Last month, one of our beloved Ambassadors, Alyssa LaRosa, passed away. She was stylish, thoughtful and had a social media presence that was unparalleled. Every chance she could, she was promoting the mission of organ donation and encouraging/educating others to become registered donors. She was a registered donor, then became a tissue and cornea donor at her passing. She thought of it as a way to pay it forward. Alyssa's brother, Tré, wanted to share his thoughts on his sister and organ donation for Donate Life Month. April is National Organ Donation Month, a trend started by Donate Life America and its partners in 2003. The goal of the month is to encourage Americans to become organ donors and to spread awareness about organ donation and, in their own words, “celebrate those that have saved lives through the gift of donation.” I’ve become passionate about organ donation because of my sister’s story. My sister Alyssa was an ambassador for Donate Life and the Cystic Fibrosis Foundation and helped to raise thousands of dollars through fundraising and online advocacy. My sister Alyssa and I both have cystic fibrosis. If you’re unfamiliar, cystic fibrosis is a genetic disease that causes excessively thick mucus that affects many organs, but most significantly, destroys the lungs through severe infection and inflammation. Due to this damage, progressive lung disease means that a lot of people with CF may eventually need double lung transplants. But I’d be remiss if I didn’t mention that due to the thick mucus, inflammation, and immense amounts of antibiotics and other drugs throughout our lifetimes, many CF patients can also need pancreatic, liver, kidney, and even heart transplants. Life with CF means we’re at risk of most of our major organs failing us. In 2013, my sister’s lungs were failing: severe infection was ravaging her lungs, scar tissue and inflammation hampering her ability to breathe and metabolize oxygen. In May of 2013, she was listed for a double lung transplant. She received the call just five days later and received her first set of lungs on May 21, 2013. My sister’s story is an unfortunate one, but not actually that unusual. Her first set of lungs went into chronic rejection just short of 3 years later, leading her to need another transplant by June of 2016. The heartbreaking reality is that Alyssa’s second set of lungs went into chronic rejection just over a year later, in July 2016. She recently passed on March 12, 2018 not even a full five years after her first transplant. And while this may not seem like the uplifting testament for organ donation at the superficial perspective, I’m here to say it in fact is. I was 18 when Alyssa’s lungs were failing in 2013. I was a college freshman, naïve to the complexities of life, even after dealing with a chronic disease for 18 years. I was close with my sister, but she was still just my “big sister,” hardly somebody I realized was a role model, [...]
It's been awhile since we've posted, but this letter from one of our wonderful Donate Life Ambassadors celebrating their donor is too good not to share on this holiday celebrating love. Dear Valentine in Heaven, I look at this picture and see silly handshakes, goofy dance moves, a shared love of Rocky and cheese curls, and inside jokes that I will never understand. But, I also see a side to each of them that wouldn't exist without the other. I see love, a father daughter bond, and complete adoration. Mostly, though, I see a special relationship that wouldn't exist without you, our angel in heaven. There are so many questions, so many things I want to know about you. Every day I hope and I pray that you are watching the memories being made in our family, and the life that you've given so that my husband and father of our two children can not only be here with us, but that he's been freed of a life dominated by kidney disease and diabetes. I also want to know, who have you left behind? A wife? A little girl? A young boy? Because the truth is, at one time, I thought I was going to be left behind. You saved my husband from a life of kidney disease and diabetes... one that eventually would have ended his life prematurely. But, you have also saved me from being left behind. Admitting that makes me feel incredibly selfish, because surely you have left loved ones behind, and that just isn't fair. Why does my family get to move forward in joy, and yours is left to grieve an irreplaceable loss? These opposing emotions have left my heart conflicted ever since October 11, 2014, the day you passed and my family started to live again. If God ever gives me the opportunity, I want to hug those that you have left behind. I want to tell them how grateful I am for the role they played in your decision to be an organ donor. I want them to know that you have a legacy, and it lives on in my family. It inspires and motivates us to never stop sharing our story so that others can know the significance of organ donation. Valentine in heaven, are you in this picture? Did you dance with my daughter and my husband on their date night? Do you laugh at their silly inside jokes? Do you ride along for Sunday slushies? Do you pass lacrosse with my husband and our son? Do you sit with us and cheer him on at lacrosse games? Do you go on family walks with us? Did you sit with me in the waiting room during the 6 hour surgery? Or were you with our son as he tested for his black belt while his father was receiving your precious organs? Were you there when he woke up? Because he swears he could see someone at the foot of his hospital [...]
