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Kelly’s Story by Tiffany

By · May 1, 2015 · Filed in Blog
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My name is Tiffany and I’m a RN that had the privilege to care for adult patients with Cystic Fibrosis.

My CF patients have always had a special place in my heart, and to this day, I continue to fight for a cure for those who can no longer fight and lost their battle with this horrible disease. One of my patients that comes to mind is Kelly. She could always brighten my day. No matter what was going on with her when she was hospitalized, she always kept a positive attitude. Unfortunately, she lost her battle at the young age of 26.

She met the love of her life, the man she would marry. On her wedding day, she didn’t feel 100%, but she was determined to make it a good day. Three days after her wedding she was hospitalized. It was my last week working on that unit. 1 month later, she took a sudden turn for the worse and was in desperate need of a lung transplant. She became top priority for a transplant and within a month, a transplant was available. Sadly, she passed away 2 weeks later. She never got to go on a honeymoon or start her life as a wife.

When I got the call, I was devastated. She had so much going for her. Even though her transplant rejected, it doesn’t keep me from encouraging others to be an organ donor. I’ve seen transplants be successful and not so successful. I know she and her family are so very thankful for the person who was an organ donor and was able to give her a little more time with friends and family. One of my biggest passions in life is to fight for a cure for CF and to encourage people to be an organ donor. I have so much compassion for my CF patients and may work with them again in the future, but for now, I want to fight for those who lost their battle and those who continue with their battle.

Tiffany

Former CF nurse now a ER nurse but will never stop fighting for a cure.  I’m very passionate about CF and organ donation.

Tiffany, former CF nurse

April is for Organ Donation! in Canada 65_RedRoses airs on CBC Newsworld April 26

By · April 22, 2015 · Filed in Blog
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Blog by Bria

As April comes to an end we are reminded of Eva and the transplant campaign that started it all. April is Organ Donation Month and the time of year when we urge you to sign up and become a donor and spread the word to encourage organ and tissue donation awareness.

Eva HeartApril 19th to 25th marks National Organ and Tissue Donation Awareness week. In Canada alone there are over 4,400 people currently waiting for a life-saving organ transplant and more than 1,600 are added to the organ wait list every year. One organ donor has the potential to save up to eight lives.

To honour this week LiveOn.ca started the #48in48 campaign to encourage 48,000 Canadians to register their decision to become an organ donor in 48 hours. Although the campaign fell short of its goal, 7,817 individuals signed up and cemented their decision to save lives. With over 90% of Canadians supporting organ donation we have reached an important crossroads.

An overwhelming percentage of the population support organ and tissue donation and agree that it is a crucial contribution to the lives of those relying on transplants there is still a lack of initiative to register and become an organ donor. If you aren’t already a registered organ donor this is the perfect occasion to become one by signing up online. It’s something quick and easy you can do to literally save the life of another human being. As National Organ Tissue and Donation Awareness Week comes to an end it is important to continue encouraging Canadians to register to become organ donors.

In honour of National Organ and Tissue Donation Awareness week, CBC’s The Passionate Eye will be airing 65_RedRoses. Tune in to watch the doc on CBC News Network on Sunday, April 26, 2015 at 8 PM ET. 

“Redefining the traditional scope of documentary film in an electronic age, 65_RedRoses leaves viewers with a new appreciation of life and the digital world. This personal and touching journey takes an unflinching look into the lives of Eva and her two online friends who are all battling cystic fibrosis (CF).” – CBC: The Passionate Eye

OrganDonationMonthWe hope you are already a registered organ donor but if not please sign up online. If you are support the movement and encourage your family and friends to spread the word and sign up this month. April is a time to reflect upon and celebrate those who have regained their lives and benefited positively from organ and tissue donation. Let’s support donors past and present and work to encourage and educate new ones!

Coming up in May is Cystic Fibrosis Awareness Month and we want to get the blog back up and active. Contact us if you have a story you would like to share or if you have an initiative or event you’d like us to know about.

Please share the #4Eva campaign! – Bria

Great Turnout for our Montreal Screening of 65_RedRoses

By · October 29, 2014 · Filed in Blog
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Eva kiss30065_RedRoses Premiere in Montreal! Blog by Bria

I was proud to host the first screening of 65_RedRoses in Montreal at the McGill campus on Tuesday, October 21! I’m happy to say the event was a success and well attended. All of the funds from the event will go back into the cost of running the screening and helping to support 65_RedRoses.

