A New Chance at Life
Douglas grad receives new kidney after seven years

By Jo Rafferty

The Record-Courier
March 28, 2007

T.J. Spotts, 27, graduated from Douglas High School in 1997, attended the University of Nevada, Las Vegas, from 1997 through December 2001, receiving his bachelor's degree in political science, then went on to Indiana University School of Law where in May 2005 he earned his law degree.

Spotts managed to do all this in spite of being on kidney dialysis since mid-2000.

"In April 2000, I woke up one morning and I couldn't see," said Spotts. "It was like a spotlight was shining in my face."

Spotts checked into a hospital in Las Vegas and his blood pressure was extremely high, about 240 over 160. Nurses ran a number of tests before discovering his kidneys were failing.

Spotts spent seven years on the donor waiting list, before receiving a new kidney on March 13. Dialysis three days a week kept him alive and well enough to continue his studies, although not at the level he would have hoped. He also managed to keep his job as a legal researcher at the Nevada Attorney for Injured Workers in Carson City.

"I was one one-thousandth of a point away from graduating at UNLV with the highest honors, magna cum laude," said Spotts. "I did graduate with honors, just not with the highest.

"The best outcome (with dialysis) is you feel 75 percent of normal, but you're tired, you ache, you feel dizzy," said Spotts on March 23, 10 days after his surgery. "There were days when I felt so sick (after treatments), I woke up and couldn't go to work. The dialysis was a temporary solution. The permanent solution is a transplant."

Spotts' medical journey began a year and a half before graduating from UNLV, when he was diagnosed with IgA nephropathy, a kidney disorder caused by deposits of protein within the kidney filters that can eventually lead to renal failure.

Spotts said the doctors thought he had developed the disease from an illness he had as a child. The disorder can take 10-20 years for symptoms to appear, according to the National Institute of Diabetes and Digestive and Kidney Diseases.

"It's kind of a blessing," said Spotts. "The way this defect works, it could have invaded my heart, lungs, liver; not allowing me to live. But, it invaded my kidneys which allowed me to wait for a transplant."

Spotts attended UNLV full-time while on dialysis. After graduation, from December 2001 through August 2002, he said he took "a break" from school, during which he worked full-time as a substitute teacher for the Douglas County School District. In August 2002, two weeks before he was scheduled to leave for the Indiana School of Law in Bloomington, Ind., he developed a pulmonary embolism, a blockage of a pulmonary artery, which carries blood from the heart to the lungs.

"Because you sit for long periods with dialysis, you get blood clots in you legs," said Spotts. "Blood clots can move and end up in your lung."

While in Indiana, Spotts had several instances where he just wanted to give up, and once called his mother to tell her he wanted to go home.

"He was just ready to be done," said his mother, Susan Spotts.

"If you look at the negativity, you can get really depressed really fast," said T.J. "I will not deny, there were a lot of times I'd hit a really bad period where I just wanted to chuck it all."

Susan Spotts said that the first time they had hopes for a kidney transplant was when her cousin died two years ago. The kidney was supposed to be a good match, and they were supposed to get to the California Pacific Medical Center in San Francisco quickly, while her cousin was kept on life support. They got as far as Vallejo when they found out that her cousin's kidneys were not responding.

The next time was when they were told that a donor kidney was available was in September 2006, but T.J. had started his job in June, and had no insurance yet.

"They called us in September, but they couldn't verify his insurance," said Susan. "They rejected us in September because Medicare would pay for the surgery, but not the after care. The insurance kicked in Dec. 1st."

In November, Susan Spotts was trying to stay optimistic.

"They could call in three weeks, they could call in three months," she said. "They have him on the short list now. I'm hoping for Christmas."

Susan called The Record-Courier on March 6.

"The hospital lost his paperwork," she said. "It sat on a social worker's desk for two months."

In the meantime, Spotts was undergoing 12 hours of dialysis a week at a center in Reno and his family decided it was better if he didn't move.

