Written by Leslie Wyers, mom to three amazing kids, two of which are kidney transplant recipients. Leslie also is a board member for Transplant Families, former chair of the IROC CEW, and former OPTN Patient Affairs Committee member.
One of the best lines I heard when sharing the news that my son will need kidney transplant was from a colleague who said, “ Well, he will have a great college essay topic”! I laughed out loud and then realized that though our lives changed immeasurably in one day the typical rite of passages were still within our reach.
In the fall of 2011, our 8 year old son, Logan, was playing with his much-larger twin brother, Drew, when we learned that Logan’s labs were “off.” We were told to head over to CHOP (Children’s Hospital of Philadelphia) where they would be waiting for us. The next few days while Logan was inpatient consisted of labs, transfusions, a kidney biopsy and then THE MEETING where EVERYTHING changed. We were so fortunate that Logan was being treated by one of the most caring, smart and talented nephrologists, Dr. Sandra Amaral. She was new to CHOP, but luckily not new to the diagnosis that described Logan’s condition. Nephronophthisis is a rare, recessive gene mutation that caused a type of cystic kidney disease that rendered Logan's kidneys useless. He was in End Stage Kidney Disease (ESKD) and needed a transplant as soon as possible.
Life slowly started back up again after the diagnosis. Two things happened simultaneously: our other two children were genetically tested AND I needed to be cleared to donate my O+ kidney to my O- son AS SOON AS POSSIBLE! Eleven weeks later, on November 15, 2011, I was able to give Logan his new kidney which he affectionately named: Sparkey. Only 14 days later, On November 29, 2011 (my husband’s birthday) the genetic testing told us that out that our daughter, Kylie, also had Nephronophthisis and would need a kidney transplant. I prayed to be given two years before her transplant (I'm not sure why I didn’t ask for ten or twenty years?), but a little over two years later, on March 4, 2014, Kylie received her new O+ kidney, from a family friend and HERO named Sherri. Kylie named her new kidney: Sunny.
At first, the diagnosis and all of the accompanying medical issues, had me asking what I did wrong? Why was this happening? But an angel on earth challenged me to think differently. She pointed out that our children were here to serve a higher purpose and with that there was a profound shift. It’s all about perspective!
Logan and Kylie are kidney transplant recipients, but they are also so much more!
Logan is a total sports dude, works as a baseball and equipment manager and is into all of the Philly teams including: the Eagles, Phillies and Sixers. He also worked in the Disney College Program for six months last year. It was truly a full-circle moment because he was a Disney "Make A Wish" kid. For his kidney clinic appointments, he has graduated from CHOP to the adult Hospital University of the Pennsylvania (HUP) across the street. Although he prefers to NOT to discuss his transplant very much, he knows what has to be done to keep Sparkey working. Logan is hilarious, observant, loving and resilient. He earned the name Lionheart when he was an 8 year old transplant recipient and it describes him perfectly to this very day. In fact, his most recent clinic appointment centered around the possibility of getting a tattoo of a lion. Yes, all types of young adult conversations happen whether you have a transplant or not! He loves to hang out with his twin brother and friends, go out to eat, DJing, and watching sporting events. He is an outstanding 21 year old young man with a kidney transplant!
Kylie is a freshman in college, living in a dorm away from home, studying Early Childhood Education and participating in the theater group as part of the technical staff. She loves Broadway, NYC, binge watching TV shows, Disney, traveling, reading, and music - especially going to concerts. She is passionate about spreading awareness about transplantation, but more specifically: living with an invisible condition. Kylie loves to connect with and support others living with transplantation or other medical conditions. Kylie is wise beyond her years, seeing the good in everyone and teaching us how to be better people. Her independence and grit is done with so much grace that we find ourselves in awe of how truly badass she can be while also looking like a Disney princess! She is a remarkable 19 year old young woman living with a kidney transplant.
Our family was forever changed by a double Nephronophthisis diagnosis, but what didn’t change was our family values. We worked very hard to raise children who are resilient, hardworking and have empathy and we are so blessed that all three demonstrate those values. Though their genetics are the same, Logan's and Kylie’s transplant journeys have been very different…and yours will be too. Our kids are on different anti-rejection medications, they respond differently to treatments, and have varying ancillary conditions from their immunosuppression medications. Most importantly, they are very different in how they respond emotionally to their situations. This is a message to all that we cannot assume there is one way to handle transplant, and we have to meet each patient where he or she is on his or her individual journey.
My advice for those taking their first steps on this journey is: Find your tribe. Even if you’re not ready to reach out, know where you can find others facing similar challenges. With social media and the rise of excellent support groups, it is so much better than it was 13 years ago. Know that you are not alone! Reach out to your clinic for support. We are so blessed to have a Transplant Coordinator, Sonya Lopez, who has been a calm and reassuring presence during our most difficult moments. That matters so much! My second piece of advice is: It is okay to ask questions! You know your child best so be his or her advocate and make sure to challenge the status quo. Our transplant community is a small but very mighty group! Also, remember to check on the siblings of your transplanted children and remind them that they don't have to be perfect because their sibling(s) is "sick." Their feelings are valid and the transplant journey affects the entire family. We always say that we are all on this ride together! Lastly, continue to have hope and lean into faith, especially when you feel like you have lost all control!
Advice for families just entering transplant life:
It is okay to ask questions. You know your child best- be their advocate!
Challenge the status quo- our transplant community is small but mighty!
Continue to have hope and lean into faith- especially when you feel you lost all control!
And, if you are wondering, the impact of transplantation on Logan and Kylie's lives was indeed the topic of both of their college essays. It was also the topic of Drew's essay because their transplants also had a huge impact on him as well. Life is funny that way!
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