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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.
Tara 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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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