The Importance of Organ Donation: A Mother’s Perspective

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.

Kayla’s new liver was amazing, she gained weight and felt so much healthier. Needless to say, as her late teens came she was making the most of her new found freedom. We had started allowing Kayla to drive by herself to the clinic because we wanted to let her take responsibility for her health. Unfortunately, shortly thereafter Kayla’s lungs started failing. Instead of yearly admittances, she was in the hospital every 6 months, every 3 months, and finally every month. She just wasn’t bouncing back and it was not what the doctors expected. Her admissions became more frequent, and she was scared of what the future held for her. CF is certainly not the same for everyone. We had searched and educated ourselves but we needed people who “got it” and it is hard to make connections because CFer’s are kept isolated from each other.

Eva’s story captivated us. I used to google Cystic Fibrosis a lot to stay updated and one day I came across Eva’s blog. I read and read and read. I was ecstatic that someone from Canada was sharing their story. I encouraged Kayla to read the blog and follow the other girls as well. She could relate to all of their stories; the decisions made, the rebellious episodes, the family support and the routine of everyday life in a hospital. We watched 65_RedRoses when it aired on TV. It was like watching Kayla. We cried watching that IV pole being wheeled down the hallway.

Eva made a difference in our lives and connected with people who were not directly exposed to CF or had never received a transplant. To be able to relate, to know Kayla wasn’t the only young girl going through this, was incredible. To put a face to Cystic Fibrosis made it beautiful. People didn’t understand how sick Kayla was because she looked fine but the hospital became her new home. People didn’t understand the toll so many long admittances took on a person’s life. A big week was when they would allow her to go out for lunch or home for a real shower.

Kayla was assessed for transplant but had to gain weight to be listed. Because her lungs were failing she was burning all of her calories breathing. We as a family had to take this head on. We had to put our lives on hold and concentrate on Kayla. We had to show her that we were there for her every step of the way. Kayla’s blood clotted a lot and she had a port inserted but ended up with a blood clot there as well. She was on pain meds so listing had to be delayed for that as well. She was having some heart issues and 8 months after her port was inserted we came to find that her port was sitting in her heart valve and it had to be taken out. It took a year of meetings, a lot of doctors appointments, admissions, tests, and relocating to have the best care for her. Her longest admission was 49 days.

Trying to balance a house back home and living in a hotel for a year was tough. I call our son “the forgotten one” because he was left to do a lot of things on his own. I give my husband credit for taking care of everything. I sat with Kayla every single day to support her, went with her to every test and met with every doctor. My husband worked, went home on weekends to see our son and tried to balance everything else so that we could worry less. I dove into everything and anything transplant, joined Facebook groups, did news stories to get the word out, and did anything to raise awareness. I thought to myself “if our family is facing our second transplant journey, I need information and support, but how can I reach people outside of the CF and transplant community?”

I decided to create a group for friends and family to help understand what we were going through. Our family needed moral support, especially Kayla. Looking at Eva’s blog taught us a lot. We just wanted to inform people about Cystic Fibrosis and organ donation. We started a Facebook group called “Kayla’s Medical Journey” and now have close to 1800 members. It has been a tremendous help in getting the word out and it is incredible to see support come from people who don’t even know us.

Kayla was finally listed on November 26, 2013. It was a long road to battle! She had to get healthier to be listed and with the amazing team of doctors that were involved we managed to get her healthy enough to list. Kayla was partially in denial that she needed a transplant. She knew a lot of people who had passed away from CF or transplant related complications. It was a mental struggle that no one that young should have to face. I searched for the positivity within the situation to help support her. In December Kayla was asked to be a part of a video geared towards college students to raise awareness about organ donation. Their goal was to get 4000 students to register as organ donors in two weeks, there is now close to 5000 registered. The video brings me to tears every time I see it. She makes me so proud!