"We kept him in Reno," said Spotts' mother. "The scheduling was better because of (the dialysis center's) hours. They have evening hours."

On March 12, they received another call that a kidney was available, and Susan and T.J. headed to San Francisco again. They got as far as Davis, and got a call from the hospital saying that there was something wrong with the kidney, so they turned around and came home.

Their disappointment didn't last long, however, because the next day they received another call, and that time there were no complications. T.J. received a new kidney that day, which came from a 48-year-old woman. They returned home on March 20.

Now Spotts has insurance through the Public Employees Benefits Program, but expenses have piled up, as well as a new problem. Susan lost her job in February. She had an interview scheduled for March 12 which she rescheduled after the first call from the hospital, then had to miss her second interview on March 13 after the second call.

"I had to cancel my job interviews twice," said Susan Spotts, who has lived in Gardnerville for 30 years with her husband, Tony Spotts, who was a corpsman in the Navy and has worked at the Carson City Post Office for 23 years. "She was so nice. She told me when I get back and things settle down she'll interview me."

T.J. is going to San Francisco in a couple of weeks and says after that the best-case scenario would be returning to work in four weeks, worst-case, six weeks. He has 30 staples in his abdomen and a 6-inch incision. He won't be able to lift or move more than 15 pounds for six months. He used up his last sick day on March 12.

"The up side of that is now I can build up sick time and not use it up going to dialysis," said Spotts.

His office is hoping that he can come back soon.

"I'm the only legal researcher in the office, so they need me back, but it's up to the doctor," he said.

Spotts also looks forward to taking the Nevada state bar exam, which won't be offered again until February 2008. He tried to take the bar the first time in July 2005.

"I had to drop out because I was too sick," he said. "I took the bar once but didn't pass, in July 2006. It is a non-refundable $500 each time.

"That'll come. I won't be able to take the exam this year, because I missed the deadline. Plus, I'll be getting used to the new medication."

For the next six weeks, Spotts will be undergoing lab tests twice a week "because they'll be fine-tuning my medication," he said. After his initial post-op check-up in San Francisco, his appointments should all be local.

Right now, with the medical expenses, rent, car insurance, groceries, utilities, gas and two student loans, which have been temporarily reduced, T.J. is barely making ends meet.

"I make $2,400 a month. My expenses right now are $2,360 a month," said T.J. "We don't even know yet what the anti-rejection drugs are going to cost. It's all very nebulous at the moment. Nobody can tell me because nobody knows."

The insurance wouldn't pay for the first 30-day supply of medications, which came to $1,000, that Susan had to put on her credit card.

"He has to take it for three months," said Susan. "It's $3,000."

The non-profit Transplant Network donated $5,000 to Spotts while he was in school, which "helped significantly," according to Spotts. At his work, he applied for catastrophic leave, allowing fellow employees to donate their sick time to him. Susan has asked her pastor at Carson Valley United Methodist Church to take up a special offering to help them out. She is planning on asking service organizations if they can help and may ask the speech and debate team at Douglas High School, which T.J. used to belong to, to hold a car wash for them.

She moved to Reno to stay with T.J. for eight weeks during his recovery.

"There's an emergency center about 1/2 block away there," said Susan. "After he can get up and make his own meals, I can come home. But he can't do his own laundry for 10-12 weeks, or drive for a while."

The family has opened an account, the T.J. Spotts Assistance Fund, at Bank of America, No. 501001214365.

On the bright side, T.J. ate his first banana and first granola bar he has had in seven years due to dietary restrictions. Before, he was restricted to six or eight glasses of liquid a day, including melted foods, but now he's required to drink a gallon of water a day, plus a half-gallon of other liquids.

His creatin level, a measurement of the toxins in the blood, were once over 10. When released from the hospital they were at 2.2.

"If you're over 10, you're automatically on dialysis. If over 15, it's lethal," said Spotts, who smiled and said he is feeling "much better."

 

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.