In light of the recent news of Kina’s death the film becomes more relevant and the message more poignant. Five years after its initial release it is saddening to know that all three girls have passed away. It is a heartbreaking and important reminder about how critical the need for expanded research and funding for both Cystic Fibrosis and organ and tissue donation is, transplant can extend both the quality and length of life for recipients despite not being a permanent solution or cure. Although the ending was not as happy as many would have liked I hope you enjoyed the documentary and the event and were able to extract a positive message. Transplant provides the gift of life to recipients.

Eva’s story is a testament to that and she is just one of the many who have been positively impacted by transplant. Her legacy is one of continuous fortitude, endurance and resilience but transplant made it easier for her to continue doing amazing things and persevere to inspire others.

She was able to live with passion and power thanks to her new lungs and breath a little easier. Despite the saddening outcome, the quality of her live, and of transplant recipients in general, was improved thanks to a selfless act on the part of her donor to register to become and organ and tissue donor.

Here are some photos from the event. Thank you to Alison Gu who came and took photos at the event, all photo credits go to her.

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Montreal Screening October 21!

By · October 20, 2014 · Filed in Blog
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Montreal friends, please spread the word about the screening being organized by our volunteer Bria in Montreal.

Come out to the first screening of the 65_RedRoses documentary at McGill!

EVENT DETAILS

Tuesday, October 21, 2014,8:30-10pm
Location McGill University, The William Shatner University Centre.

Check out the Facebook Event for more details!

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Very saddened by the news of Kina’s passing

By · September 24, 2014 · Filed in Blog
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Kina and EvaWe are deeply saddened to say that Kina passed away Tuesday afternoon. It is hard to believe how much has changed in the five years since we made the film. The time we spent with Kina’s family in Eerie while filming 65_RedRoses was so special for us. Like Eva and Meg, Kina was a strong person – Eva often referred to her as a CF Warrior. She lived life on her own terms and with an open heart. We were moved by her acceptance of people who were different, her love for animals, and the courage she had to share her story.

When we first arrived to film with Kina she had beautiful, long hair, and one day during the shoot she decided to cut it all off. She had promised a charity she would do it, and she wanted to honour that commitment. She opened up her life to our film because she promised Eva she would. If she believed in something she went for it all the way. While they were taken too soon, we are thinking of all three girls right now. We know they are finally free and breathing easy. Our sincere condolences to Kina’s family and countless friends.

Love, love, love.
~ Nimisha & Philip

Bria our fantastic 65_RedRoses outreach volunteer is back in Montreal!

By · September 6, 2014 · Filed in Blog
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As summer is ending it’s time to give a quick update on all the amazing things that have been going on with 65_RedRoses and the #4Eva campaign!

I spent my summer in Uganda volunteering with an NGO which is why our 65_RedRoses Blog has not been updated for a while but I am back now and ready to help share more CF stories. If you or someone you know has been affected by CF and wants to share their story please email me at bria@hellocoolworld.com or contact me via the 65_RedRoses #4Eva Fan Page at https://www.facebook.com/65redrosesfilm.

We also have some exciting volunteer opportunities to announce for any supporters in Montreal. If you are interested in volunteering to help plan a screening of the documentary in Montreal please contact me.

NEWS! 65_RedRoses is now available to be streamed online through the National Film Board of Canada’s Campus Subscription service.

It’s also available in video from us for a one-off screening license. If you are interested in hosting a public screening on your campus check out the “Screenings” section of the 65_RedRoses website for our screening guide, promotion tips and materials.

Finally, we want to send our congratulations to Eva’s father Bill Markvoort who raised over $77,000 for Cystic Fibrosis as a part of the GearUp4CF ride in July which is a nine day 1,200 kilometre bike ride from Vancouver to Banff.

If there is something you would like to see us blog about let us know in the comments below!

Follow us on twitter.

Like our FB page.

– Bria

 

Tara’s Story

By · April 22, 2014 · Filed in Blog
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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 · Filed in Blog
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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 · Filed in Blog
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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 · Filed in Blog
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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

Whatch the film. Join the movment. #4Eva