From the Desert to the Dialysis Chair
Last updated: November 2023
The words that changed my life forever...
"Sergeant Jones, I’m sorry to tell you this, but you have nephrotic syndrome, which is causing major damage to your kidneys. You cannot stay in Afghanistan and will have to be medically evacuated to Germany tonight."
Initially, I didn't think I had heard the doctor correctly. "I have to leave Afghanistan? What in the world is nephrotic syndrome? How could anything be wrong with my kidneys?" It was 2011, and I was near the middle of my fourth combat tour at Camp Leatherneck in the Helmand Province. As a Combat Camera Videographer, I was there in support of Information Operations. At the time, I believed I was the fittest and healthiest I had ever been. I adhered to a strict, healthy eating regimen, and when I wasn't off base for a mission, I exercised at least twice a day.
However, over the past few weeks, I began noticing swelling in my face, hands, and feet that progressively worsened. I knew it couldn't be dehydration because, with temperatures soaring over 120 degrees Fahrenheit, I was drinking a gallon of water a day. I was finally convinced to seek medical assistance when my feet became so swollen that I had to have someone cut my bootlaces to help me remove them.
The diagnosis gauntlet
Despite being informed that this was a serious issue, I believed I would be treated at Landstuhl Regional Medical Center in Germany (where deployed service members who are ill or injured are sent) and would return to Afghanistan in no time. Instead, after evaluation there, I was sent back to the United States to determine the underlying cause of nephrotic syndrome. I was furious because the last thing I wanted to do as a leader was leave my Marines behind in a combat zone.
I was sent to Walter Reed National Military Medical Center in Bethesda, Maryland, for evaluation. I went through what I affectionately call "the gauntlet" of MRIs, biopsies, ultrasounds, blood draws, urine collections, and the 13 different medications prescribed to slow down the progression of my kidney decline. It took almost two months and multiple rounds of testing to determine that my diagnosis was a rare immune disorder called Membranoproliferative Glomerulonephritis (MPGN) Type 1 Idiopathic. It is a disease that affects the glomeruli, or filters, of the kidneys. It is unknown what may have caused it.
The journey ahead
It truly felt like I had been removed from one combat zone to be placed in another—except this one I could never leave. Over these past 12 years, I have navigated in-center hemodialysis, peritoneal dialysis, PTSD (from past deployments), depression, anxiety, and enough hospital visits that I started calling the 4th Ward at Walter Reed "Cheers" because everyone there knew my name.
But I also gained many benefits when I finally accepted my fate. I educated myself as much as I could about my diagnosis and CKD. I learned to advocate for myself and partner with my medical team in my healthcare. I found a living donor for my first kidney transplant in 2015 and one for the kidney paired exchange program for the second, but I received a deceased donor kidney in 2021. The living donor went on to donate to a fellow veteran.
Although I am no longer a leader of Marines, I have been able to lead in the kidney advocacy space, which is a great honor. Most importantly, I learned that it is okay to ask for and receive help from others—something that I think I would have never been comfortable doing if this hadn't happened to me. As of this writing, I am feeling pretty good physically, but I rely heavily on my support system and practices for my mental health. There are days when I still grieve what I lost and don't know why I have this illness, but at the same time, what I went through is what created the person I am today, and I am so grateful for that.
This or That
In addition to chronic kidney disease, do you also live with diabetes?
Do you have chronic kidney disease without any symptoms?