A Rare Silver Lining
“It is often in the darkest skies that we see the brightest stars.”—Unknown
I am 32 years old and married my best friend in May 2013. After less than a month of being newlyweds, I injured my spine. Our lives completely changed. I had three major spine surgeries (2013, 2014, 2016), and for two years I spent a great amount of time in a wheelchair and bed.
Given the pain I was in and all the procedures and treatments, I didn’t see a light. I didn’t think I’d be able to go on living that way. I was fortunate enough to find a great spine surgeon who gave me a second chance at life. I woke up from surgery and was able to wiggle my toes; feeling had come back in my leg, in which I suffered severe neuropathy. Although things were beginning to look up, I had a long road ahead of me…but it was just the beginning. I was in intense rehabilitation, but I was on my feet learning to live again.
Last year, though, life took another turn. In June 2017, I was hospitalized for severe stomach pain and was diagnosed with SMA Syndrome: a rare condition where my small intestine was compressed between two arteries. I was also diagnosed with Nutcracker Syndrome; that is, my left renal vein was compressed between arteries. I was told both conditions are common in spine patients, along with major weight loss. I had lost a total of 70 pounds with all my spine surgeries, so between atrophy and loss of appetite, my anatomy changed, compressing my major organs. Doctors operated on my SMA in June, and with dietary changes, I was healthier.
As for Nutcracker Syndrome, I had a major surgery this past November, but it failed and it was advised I have my kidney removed. I underwent further testing to determine if I could turn my own bad situation into a positive one by donating my kidney to save someone’s life. I was the first patient at New York Presbyterian Hospital with this condition to request if it would be possible.
On April 5 of this year, I donated my kidney to a 26-year-old woman who had been on the transplant waiting list for seven years. We met the day I was leaving the hospital, and it was life-changing. I am now Nutcracker-free, and she is beginning her new life. We are both recovering well and have developed such a special bond that we call each other kidney sisters.
The transplant happened to take place during organ donation month! We truly feel like we are long lost sisters. We have both been given a second chance at life and have so much gratitude in our hearts. We both dream of traveling once we recover. We hope to raise awareness and hope more people will consider donating after hearing our story.
I belong to many support groups, and by sharing my story, I have inspired five more Nutcracker Syndrome patients to begin the living donor process. Most of us didn’t even know it was an option.
My husband and I celebrated our five-year anniversary in May, during which he surprised with a trip to Disney, a place I’ve dreamt of visiting since I was a little girl. My husband promised that once I was healthy and would be able to handle all the walking, he’d take me—and he did! Although these years have not been easy, they have taught us how precious life really is, and to live each day to the fullest and not take a day for granted. There is always someone out there who is wishing for things you have. We look forward to moving on and making the best of the next hundred years together while helping others and giving them hope.
I am still Nutcracker-free and feel for the first time in a long time that I am free and healthy. I was also able to go on a spiritual retreat in Sedona, hitting another place on my bucket list. I can definitely say I am living up to my dream of traveling and exploring life. I am learning what “healthy” means.
Although I struggle with the chronic pain due to my spine and still do rehabilitation, I am happy to be where I am. My kidney sister is recovering well, and last I heard, she was working full time and looking into grad school. Although we are not in touch as much as we used to be, it’s a great sign that we are both on a journey to self-discovery and healing, leaving the rest in the past while living for the future.
I believe we can turn something negative into something positive if we spread the word. More lives will be changed. Here I am five years later and six surgeries later. I like to call my sixth surgery “the series finale.” It has been a long road, but everything has led me to this moment. I always said I was given a second chance at life after my spine injury and health issues, because I didn’t know if I’d be able to walk or even do simple things I once could. Although I have major restrictions, I am grateful.
I also became an ordained interfaith minister. I am excited to help others along their path of healing and turning their pain into purpose. I help people on a daily basis and try to give them hope that their new start is in sight. Thank you for taking the time to read my story. I hope you will find a little hope wherever you are in your life at this time.