Click photo to enlarge Internationally renowned saxophonist, Dayna Stephens is photographed at his grandmother's home in Rodeo, Calif. on Tuesday, April 3, 2012. He is holding a vintage flute that once belonged to his grandfather and sits in front of a Hammond B3 organ that belonged to his father. Stephens is a familiar face in the east and west coast jazz scene. He currently suffers from a rare kidney disease that has him urgently waiting for a kidney transplant. His friends in the jazz world have been been holding a national fund raising campaign to help him pay for his medical expenses. (Gary Reyes/ Staff)  
Several times a week, Dayna Stephens drives his van from his New Jersey apartment to New York City, navigating traffic on the George Washington Bridge -- and eyeing the dialysis bag hanging from a hook above his head: "People stare sometimes," he says. "It is what it is.
"I'd be dead in two weeks without dialysis."
At 33, the East Bay native already ranks among the best jazz saxophonists in the nation. But he's also on another list: He's one of approximately 90,000 Americans awaiting a new kidney.
Stephens added his name to the transplant list 2?1/2 years ago and has undergone dialysis ever since, a worry as only about half of dialysis patients survive more than three years. Unbowed by this sword
of Damocles, he keeps making albums (his new one is brightly titled "Today Is Tomorrow"), keeps gigging (this month in San Francisco and Berkeley) and keeps astonishing his friends (some of whom have launched an online fundraising campaign on his behalf).
"In October, Dayna played in my band at the Village Vanguard," says legendary pianist Kenny Barron, who has known Stephens since the mid-1990s. "He had just gotten out of the hospital -- and he was perfect, all week. I could not tell any difference. He was just Dayna: fiery, passionate and intelligent. I don't know how he does it."
The fundraising effort -- http://helpdaynastephens.org -- is to assist with Stephens' future medical
expenses. Anti-rejection medications are likely to cost about $4,000 per month if he receives a new kidney, and social workers have told him to expect a sharp reduction in his health plans' coverage at some point after a transplant. Already, finances are "rough," says Stephens, who like many musicians does not have private health insurance.
Stephens suffers from Focal Segmental Glomerulosclerosis, otherwise known as FSGS, a rare disease that shuts down the kidneys' ability to filter the
body's fluids. About five times as common among African-Americans as the rest of the U.S. population, by some estimates, it causes swelling, weight gain and high blood pressure, and Stephens first was diagnosed when he was 19. Medication and diet kept the disease at bay for about a decade, until 2009, when doctors prescribed dialysis. At first, Stephens underwent hemodialysis at clinics, hooked up to blood-cleansing machines for hours, several days a week. It left him exhausted; playing music became difficult, an unacceptable situation.
So he switched to peritoneal dialysis, a self-administered form: "I wake up hooked to the machine," he says, describing the minutiae of his days. "And I usually have about one more cycle to go, another hour or so. Then if I've got a rehearsal or a gig, I'll make some food and roll to the city with my bag for the day; doing the dialysis in the car is sort of like killing two birds with one stone."
The first year of dialysis was "really tough, psychologically," says Stephens, whose blood type is B positive. "And there are definitely times when I get fed up, because it's a monotonous and time-consuming process. But I've learned to preoccupy my mind; I'm a talk-radio junkie. And honestly, I'm a thousand times happier than I was. I accept what I have to do in order to be alive. There are a lot more people on the transplant list who die without getting a kidney. So I really am happy to be here and to be able to do what I want to do, to play music."
Bay Area connections
Stephens grew up all over the East Bay: Richmond, Dublin, Alameda, Rodeo and Oakland, at times with both parents, at times with his father alone, at times with his grandmother. His grandfather Elbert Bullock played the tenor saxophone. But it was Dayna's dad, Rodney Stephens, who got him into music: "He would make these mix tapes, from Benny Goodman to Luther Vandross and Count Basie, all on one tape."
In 1991, when he was 12, he picked up the tenor sax for the first time, renting one from Wells Middle School in Dublin: "That's when it really hit, smashed me in the face, the music. I'll never forget the first day, bringing the instrument home from school and just holding it. I remember walking home and a car driving by and feeling the horn actually vibrating through the case."
One saxophone teacher, Dann Zinn, urged him to treat daily practice sessions as if he were an athlete training for the Olympics. Stephens did that, while taking advantage of jazz programs at UC Berkeley, the Golden Gate Library in Oakland and the Stanford Jazz Workshop, where he studied with pianist Barron. At Berkeley High School, he played in the school's big band -- great players like saxophonist Joshua Redman had preceded him in it -- and by the time of his 1997 graduation, he was starting to gig professionally, with the likes of pianist Ed Kelly and trumpeter Khalil Shaheed, local legends.
A bright future
He won a full scholarship to the Berklee College of Music in Boston, where he arrived in 1998, literally stepping off the plane to receive a phone call: "My mom said, 'You've got to see a nephrologist, immediately.' " Lab tests had shown excessive levels of protein in his urine, and Stephens, who felt fine, found himself alone in a Boston hospital, where a kidney biopsy diagnosed FSGS.
Stephens excelled during his four years at Berklee, but life changed. He had bouts of depression. He juggled medications. He went vegan and continued his music studies at the Thelonious Monk Institute, the nation's most exclusive jazz graduate studies program, then based in Boston. There he studied with his heroes: Barron, trumpeter Terence Blanchard, saxophonist Wayne Shorter and pianist Herbie Hancock, who went on the road with Stephens and others in the program.
He even performed with Stevie Wonder and Carlos Santana. Feeling strong in the spring of 2009, he took daily miles-long bicycle rides with friends, but around this time, suddenly, his energy level began "dropping like a rock," he says. "I didn't know what was happening, and I was a real mess, just getting winded walking up a few stairs. I remember teaching and having these terrible cramps; I mean, name a muscle."
In need of a kidney
He began dialysis and got on the wait lists for a new kidney in California and New Jersey. He may wait years more, he knows. He deals with nausea and struggles with sleep but continues to gig; he even flew in February to Alaska with his dialysis gear, to perform at a jazz festival there. It was "awesome," he says, and he feels his playing has grown more considered, more mature.
"He's superman, plain and simple," says pianist Taylor Eigsti, among the top players in New York and one of Stephens' best friends since they met as kids in the Bay Area.
"He just loves music so much; he would go to the ends of the Earth to play music," Eigsti says. "He's not deterred by anything, dragging those dialysis bags to Alaska. I can't imagine going through all that stuff. But he doesn't wear that stuff on his sleeve. He wears his positivity on his sleeve. That's Dayna; there's a strength within his quiet that just draws people in. It's captivating, what Dayna does."
Contact Richard Scheinin at 408-920-5069.
Full name: Primary Focal Segmental Glomerulosclerosis
Has no known cause
Triggers progressive scarring of kidney tissue, leading to kidney failure
Causes more than 2 percent of kidney-failure cases in the U.S.
Is the second leading cause of kidney failure in children
Afflicts more than 10,000 Americans, who are on dialysis or have had kidney transplants
Upset the careers of retired basketball players Alonzo Mourning and Sean Elliott
Afflicts five times as many African-Americans as others, NephCure Foundation says
Can show symptoms, including high blood pressure, excessive protein in the urine, swelling around the eyes, feet and hands
Is treated with steroids and other medications, diet and exercise; can go into remission
About 1,000 FSGS patients receive kidney transplants each year; recurs in up to one-third of these patients
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