Donor info
To find out how to register as an organ, tissue and eye donor in Wisconsin, visit: donatelifewisconsin.org
MONROE - Spencer Volden, 21, has lived under the threat of an early death for seven years.
That kind of pressure could easily send a person into a bitter retreat from the rest of the world. Not Volden.
It's disarming how unfazed he is discussing his medical conditions - even to a curious stranger like a reporter. Disease has plagued him since doctors diagnosed him at the age of 14 with Alport syndrome, a genetic kidney disorder that occurs in only one in 50,000 people. Earlier this year, he developed lymphoma cancer brought on by the anti-rejection medicine he was taking for a transplanted kidney.
When asked about the tumor under his chin, he responds, "You wanna feel it?"
The tumor feels like a broken walnut underneath his skin. It's been shrinking since he started chemotherapy treatments, and he's hoping it will shrivel up altogether by his last treatment at the end of May.
The tumor isn't the only physical manifestation of his kidney disorder. A bulbous vein the size of a mouse distends the skin on his wrist. This surgically-created fistula is a reminder of the draining hours he spent undergoing dialysis in the months before his most recent kidney transplant.
The fistula, too, he offers up to be felt.
His relaxed attitude is a testament to his resiliency. The way he sees it, he can't let the threat of a shortened lifespan affect how he lives each day.
"Through dialysis, I had some depression. I've been angry at moments. Some things don't really turn out the way I wish," he said. "I just say whatever and keep going."
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Volden, a 2010 Monroe High School graduate who lives with his parents just west of the city, chose to speak out about living with Alport syndrome because he wants to raise awareness about organ donation. Each of us is born with two kidneys but can live with one. Volden has four: two native and two transplants.
His aunt donated the first transplant in July 2009, the summer before Volden's senior year in high school. After that kidney eventually failed, his second transplant came last August from a young man from Marinette named Adam who was killed in a car accident. Adam had signed up to be an organ donor when he was just 18 - the same age Volden was when he received his first transplant.
"I can't express how much it's changed my life. I want people to know that organ donation is something they can always do," Volden said.
Michelle Howe, Volden's aunt, said she never questioned donating one of her kidneys to him.
"I love my nephew," she said. "It really helped him."
Howe, who lives in Portage, underwent lots of bloodwork and urinalysis in the months leading up to the transplant. The actual surgery and recovery were streamlined, however.
"It's almost routine nowadays. They have you up and walking the next day," said Howe, 45. In the long run, living with one kidney has little impact on her body or health. Besides a caution from her doctor against playing contact sports, she said she lives her life as she did before the surgery.
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For Volden, the donated kidneys have meant the difference between exhausting, body-punishing dialysis and living a relatively normal life. Even as he undergoes chemotherapy for his cancer, Volden is doing better now than he has during much of the past seven years.
He missed almost half his senior year of high school because he was too sick, at one point spending a 40-day stretch in the hospital. The next year, he had to drop out of the University of Wisconsin-Green Bay after one semester because his kidney function was declining.
He did manage subsequently to complete a Certified Nursing Assistant program at Blackhawk Technical College. Now that his health is better, he's hoping to return to school in the fall to study phlebotomy. Going into healthcare was a clear choice for him: "I've been around it so much."
His current lifelines as he undergoes cancer treatment are a part-time job at Culver's in Monroe and a large, supportive family.
The owner at Culver's, Della Hathaway, said she didn't even realize the severity of Volden's condition for a long time after he started at the restaurant in February 2011.
"He never complains," she said. She's happy to offer him the flexibility he needs while he undergoes treatment, and later this spring, she's planning to do a percent-of-sales benefit for him at Culver's. "I'm thinking 50 percent, that's what I'd like to do for Spencer. We're also looking into doing some bake sales or raffles."
At home, Volden spends much of his day playing guitar, listening to music, reading and texting with friends. Music is a particularly strong salvation, he said, especially the Red Hot Chili Peppers. It's pulled him out of depression and distracted him from his illness. Every night, he and his 23-year-old brother Austin talk on the phone. Austin has Alport syndrome, too, but hasn't yet developed any kidney problems.
He still struggles with feeling alone sometimes and said he hasn't yet met anyone his own age with a similar medical history.
"There's no one my age who I could relate to who's gone through what I've gone through," he said.
Earlier this year, before he found out about his cancer, Volden got a tattoo on his arm that sums up one of his life philosophies. Drawn by an artist at Black Market Tattoo in Monroe, it's of the all-seeing eye, the eye at the top of the pyramid depicted on the dollar bill.
"To me, it means that God is watching over all of us," Volden said.
