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Tara’s Story

By · April 22, 2014
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Thank you again to Bria for putting together this blog – and thank you to Tara for sharing her story as a person living with CF, double lung organ recipient, also dealing with chronic rejection.
TaraTara was diagnosed with Cystic Fibrosis when she was 14 months old. Around the age of 17 her lungs began to deteriorate as CF started taking its toll. She spent a year and a half in and out of the hospital until receiving her double lung transplant on February 1st, 2012 at age 18. Tara was kind enough to answer some of my questions about her experiences living with Cystic Fibrosis and how her double lung transplant has impacted her life. Tara is currently waiting to re-list due to Chronic BOS rejection. We wish Tara all the best as she waits for her new lungs. If you would like to support Tara and follow her medical journey, visit her Facebook page here

Bria: What was it like growing up with CF? Were there limitations you encountered? If so, how did you face them?

Tara: I was very fortunate to grow up as a very healthy individual with CF. I was able to play sports and go out with friends with few limitations. I had to incorporate treatments into my day which on average took about an hour each, three times a day. I always had to remember to bring enzymes with me wherever I went so that I was able to eat. But for the most part my CF life was easily incorporated into my regular daily activities. It wasn’t until I was in grade 12 and my lungs began failing that I found CF really overtook my days. I was up to doing 6+ hours of treatments daily. I was on oxygen full time. In and out of the hospital for stays. Off and on IV medications. Slowly I went from being the healthiest CF patient in my clinic to the sickest patient in my clinic. CF began taking over my life so I was unable to do much other than focus on my medications and treatments – which isn’t much of a life – so I decided to list for a transplant.

B: If you could tell people one thing about living with and having CF what would it be?

T: I would tell them that CF robs people of many things. It takes away childhood innocence because you learn at a young age that you have to grow up and be mature about managing your treatments, medications and health. CF never takes a day off, so neither can you. It manipulates the way you think, the goals you set for your life and the dreams you create. Suddenly your dream of traveling the world takes a backseat to simply graduating from high school or university. You want to achieve normal life goals that someone without a chronic illness would consider to be a ‘given’ in life but CF starts to shape your goals. But for everything that CF can take from you, it doubles your dedication, desire and motivation to overcome and defeat the disease. You want to live one day longer, to fight and win one more battle, it overpowers the negatives of CF and you are left with an eye opening appreciation of life itself and the drive to live it to the best of your ability. This appreciation for each day is something some people will never realize no matter how long they live. A quote by Oscar Wilde that I recently found sums up this life lesson that many living with CF learn at a young age,  it says “to live is the rarest thing in the world. Most people just exist.” So although CF may make day to day life challenging and difficult at times, it grants us one of the greatest gifts – a love and appreciation of life.

B: How did you feel after you received your transplant? Did it change your perspective on anything?

T: After my transplant I felt like a completely new person – as if I had been given a ‘redo’ on life. I was more energized and excited about everything and anything. I was alive and living was so much easier. My perspective on how I would carry out each day definitely changed immensely after transplant. I’ve learned to try to not dwell on hardships or struggles and to enjoy each day. I’ve started living life in a different way. The smallest things such as a phone call, a nice hot shower or a delicious home-cooked meal make me the happiest. By enjoying these things I find that each day is more exciting and wonderful so I’ve been trying to pass this outlook on to others around me. When you can realize that there is something good about everyday your life becomes richer and that’s when you really begin living.

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The Importance of Organ Donation: A Mother’s Perspective

By · April 19, 2014
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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!

imageI 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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65_Redroses and Exploring Ethics Through Film

By · April 3, 2014
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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!

65_RedRoses blog imageOn 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)

April is Organ Donation Month!

By · April 1, 2014
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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!

AprilOrganDonationApril 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

Remembering Eva

By · March 30, 2014
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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)

EvaBill

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!

Guest blog – “Why I support 65_RedRoses and the #4Eva Campaign”

By · March 17, 2014
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BriaThank you to our wonderful volunteer Bria for sharing this story about why she supports the #4Eva Campaign :) If you’re interested in sharing your story, join us!

