Spring, I quickly decided to focus on the ethics of organ transplantation, in part because I knew that I wanted to use the opportunity to share Eva’s story with our audience.
I saw 65_RedRoses for the first time about a year ago. I watch a lot of documentaries, and as a health researcher, a lot of documentaries about illness and wellbeing—65_RedRoses was different. Eva’s story was so memorable and so moving that I found myself thinking about Eva from time to time, and about how open and optimistic and kind she was. While Eva’s story is in part about illness and organ transplantation, it offers something greater about how to live (and die) with passion, generosity, honesty and love.
As part of our series on the ethics of organ transplantation, Eva’s story also offers us the chance to examine how technology can address the loneliness that illness often entails. Through her livejournal, and through her connections with Meg and Kina, Eva was able to reach across long distances and break out of the isolation imposed on CF patients. Furthermore, through the making of 65_RedRoses, Eva and the filmmakers have been able to reach out even further, sharing Eva’s message of love and hope around the world.
We are pleased to be able to present 65_RedRoses as part of our series, and hope to see you (at least those of you who live near Halifax) there.
(photo credit: Rosipaw)
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Thank you to our volunteer Bria who has again graciously offered her time and awesome writing skills to contribute to this guest blog – Thanks Bria!
April is Organ Donation Month!
This month is dedicated to increasing awareness for organ and tissue donation as well as celebrating the cause. April 20-27 is National Organ & Tissue Donation Awareness Week in Canada! If you aren’t already a registered organ donor this is the perfect occasion to become one by signing up online. Although a large number of people support organ donation and agree on its invaluable contribution to the lives of those awaiting transplants there is still a lack of willingness to register and become an organ donor. April comes with the reminder that hundreds of people in BC are waiting for transplants and thousands of Canadians are added to the organ wait list every year. Each donor has the potential to save up to 8 lives. As we approach National Organ Tissue and Donation Awareness Week at the end of the month it is important to encourage Canadians to register to become organ donors.
Educational initiatives and advocacy are some of the most effective means in initiating change and saving lives. Eva’s story and the 65_RedRoses film become especially relevant this month, demonstrating the difference organ donation can make and how thankful donor recipients are for the time they’ve been afforded and the positive impact on their quality of life. If you live in BC you have probably seen Transplant BC’s “Live Life. Pass It On.” campaign. The simple and beautiful message it presents perfectly describes the goal of organ donation. Becoming a registered organ donor is a quick and easy way to pay it forward and ensure that you can pass on the gift of life to another person in the future. Every year thousands of transplants are performed in Canada.
If you are already a registered organ donor join the movement and encourage your friends and family to sign up this month. April is dedicated to the stories of those who have benefited from organ donation. Let’s celebrate donors past and present and encourage new ones!
Please share the #4Eva campaign! – Bria
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“In loving memory of Eva Dien Brine Markvoort March 31, 1984 – March 27, 2010: Our girl Eva … full of love and hope and the colour red … ” (Courtesy of the Vancouver Sun obituary March 27, 2014)
Four years ago, Eva passed away.
As April – Organ Donation Month – is soon upon us, I remember one of her last messages in the film 65_RedRoses, and that was that even though she had chronic lung rejection which would ultimately claim her life, she was so thankful to the donor family who gave her new lungs, and gave her a chance at a few more years at life.
A little update from the #4Eva campaign:
The Friends For Life Foundation in Toronto recently held a screening on the 27th, where director Nimisha Mukerji was present to do a Q&A. Nimisha tells me that the screening was a huge success, and that there was a great turn out!
Eva’s Dad is currently gearing up to ride from Vancouver to Banff, which is a 1200km journey, and he is hoping to raise $65,000 for CF research in June of this year!:
My beautiful daughter died from CF in March 2010 and I am riding in GearUp4CF this year in her memory.
Eva was a fighter and inspiration to all that knew her. In 2008 I rode in GearUp4CF to celebrate her successful recovery from a double lung transplant that allowed Eva to once again live her life to the fullest. Only months after the surgery, she joined the team in Invermere, painting our faces and cheering us on with her pom-poms in her self-appointed role as chief cheerleader.
This year I will be 65 years old on the ride. That is why I am calling this ride 65 for65Roses; partly because of my age, partly because 65 Roses is a malapropism of Cystic Fibrosis, partly because my daughter’s blog was called 65 RedRoses, and also because I hope to reach the very lofty goal of raising $65,000.
Training to ride for 1200 km over multiple mountain passes to Banff will be very difficult; raising these funds will be just as much of a challenge. Here is where I need your help. Please donate to my ride and help contribute to Eva’s legacy to raise critical funds for CF research and awareness.
Please donate to the “65 for 65 Roses” campaign here.
Finally, we are excited to announce a screening of 65_RedRoses at Dalhousie University in Halifax on April 22. Find out more information at our Find a Screening section here.
It’s so exciting to see an increase in interest in community screenings! You can organize one to help spread the campaign. Contact us here to find out more!