T.J. Spotts

Like any parent, Susan and Tony Spotts imagined what their son*s life would be like when he grew up.  They pictured him graduating from high school, going away to college, embarking on a career, meeting a significant other and starting a wonderful new life.

Their dreams for T.J. were becoming a reality.  Susan and Tony attended their son*s graduation from Douglas High School and then watched him pack up the car and move to Las Vegas to study political science at UNLV.

But then in the spring of 2000 a sudden turn of events shattered their dreams for T.J.

T.J. was 21 when diagnosed with a rare disease called rapidly progressive glomular nephritis, and it all began when he couldn’t see well.

“On April 11, I went into our health center down at the university because I had trouble seeing,” T.J. said. “They took my blood pressure, and it was 240/150, which is stroke range. They said, ‘You have to go to the hospital.'”

T.J. spent six days in the Saint Rose Dominican Hospital in Henderson undergoing tests.
“They sent me home with some medication, but they still didn’t know what was wrong,” T.J. said.
T.J. tested normal until the results of a kidney biopsy came in.

“The initial results indicated that about 30 percent of my kidneys had been destroyed and another 30 percent were under attack.  They started me on an intense medical treatment involving steroids and chemotherapy pills, as well as blood tests and any other medical tests the doctor felt were appropriate,” T.J. said.

T.J. was treated for about four weeks and then went home for the summer. He had planned to go to a conference in Colorado, but the day before he left he got a phone call from his nephrologist in Reno.

“He told me the only place I was going was the hospital. My blood panel indicated that my creatinine was at 1.5. So they took me to Washoe Medical Center. I had surgery on May 24 to install an artificial shunt in my chest, a perma-cath to do dialysis through,” T.J. said.

He began dialysis three times a week in Carson City and continued when he returned to school in Las Vegas. In three months he lost 55-60 pounds.

“Dialysis is kind of like getting the transmission fluid cleaned in your car. They take out your fluid, clean it and filter it back in. It takes three and a half hours,” T.J said.

T.J.’s kidney function was down to 5 percent, which calls for automatic hemodialysis.
On June 2, T.J. went in for a second surgery. A fistula was installed in his left arm.

“They tied together a vein and an artery, which created a natural dialysis channel. Eventually they would be using this instead of the perma-cath. It is natural and doesn’t degrade like the perma-cath,” T.J. said.

T.J. worked at getting his fistula fit to use by doing exercises with a tourniquet on his arm.

In September, there was a new development. T.J. ran a high fever and his blood pressure dropped.

“They found the original catheter had gotten infected. They scheduled an emergency surgery because it was tied directly to my veins and heart, so the infection could have gone to my heart. They installed a second catheter in the left side of my chest.”

T.J. went from being healthy to having no kidney function in seven weeks.

The doctors believe that T.J. has had rapidly progressive glomular nephritis since he was a child.

“The doctors don’t know when I got it. They think that when I was younger I had a strep throat infection, and it snuck in when my immune system was low. It stays dormant and attacks in the late teens and early 20s. It was only detectable in the kidney biopsy. It is not detectable until the last stages.”

The disease randomly picks an organ to attack, and in T.J.’s case, it attacked his kidneys. His only option now is a transplant because dialysis is designed to be a short-term treatment.

“A kidney in failure is one of the few organs that can be supplemented by machine. I can lead a semi-normal life, and I don’t feel sick if I do what the doctors tell me. I can do anything I could do before,” T.J. said.

Throughout the many years on dialysis, T.J. has had ongoing health battles.  But he never let these battles stand in his way of living life to the fullest.

T.J. graduated with honors from UNLV in December of 2001.  After graduation, T.J. took the LSAT for entrance to law school and was offered a scholarship to the University of Indiana, Bloomington.

T.J. suffered another set-back in the summer of 2002 when he was hospitalized with a pulmonary embolism in his lung.  A week after being released from the hospital, T.J. boarded a flight to Indiana to continue his education.

T.J. graduated from Indiana Law School in May of 2005.  He sat for the Nevada Bar Exam this past summer.

After waiting for six years, T.J. is now number three on the National Transplant List.  He thought his wait was finally over on Tuesday, September 12 when the transplant center called to tell him that a donor kidney was available.  The excitement was short-lived due to health insurance problems.  The database showed that T.J.*s insurance had not been updated.  Without the current information to verify approval, the transplant was a no-go.

Once again, T.J. did not let this stop him from living his life.  He started a new job with the State the following Monday confident that his second chance at life will come within the next few months.

More stories and articles written about T.J.

UNLV student stricken with rare kidney disease

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