Lessons from a 42 Year Transplant Survivor

My name is Sandi, and I have been living with end stage renal disease since I was 7 years old.  That is 42 years ago.  No clear reason, just a diagnosis that not only turned my world upside down, but the life of my family too.  At the age of 7 you don’t truly understand yet the lifetime of challenges, resilience, and of hope you will need to make it through.   But I stand here not just as a survivor, but as a three-time kidney transplant recipient.  Each transplant is a chapter in my life story.  A story filled with uncertainty, but also overflowing with love, strength, and the profound generosity of others. 

My first kidney transplant came from my mom.   Her love and sacrifice gave me a second chance at life.  But just 4 months later, a serious infection caused me to lose that kidney.  It was devastating, not just physically, but emotionally too.   Still, I kept going, especially with the support and love of my family. 

At age 10, I received my second kidney, this time from a cadaver donor.  Someone I never met, but whose selfless decision to become an organ donor game me more time.  That gift allowed me to live a more normal life.  I finished school, went to college, and graduated.  I was finally able to experience life outside of doctors and dialysis centers. 

But as many of you know, the transplant journey doesn’t follow a straight path.  At age 30, my body rejected my second transplant.  I was back on dialysis for 7 years this time around. 

Those 7 years were some of the hardest of my life.  There were days I felt tired of fighting.  Days I genuinely thought I would never get another kidney transplant.  It was in those moments, the quiet difficult ones, where hope mattered the most.  I kept hope alive, but I didn’t do it alone.  I leaned on my family and friends and the belief, that just maybe, there was another chapter left for me.  That kind of hope is very powerful…. And in 2013 I received a third transplant through the paired exchange program at Mayo Clinic and here I am still doing well today.  

Living with kidney disease for four decades has taught me many things.  It’s taught me patience, gratitude, but above all, it has shown me that hope is real, not just a word.  Hope is something we carry when we are hooked up to a dialysis machine.  It’s what keeps us going through waiting lists, test results, and the countless surgeries. 

But hope doesn’t exist in a vacuum.  I wouldn’t be here today without my family.   Their love, sacrifices, and their unwavering support which has carried me through even the darkest times.  Their belief in me has made it possible to believe in myself. 

I also owe my life to my donors – living and deceased and their families.  And also, to the medical professionals who make miracles happen every day. 

To anyone walking a similar journey or waiting on a transplant – I know it’s hard but hold onto hope.  Your story is still being written.  Believe that brighter days are possible.  Lean on your people.  Let them lift you when you can’t lift yourself.  What I’ve learned is this:  the journey isn’t easy, but hope is powerful.  Even when things seem impossible, never stop believing in the next chance, the next breakthrough, the next miracle.  

My journey has led me here today, to OTS.   I have volunteered to be a mentor with OTS, and it has been a wonderful experience.   I have had the honor to have mentored some of the loveliest people.  So far, I have mentored 5 amazing individuals, and one very special one is here at the OTS Brunch today.   Maria received her kidney transplant 18 months ago at Northwestern, and she is doing extremely well.  Maria, it has been a privilege and an honor to be not only your mentor, but also your friend through this journey. 

So, please remember no matter how long the road, or how heavy the burden, if you hold onto hope, it can carry you farther than you ever imagined!