My Kidney Donation Story: LJ Dong

My story began in 2013. I had just gotten married and thought I was going to have a family. Then I broke my back and had to have multiple surgeries. I was in a wheelchair for a couple years.

While I was going through spine surgeries, I started having some other health issues, including kidney pain. I had lost 70 pounds and I could not eat—no one could figure out what was wrong. I thought I was going to die.

I begged for more tests, and I finally was diagnosed with superior mesenteric artery syndrome (SMAS), which causes partial or complete blockage of the intestine. I was told I had to go to the hospital to get a feeding tube. When I got to the hospital, they told me I was beyond having a feeding tube—I had to have surgery right away. And they said, Oh, and by the way, do you know you have Nutcracker Syndrome?

I had my first surgery and I was recovering really well from that, but then my kidney pain started kicking in. I went to a couple specialists to explain to me what Nutcracker Syndrome was. Basically, I have a kinked left renal vein. I like to explain it like a garden hose: if you step on the garden hose, no water gets through.

The first surgery was a left renal vein transposition where they basically rerouted the vein. By my first post-op appointment, it was apparent that the problem wasn’t fixed. I was still having issues and my pain was still severe. They told me they could redo the surgery, but I didn’t think I could go through that again, and if it didn’t work the first time, I wasn’t confident it would work the second time.

The other option was a nephrectomy to remove the kidney. The kidney itself was healthy, but the vein leading to it was not. So, I thought, If I have to take the kidney out, how can I give it to someone? When I was in a wheelchair, I thought, If I am able to walk and be healthy again, I am going to pay it forward. This was my chance.

I started calling transplant centers. The first one I contacted denied me immediately. I think they were too worried about all the surgeries I had had to even touch me. Then I called New York Presbyterian and they got me an appointment right away. I went in and spoke with the transplant coordinator, who was amazing. She said the best thing we could do was to meet with the doctor. We did, and he was awesome. They looked back 20 years and no patient with Nutcracker Syndrome had ever donated. I asked what would happen to my kidney if it wasn’t donated. He said it would go in the bin. I just could not accept that.

We went through the living donor testing. All the results came back fine and the doctor said my right kidney was healthy and working great, so they could take out the left one.

Within four weeks I got a surgery date: April 5, 2018. They found a match very quickly. After the surgery, I heard the left kidney was working. I actually got to meet my recipient before I was discharged and it was just amazing. I can’t have children due to all my medical issues but I was still able to give life.

My donation made medical history, and now dozens more people with Nutcracker Syndrome have donated because I shared my story. The more I keep sharing my story, the more people are donating rather than going through the very difficult renal vein transposition surgery.

There are about 6,000 people in the Nutcracker Syndrome support group now, which is so many more than when I joined. A lot of people are learning about how people with this condition can become donors. I have goals for the future. I want to have a registry for Nutcracker people, and a number they can call to be directed to centers that are familiar with Nutcracker Syndrome and will consider them as donors.

One of my recent efforts was competing in the National American Miss pageant in the Mrs. category representing New York.  I won the competition and am now the American Miss National Mrs. for 2024. My platform is organ donation: I call myself the Queen with One Bean. It’s great to have a platform and be able to raise awareness.

I do motivational speaking—any opportunity I get, I share how important this is and that there may be a better option for people with Nutcracker Syndrome. I also talk about how important it is to advocate for yourself. Now I’m just trying to live my best life and raise awareness at the same time.

My motto is turning your pain into power; turning your pain into purpose. I always say that there is a light in the darkness. I was going through something so difficult, and something so beautiful came out of it.

About the Author

LJ is a certified medium as well as an ordained interfaith minister, certified personal trainer, certified sports nutritionist, certified motivational speaker, kidney donor, Reiki practitioner, and author, but her favorite title is “warrior.” Her books, The Spirit of Hope and Think Like a Medium, Act Like a Warrior, are available on Amazon. She starred in The LJ Documentary—The Story of a Warrior Spirit. LJ recently walked in New York Fashion Week and has embarked on her latest venture: modeling and acting. She has already been published in a few magazines. LJ was crowned The National Mrs. American Miss 2024. This summer, LJ will be representing Mrs. Italy (where she was born). She is unstoppable!