"I'm just going to keep going. If something happens, it happens. Quitting isn't an option."
That kind of pressure could easily send a person into a bitter retreat from the rest of the world. Not Volden.
It's disarming how unfazed he is discussing his medical conditions - even to a curious stranger like a reporter. Disease has plagued him since doctors diagnosed him at the age of 14 with Alport syndrome, a genetic kidney disorder that occurs in only one in 50,000 people. Earlier this year, he developed lymphoma cancer brought on by the anti-rejection medicine he was taking for a transplanted kidney.
When asked about the tumor under his chin, he responds, "You wanna feel it?"
The tumor feels like a broken walnut underneath his skin. It's been shrinking since he started chemotherapy treatments, and he's hoping it will shrivel up altogether by his last treatment at the end of May.
The tumor isn't the only physical manifestation of his kidney disorder. A bulbous vein the size of a mouse distends the skin on his wrist. This surgically-created fistula is a reminder of the draining hours he spent undergoing dialysis in the months before his most recent kidney transplant.
The fistula, too, he offers up to be felt.
His relaxed attitude is a testament to his resiliency. The way he sees it, he can't let the threat of a shortened lifespan affect how he lives each day.
"Through dialysis, I had some depression. I've been angry at moments. Some things don't really turn out the way I wish," he said. "I just say whatever and keep going."
---
Volden, a 2010 Monroe High School graduate who lives with his parents just west of the city, chose to speak out about living with Alport syndrome because he wants to raise awareness about organ donation. Each of us is born with two kidneys but can live with one. Volden has four: two native and two transplants.
His aunt donated the first transplant in July 2009, the summer before Volden's senior year in high school. After that kidney eventually failed, his second transplant came last August from a young man from Marinette named Adam who was killed in a car accident. Adam had signed up to be an organ donor when he was just 18 - the same age Volden was when he received his first transplant.
"I can't express how much it's changed my life. I want people to know that organ donation is something they can always do," Volden said.
Michelle Howe, Volden's aunt, said she never questioned donating one of her kidneys to him.
"I love my nephew," she said. "It really helped him."
Howe, who lives in Portage, underwent lots of bloodwork and urinalysis in the months leading up to the transplant. The actual surgery and recovery were streamlined, however.
"It's almost routine nowadays. They have you up and walking the next day," said Howe, 45. In the long run, living with one kidney has little impact on her body or health. Besides a caution from her doctor against playing contact sports, she said she lives her life as she did before the surgery.
---
For Volden, the donated kidneys have meant the difference between exhausting, body-punishing dialysis and living a relatively normal life. Even as he undergoes chemotherapy for his cancer, Volden is doing better now than he has during much of the past seven years.
He missed almost half his senior year of high school because he was too sick, at one point spending a 40-day stretch in the hospital. The next year, he had to drop out of the University of Wisconsin-Green Bay after one semester because his kidney function was declining.
He did manage subsequently to complete a Certified Nursing Assistant program at Blackhawk Technical College. Now that his health is better, he's hoping to return to school in the fall to study phlebotomy. Going into healthcare was a clear choice for him: "I've been around it so much."
His current lifelines as he undergoes cancer treatment are a part-time job at Culver's in Monroe and a large, supportive family.
The owner at Culver's, Della Hathaway, said she didn't even realize the severity of Volden's condition for a long time after he started at the restaurant in February 2011.
"He never complains," she said. She's happy to offer him the flexibility he needs while he undergoes treatment, and later this spring, she's planning to do a percent-of-sales benefit for him at Culver's. "I'm thinking 50 percent, that's what I'd like to do for Spencer. We're also looking into doing some bake sales or raffles."
At home, Volden spends much of his day playing guitar, listening to music, reading and texting with friends. Music is a particularly strong salvation, he said, especially the Red Hot Chili Peppers. It's pulled him out of depression and distracted him from his illness. Every night, he and his 23-year-old brother Austin talk on the phone. Austin has Alport syndrome, too, but hasn't yet developed any kidney problems.
He still struggles with feeling alone sometimes and said he hasn't yet met anyone his own age with a similar medical history.
"There's no one my age who I could relate to who's gone through what I've gone through," he said.
Earlier this year, before he found out about his cancer, Volden got a tattoo on his arm that sums up one of his life philosophies. Drawn by an artist at Black Market Tattoo in Monroe, it's of the all-seeing eye, the eye at the top of the pyramid depicted on the dollar bill.
"To me, it means that God is watching over all of us," Volden said.
"I'm just going to keep going. If something happens, it happens. Quitting isn't an option."