At that point in time Kayla was hooked up to oxygen 24/7. She spent most of her time in bed or in the hospital. Doctors were running out of antibiotics to give her since she wasn’t responding or getting better. She attended physiotherapy 3 times a week to keep her muscles moving and retain some strength. The physiotherapy staff were amazing and reminded us that we were not alone. Other families were there watching their loved ones work to breathe. We all “got it.” We all hoped that eventually everyone would get the call.

Seeing those beautiful and strong people struggle to live and breath made me realize how important organ donation is. I know people who have waited for years and people who have only waited days. All of these people are listed, which means every single one of them needs a life saving organ transplant. Their lives are on hold and they wake up every day waiting to get the call but what might be the most exciting day in one persons life, is another families day of mourning. It has made me realize that all of these people, including Kayla, are still fighting to live.

It was frightening to think about how ill she was and it crossed my mind at times that she may not come back from it. Kayla, like many others, may pass away waiting for a transplant. Kayla spent Christmas in the hospital, as well as New Year’s Eve. Last Christmas we were put in contact with Friends For Life, which raises funds for Cancer and Cystic Fibrosis. They provided us with all the fixings for Christmas dinner and some great gifts for Kayla. Kayla and Erick have become great friends as they both have CF and can relate to each other. On February 27th Kayla received her call! We were one of the lucky ones. On February 28th,Kayla was wheeled into surgery for her double lung transplant. She was released 2 weeks post-transplant.

A few months prior to her transplant we had been invited to a screening of 65_RedRoses in Toronto. It was something we were really looking forward to, a night out in Toronto to see Eva inspire on the big screen with other supporters of organ donation and Cystic Fibrosis. Kayla was determined to go. So 4 weeks post-transplant we took off to the event and it was beautifully done. I was in awe of Eva’s wonderful family and it made it even more personal to see her aunts there. I was honored when Friends For Life introduced Kayla. I will never forget the gasps that came when they said “this is proof that organ donation works, she’s 4 weeks post double lung transplant.” I was touched. The whole movie I bawled! Eva our superstar! She helped us when this journey was just beginning and there she was again. Eva was a strong, vibrant girl, who just wanted to relate as well. She wanted to help support others who had to battle too and she created a community.

From my own daughter I have learned strength, perseverance and patience. If all I can do is sit by her side and support her I cannot complain. If you are considering signing up to become a donor please look at my daughter who has been given another chance at life (twice). If it wasn’t for organ donors she would not have graduated high school. On Kayla’s 6 week lungaversary she ran! We walked for two hours and went down to the water and she ran down the dock. She hasn’t run in years! Because of someone’s selfless decision to donate their organs my daughter is alive. We are forever grateful.

We can increase awareness by talking and getting the word out there. There is still a lot of ignorance when it comes to organ donation. People shouldn’t be afraid to talk about it. Education is key, talk about it with family members and friends. In the end it is the choice to save someones life. I’m a different person because of everything we’ve been through. I will always tell our story and do my best to educate people. I have realized that I am capable of anything now. If I can keep it together while going through all of this I can do anything. I’m stronger than I realized, and still have to tell myself that. We did it!

I will cherish every moment with my kids and never take anything for granted. My daughter is now walking without help, showering, she is able to cook dinner, and is planning on going to college and traveling. She can plan her future.  Kayla is still early out of transplant but she is doing remarkably well and life is good. I have encouraged Kayla to not worry about the “what if’s” and to live life and take it all as it comes. She wears an “ask me about my organ transplant” button on her jacket and it’s amazing how many people have approached her. That conversation could change someone’s life. She has learned to be proud of her scars and won’t think twice about showing them to people.

We think of the donor every day. It’s a miraculous gift that we will honor forever. My daughter is alive! Through tragedy came a hero and that is a legacy to leave. We are all truly blessed to have this chance. I hope everyone on the waiting list is able to see this side of it. If you talk to your family and make it known that these are your wishes you could leave this world while extending someone’s life.