I first became aware of Eva’s story when I was in high school. I came across a headline on the Georgia Straight website which read “Tragically, 65_RedRoses’ Eva Markvoort posts a goodbye video”. Although I didn’t know much about her at the time, I barely  made it through two minutes of the video before I started tearing up. I read the article, visited her blog and tried to learn more about her life and what she was going through. Then I read her poetry, watched her documentary and educated myself on Cystic Fibrosis. I realized how fortunate I was to have never personally known anyone who had been affected by Cystic Fibrosis. When I found out that she had passed away I was angry and upset. I had never met Eva, never spoken to her, but her story resonated with me. It is an easy cause to support when you know that Cystic Fibrosis kills people like Eva; beautiful, artistic, talented, loving and courageous people. It hits them in their prime, when they are young and have so much left to learn and experience. Cystic Fibrosis is a culprit, stealing too soon the potential of those suffering from it.

Every time I recommend the 65_RedRoses documentary to a friend or family member, it comes along with a guarantee that they will fall in love with Eva and how she led her life. She has left a legacy that gives support to people living with Cystic Fibrosis. Knowing what she went through, even as an observer from a distance, makes me feel obliged to pass on and continue that legacy in any way that I possibly can. She brought an amazing amount of attention and funding to Cystic Fibrosis. Eva ignited hope for a cure and even though her life was cut short, she dedicated the years she had to making it better for those people that would be in her position in the future. A few months ago I visited her blog again and there was a post that read “Eva would have been 29”. It was unbelievably saddening to come to the realization that there are people all over the world with Cystic Fibrosis, fighting for their lives, who many not live to see twenty-nine.

The most crucial part of CF awareness is a push towards increased organ donation. We all have the chance to improve and extend the lives of others even after our own has ended. You can give someone the capacity to breath again. How incredible is that? In my opinion, it is one of the most effective forms of charity. Someone can live because of you. Think of what Eva accomplished in twenty-five years. Now think of all the people whose lives could be extended through organ donation. All those people would get the chance to continue doing great things, working towards making our world brighter and better. For me personally, it is an easy choice. It is the chance to pass on the ability to live. Like Eva, every year there are thousands of patients waiting for critical organ transplants across Canada. By being an organ donor you can make a difference to not just one person, but to many. For those receiving transplants, it is a second chance at life.

- Bria

If you are in Toronto, please check out “An Evening with Eva”, which is a screening of the film hosted by the Friends For Life Foundation on March 27th, at the Bloor Cinema, 506 Bloor Street West

February is Heart Month!

By · February 4, 2014
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heartmonthFebruary is heart month! Of course our motif for our #4Eva Campaign is the gorgeous heart that Eva painted on her body! Our campaign is all about heart. But sometimes it’s literally the case. We were thrilled when Mark Wilson reached out to us, sending us a picture of himself, wearing the #4Eva heart shirt, as he celebrated his one-year  heart ‘transplantiversary’ last week! Love, love , love to Mark (2.0)  in this journey – and thank you for sharing your picture and anniversary with us.

We are gearing up for our annual #4Eva Campaign for organ donation and cystic fibrosis awareness – which we annually celebrate in April and May. If you give a valentine from our #4Eva collection (art cards, DVDs and of course the heart tees!) our profits will go to this outreach effort in April and May.

Stay tuned for news about what we are planning as well! Share the love! #4Eva! (more…)

65_RedRoses now playing in BC high schools!

By · December 9, 2013
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EvaBC_sidebarBC Transplant has given a big gift to BC Teachers! 65_RedRoses is now playing in BC high schools!

Thanks to our partner BC Transplant, who has purchased the license for the high school educational version of 65_RedRoses for the entire province of British Columbia, the film is now  free for BC high school teachers! The DVD and teacher’s guide is available at every high school library in the province, and teachers who want their own DVD copy with a link to a download of the teachers’ guide can order one online at a nominal cost from distributor & campaign coordinator Hello Cool World. Hello Cool World is also working on developing similar partnerships in other provinces, educators and stakeholders who are interested in helping us get the film to all Canadian high schools contact us at info@helloCoolWorld.com

Our #4Eva Volunteer Coordinator David Ng recently spoke to Maureen Mooney from BC Transplant about using the film as an educational tool, and here’s what she had to say:

HCW: Why is 65_RedRoses a tool for BC Teacher’s to use to teach students about issues around transplant?

