Dedication: My Husband William
A Silver Lining & True Act of Kindness:
I am 32 years old and married my best friend in May 2013 and 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. The pain I was in and with all the procedures and treatments I didn’t see a light in sight. 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 and feeling had come back in my leg from 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 happy to say I was on my feet learning to live again. A day I didn’t think would come.
Last year though life took another turn. 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 ( aorta and superior mesenteric artery) and I was also diagnosed with Nutcracker Syndrome- My Left renal vein was compressed between arteries. I was told both conditions have been seen in spine patients and 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. They operated on my SMA in June and with diet 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 4/5/18 I donated my kidney to a 26 year old woman who was on the transplant waiting list for 7 years. We met the day I was leaving the hospital and it was life-changing. I am nutcracker free and she is beginning her new life. We are both recovering well and have developed such a special bond and call each other kidney sisters. We both dream to travel once we recover. It just so 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 on our hearts. I belong to support groups and by sharing my story I have inspired 5 more nutcracker syndrome patients to begin the living donor process. Most of us didn’t even know it was an option. I believe we can turn something negative into something positive if we spread the word. More lives will be changed and something unthought of has given my kidney sister a second chance at life and given me my life back. We hope to raise awareness and hope more people will consider donating after hearing our story.
So here I am 5 years later and 6 surgeries later. I like to call my 6th 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 with major restrictions I am grateful to have been given a second chance at life. I always imagined I would help someone else one day and pay it forward and this April that opportunity came. I donated my kidney and gave someone else the gift of life.
I will be married 5 years this May and although they have not been easy they have taught us how precious life really is. To live each day to 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 100 years together while helping others and giving them hope.
“It is often in the darkest skies that we see the brightest stars’”- Unknown
UPDATE: I am now 7 months post-op! I am still nutcracker free and feel for once in a long time I am free and healthy. My husband and I celebrated our 5 year Anniversary in May in which he surprised with a trip to Disney!! A place I’ve dreamt of visiting since I was a little girl. My husband promised once I was healthy and would be able to handle all the walking he’d take me and he did! I was also able to go on a spiritual retreat in Sedona hitting another place on my bucket list. Aruba this Winter to escape the cold! So 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. A place I never thought I’d get to. 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. This past week I celebrated my 33rd Birthday and also became an ordained Interfaith Minister! I am excited to help others along their path of healing and turning their pain into purpose. I have held a few fundraisers for the NKF and raising awareness when I can. I have inspired closed to 10 nutcracker patients to start the process of living donor tests to see if they too can find relief the way I have through donating. Most of us were not aware this was an option and I’m happy I can be a success story. I help people on a daily basis and try to give them hope that their new start is in sight. I am grateful for my second chance and If I had another spare I’d do it again. Thank you for taking the time to read my story and I hope you will find a little hope wherever you are in your life at this time.
Thank you,
Luisa Dong
(Levittown, NY)
