Dismissed, Delayed, and Dying: My Nutcracker Syndrome Story

It took 18 months for my diagnosis. It started with fainting at work, I was very confused and concerned because I had never fainted before. No urinary symptoms at this time. Finally, I went to the Dr a month later. I had begged him to run my urine, he didn’t even think of it himself. Results came back with 100,000 colonies of 3 different bacteria’s each. Proteus Mirabilis, E. Coli, and Klebsiella Pneumoniae. He prescribed 3 days of Bactrim. That’s it! From that point forward, it was a downward spiral. Hospitals multiple times a week, every medical professional neglecting me, calling me a drug seeker, etc. After the fifth “UTI” it turned into sepsis, and abscesses appeared on my left kidney. This was when my first PICC line was placed. IV antibiotics for almost a year. Ertapenem, Avycaz, etc. Infectious Disease infusions every day of the week. I couldn’t work anymore. I kept declining. Lost 30 pounds. Vomited for hours each day. Blood and debris in my urine, then no urination at all, had to have intermittent catheterizations every 4 hours. I started vomiting blood. 43 CT scans found NOTHING. Making the doctors believe me even less.

Finally, one doctor, a year in, took the time. It was a 15 day hospital admission and he finally ordered a venogram/urogram. I have a 100% occluded renal vein, anterior nutcracker syndrome that had been neglected so long, it caused kidney failure and an active blood clot covering 3/4 of the renal vein into the inferior vena cava. They increased antibiotics and SENT ME HOME. With a dead kidney rotting inside of me. Less than two weeks later, I was rushed to the largest hospital in my state. UC Health Anschutz. I was admitted within the hour. They stopped antibiotics and wanted to watch and wait to see what my body would do. All my symptoms continued and worsened. After a 31 day stay, they had rushed me to the operating room with the world renowned robotic transplant team that had experience with Nutcracker. The Director had completed mine since it was a complicated case. Since my kidney was at 11% function, there was no way to save it. It was a 7 hour surgery and had some complications with my vitals. The next morning, one of my surgeons came to my room and showed me what my kidney looked like. It was necrotic, black. Scarred from top to bottom. He said I would have been dead within 3 days if they hadn’t taken action.

I was able to urinate more than 1000cc’s by myself, beautiful pee. I have spent hours curled up in agony, my body wracked with pain so intense that it has left me screaming. I have been forced to lie still as needles were driven into my veins, as doctors searched my body for answers they could not find. I have felt the cold steel of surgical instruments cut into me, carving away the pieces of myself that my illness had already claimed. But their failure didn’t stop at my body; they turned my own mind against me. They made me question my pain, my instincts, my own reality. I was told it was anxiety, that I was overreacting, that it wasn’t as bad as I claimed. And when the truth could no longer be ignored, when my body bore the undeniable proof of their negligence, they spoke of my kidney’s loss like it was inevitable, as if I hadn’t spent months screaming for someone to listen.

Do you know what it’s like to wake up and realize that not only have you lost a part of yourself, but that it could have been prevented? To grieve something that was stolen from you while the people responsible look at you with empty apologies? I do. And I carry that betrayal with me every single day. The truth is, my illness has stolen everything from me: my health, my freedom, my future. I am a prisoner in a body that will never heal, trapped in a cycle of pain that will never end. The doctors tell me I am “stable,” as if that means anything. As if survival is enough. It is not. Because this is not living. This is enduring. my suffering, and the suffering of so many others, deserves to be acknowledged. Too many of us are swallowed whole by a system that sees us as numbers, as cases, as problems to manage rather than lives to save. We vanish into hospital rooms, into waiting lists, into endless cycles of pain and dismissal.