BCT: The story of Eva Markvoort’s personal and touching journey of battling cystic fibrosis (CF) – a fatal genetic disease affecting the lungs and digestive system is documented in 65_Red Roses while she waits for a double lung transplant. This incredible film takes an unflinching look into the lives of Eva and her two online friends who are all battling CF. Students will identify with how these friends communicate on line and how the girls have become each other’s lifelines through the Internet, providing unconditional love, support and understanding long after visiting hours are over.

Our greatest hope for this documentary is that when people watch it, they feel compelled to register to be an organ donor. Several studies have suggested the timeliness of discussing organ donation with teenagers as they are attempting to obtain their drivers license. The research demonstrates evidence based practise that adolescent classroom education may increase public support for donation as the teenagers discuss organ donation with their peers and at home. Eva was on the waiting list for a second transplant when she passed away, and while everyone would have wished more years on this earth for her, Eva’s legacy is the love and inspiration she left behind. (more…)

Being CF Nurse Pt 2: Sharon’s Story

By · October 18, 2013
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rose blackTiffany is a nurse and a supporter of the #4Eva Campaign.  She wants to share her story, in hopes that it will inspire more people to get involved with the campaign.

My name is Tiffany Hamilton and I am a RN that had the opportunity to take care of patients with CF.  One patient in particular is a girl name Sharon.  She taught me to live like I was dying.  Her courage and strength inspired me.  She could always make me laugh: she invented a “chicken dance” that we did every night before she went to bed – she was a true character!

Sharon was the first CF patient I ever took care of.  She taught me so much about CF and the importance of organ donation.

The year before she passed, she had to have a lung reduction to breathe easier.  In January 2005, she got the call that they had lungs for her.  She came in to get prepped and to have a chest CT.

Sadly, 20 minutes before they were about to begin, they had to cancel the surgery.  The CT revealed that her heart had shifted to the right side of her chest.  It was too risky.   She was crushed, as were the staff and I.  In March 2005, she came back into the hospital one final time.

That was the last time I got to have a conversation with her and promised to keep fighting for a cure.  I visited her frequently in the ICU.  When it came time to take her off the ventilator, her mother requested them to do it on the unit I worked on because we were family.  Her memorial service and funeral were the hardest for me to do.  Not a day goes by that I don’t think of her.

Because of her, I continue to spread the word about CF and the importance of organ donation.  I will continue to fight the fight for a cure for CF.  Together we will find a cure!  I owe that to Sharon and everyone else with CF!

Tiffany

Being CF Nurse: Why I support the #4Eva Campaign

By · May 26, 2013
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CFnurseTiffanyTiffany is a nurse and a supporter of the #4Eva Campaign.  She wants to share her story, in hopes that it will inspire more people to get involved with the campaign

My name is Tiffany and I’m a nurse that took care of Cystic Fibrosis (CF) patients when I graduated from nursing school.  Because of the patients I took care of, CF is a cause that is very near and dear to my heart. I was very excited when I heard about the #4Eva Campaign, and the work that the team is doing for CF awareness month, however, I think that awareness should be raised all year round.  I hope to one day make that happen!! I think that we can learn from the successes of campaigns like breast cancer campaigns, and hopefully build a campaign for CF awareness that is just as popular!

Having spent many years taking care of CF patients, I have many stories that have touched my heart.  According to statistics, most CF patients live to the age of 36, however, many of them have been living longer.  Ultimately, CF patients will need a double lung transplant – which is why I believe organ donation is a critical part of CF awareness.  If we can keep spreading the word about CF awareness ad organ donation, maybe we can make a difference in 1 patient with CF and add additional years to their life!! (more…)

Whatch the film. Join the movment. #4Eva