UNLV student stricken with rare kidney disease

UNLV student stricken with rare kidney disease
by Heidi Alder

The Record-Courier
January 6, 2001

    An unexpected event shook the Spotts family of Gardnerville last year.

    T.J. Spotts, 21, was diagnosed with a rare disease called rapidly progressive glomular nephritis on April 20, and it all began when he couldn’t see well.

    Tony and Susan Spotts’ son T.J. graduated from Douglas High School in 1997.  He is attending the University of Nevada, Las Vegas as a senior in political science.

    “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.

    “A kidney in failure in 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.

    However, T.J. is on a strict diet.  He has to watch his potassium, sodium, phosphorus and fluid intake.

    He can only have eight 8-ounce glasses of any kind of fluid a day.  He cannot have dark soda pops, orange juice, fresh potatoes, chocolate, melons and pepperoni.  He must take antacid tablets with every meal and snack.

    “It’s a change of lifestyle,” said T.J., who was used to eating high-salt, high-fat fast food.

    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.

    “It’s life support is what it is,” Susan said.

    The Spotts met with a transplant team at the Washoe Medical Center to begin the process of finding a kidney donor.  The team explained that the donor needs to match T.J.’s genetic markers and blood type.  T.J. is blood type O.

    “We all have six markers, three from our mom and three from our dad.  The best match would be an identical twin and then all six would match.  The next best match would be a close relative, preferably a parent or sibling.  Three or four would match,” T.J. said.  “If there were no matches, then you go on a regional list and wait for a donor.”

    If T.J. did not have a donor, his wait on the donor list would be three to five years.  There are 11,000 kidney-pancreas transplants a year, with 44,000 people on the list who are in need of a donor, T.J. said.

    Susan encourages people who would like to donate organs to be listed with their doctor of draft it with a lawyer.

    Susan has worked very closely with her insurance to find out what transplant centers her insurance will cover.  The Spotts have chosen the San Francisco center because it had the highest success rate of the 10 centers her insurance would approve.

    The Spotts are hoping that Susan will be able to donate one of her kidneys for her son.  The process of determining if she can donate is long and extensive.

    “They check everything,” Susan said.

    The first stage involved blood work, to see if she matched her son.  Then they did an electrocardiogram (EKG), chest x-ray, blood work, 24-hour urine collection and many other routine medical exams.

    Susan must pass all of these tests to move on to the next set of tests.

    If Susan does pass all of the tests, then the family must undergo psychological testing to make sure they are all ready for the operation.  They are hoping that the transplant will take place sometime after March.

    T.J. is optimistic.

    “I have a lot of things going for me.  I am very young and I have no other preexisting medical conditions,” T.J. said.

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