Sorry for the reminder, but it's almost holiday season in my world. I can’t even fathom how that’s happened so quickly! 61 days until Halloween (if you needed another reminder of how quick the year is going ) We had a wonderful picnic in Lexington at Jacobson Park last week where Ambassadors experienced a whole lot of love and friendship. Here’s a Facebook post from a recipient family on how special it was. Tonight we attended a picnic surrounded by fellow organ recipients and their loved ones. I cannot begin to describe how... Posted by A Match For Ryan on Thursday, August 24, 2017 Our Hospital Development department hosts Champion Trainings around the state to train nurses on the process and other things surrounding donation. They let me speak, I probably went over time, BUT I enjoyed it AND I registered 5 nurses in the room. One of the ladies in this picture is a recipient wife and appreciated the insight the training had to offer! On August 12th, Monica (heart recipient) along with Karen (bone marrow donor) sweated in parts they never even knew they had at an event called Unity Jam. Monica's so cool and smart that she took a Donate Life scarf and made it a great head piece. Together they signed up 30 people in total for both registries! The event as a whole gave out over 1,000 free backpacks to JCPS students! 5 of those were from me, thanks to KODA's Social Responsibility Committee, generous coworkers, sorority sisters and friends! I also want to give a huge shout out to everyone that participated in the Kentucky State Fair! These volunteers (ambassadors, circuit court clerks, families, etc.) were out there for 11 (ELEVEN!) days spreading the word about the mission. We also had a group in Hopkinsville aka Eclipseville raising money for the 2018 Transplant Games. Their goal is to send Team Kentucky to Utah at no cost to the recipient or donor families that participate. The rain drenched them during set up. Dedication isn’t even a good word to describe all of these wonderful advocates! Here’s a few other things heading our way (much quicker than I anticipated!) If you want to learn more about the mission or just want to spend some time with the cool kids (Community Outreach) come out to Regional Trainings. We're in 4 locations across the state starting in October!Lastly, Happy Labor Day! Don’t eat too much barbecue and enjoy your loved ones’ company! Also stay cool and be a registered donor
I’m going to die… One day, hopefully not anytime soon. When I do, I hope I have the opportunity to be an organ, eye and tissue donor. This is exactly what I’ve been telling people when they ask me about my job. Now that I’ve gotten you to read this far, let me introduce myself. My name is Crysta and I work for Kentucky Organ Donor Affiliates (KODA) as a Community Educator. The past 6 months have been nothing short of amazing. Every single day is absolutely eye opening. I knew what I was getting into, but it’s actually so much more than I could have ever imagined. I shed happy tears just about every day at work, and I've completely accepted the fact that I'm now a crier (and my mother made over). My third day on the job, a coworker took me to lunch. There we met a double lung recipient and her husband. They paid for our lunch without asking or hesitating. They both thanked my coworker for all she has done for the mission and myself for what I will do. Her transplant allowed her to see her daughter turn into a mother; she now has 5 grandchildren. It was that moment that I knew I would be forever changed by this selfless mission. My life isn’t the only one that has changed, either! My family and friends have latched onto the mission as well, but it definitely didn’t happen overnight. My mom is considering being a living donor to a complete stranger and my best friend has basically become a poster child for the mission; before I started, neither were registered donors. Beyond that, I’ve attended so many great events and am looking forward to many more such as Regional Trainings, Clerks Colleges, Gift of Life 5K, Sista Strut and the list goes on. I encourage everyone to see what all these events are about and consider joining us! I'm so thankful for the people surrounding me, especially those that gave the Gift of Life as well as their families. The title of this blog is in honor of them. Donor families and recipients remind all of us at KODA and TFL that we live a gifted life. This website was a HUGE undertaking and I want to thank everyone who helped get it off the ground. Special shout out to Jennifer Griffin at Go Fetch Marketing for putting up with me for almost 6 months :) Stay tuned to this blog for updates, more stories, videos and whatever else we can think of adding!