Sister's Sacrifice : A new life nears

    Fear and hope in days before transplant

    By Alice Hohl[0]

    Staff writer


     Part Two : Occasional series chronicling a living organ
transplant



    If all goes well, Jo Ann Villa-nueva will endure one more dialysis
session.

    And less than a week of the "cardboard diet" -- low-salt, low-fluid,
no dairy.

    And only one more four-hour block sitting in a chair hooked to a
machine that cleans her blood.

    Jo Ann expects to receive a kidney from her sister Tuesday.

    For about 10 months, the Oak Forest teacher's aide has done what some
people -- including her own mother -- must endure for years: sitting for
hours at a time hooked to a blood-filtering machine.

    Jo Ann Villanueva and many members of her family suffer from
polycystic kidney disease, a hereditary disorder that often results in
kidney failure. Often, patients face lifelong dialysis if they can't get a
transplant.

    The waiting list for a transplant from a cadaver is four years.
Despite the risk to her sister, Jo Ann decided to accept her sister's
kidney.

    Suzanne Ruff of Minnesota wants to be a kidney donor, but she also
worries about whether her two daughters might be diagnosed with PKD and
need a donor kidney someday.

    The Daily Southtown is following the family through this journey.

    'Your life is controlled by dialysis'

    Patients who undergo dialysis three times a week sacrifice more than
the 12 hours stuck in a recliner chair. Traveling, even for a long
weekend, is either out of the question or involves trying to schedule time
at a crowded dialysis center elsewhere.

    Jo Ann said dialysis patients have scheduled time slots they stick to
each week. It's difficult to switch or request a different time slot, even
in an emergency. The schedule must be adhered to because going too long
without filtering the blood strains the body.

    "You just don't have the option of dropping everything and going,"
she said. "Your life is controlled by dialysis.

    "When my father-in-law died, my husband's family and I were sitting
there making the arrangements. They were looking at me and asking, 'When
is a good time for you?' because I have dialysis.

    "You can't even bury someone on the day you want to because you have
dialysis."

    Staying alive

    Still, Jo Ann is grateful that technology can compensate for her sick
kidneys.

    "It's a wonderful way to keep people alive," she said. "I'm grateful
for it. I know I would be dead if it weren't for this machine."

    Dialysis centers are crowded, and new ones are constantly opened to
keep up with the demand. Decades ago, though, dialysis centers didn't have
nearly enough machines for everyone who needed their blood filtered.

    Suzanne said their aunt died young of kidney disease for this very
reason.

    "She was a Roman Catholic nun we called 'Sister Mike,' " Suzanne
said.

    Sister Michael Mary Dwyer was assigned to travel among various
schools in the Midwest.

    "She wasn't your typical pious nun," Suzanne said. "She was fun and
happy, loved to swim and loved John Wayne movies.

    "She called our mom 'Bubbles,' and we all loved her."

    Sister Mike was in her 30s when she developed PKD.

    "When the disease advanced, in the early 1960s, there were not enough
dialysis machines for the patients who needed them," Suzanne said.

    "My aunt, Sister Mike, gave up her spot on the waiting list to allow
'a man with a family' to have her place on dialysis," she said. "I cannot
imagine the courage it took to make that decision."

    Sister Mike died in 1966 of kidney failure. She was 46.

    Diet and toxins

    People with working kidneys can eat almost anything. They can drink a
lot or a little. The kidneys keep levels of different minerals in check,
filter toxins and keep the blood volume at a steady level by filtering
extra water into the urine.

    For those with faltering kidneys, a careful balance must be
maintained to keep the body working normally.

    Too much liquid in the blood causes irregular blood pressure.

    Too much phosphorus -- usually a good thing for the bones -- can
leach calcium from teeth and bones.

    Too much potassium -- another healthy mineral -- can damage muscles,
including the heart.

    "One thing people don't understand is that when your kidneys fail, if
it only affected your kidneys, it would be easy to take care of," said
Nancy Lepaim, the manager of patient education at the National Kidney
Foundation in Chicago.

    "Your kidneys are responsible for protecting your body's internal
environment."

    Jo Ann says sticking to a very restrictive diet is difficult, but the
alternative would stress her body and cause unpleasant side effects.
Already, Jo Ann must take medicine that sickens her because the phosphorus
level in her blood is too high.

    "I don't have that much trouble with dialysis because I try to follow
the guidelines, but it's hard," she said.

    Fluids consumed by dialysis patients add weight and blood volume
because they are rarely able to urinate.

    If a dialysis patient drinks too much between sessions, the dialysis
machine must remove an extreme amount of liquid from the blood, causing
painful cramps.

    Jo Ann said she adheres to the limitations, drinking just 8 ounces of
fluid per day, including soup, beverages, ice cream, Jello, syrup or
gravy.

    She can have a few extra ounces because her kidneys still have some
function. She's able to urinate once a day.

    Jo Ann's favorite foods, pizza and chocolate, are off-limits. The
cheese, like other dairy, and the chocolate contain too much phosphorus.

    She can have sugary sweets, but avoids them because she is prone to
tooth decay because the calcium and phosphorus in her body isn't always in
balance.

    "If you eat cardboard, then you're OK on this diet," she said,
smiling.

    With Jo Ann, there is always a bright side to every aggravation, and
every grimace turns into a grin. Jo Ann said she is lucky compared to many
of the people at her dialysis center.

    "Some people at dialysis, they're dragging on Monday -- they're ready
for dialysis," she said. "Some can't drive themselves home because they're
so weak."

    But Jo Ann said she doesn't feel much different after her longest
stretch without dialysis, Friday to Monday, and she feels OK when she
finishes the treatment.

    She just wishes she didn't finish after dark, faced with "Closed"
signs in half the businesses she needs to visit to finish her errands.

    "I don't have any nights home," she said. "That's what I miss the
most. I work all day, I leave there, I go directly to dialysis and sit
there for four hours, and I go home and go to bed.

    "I find I just can't do everything."

    Monday, Wednesday and Friday are dialysis nights. Tuesday and
Thursday nights Jo Ann teaches English to the parents of her students, who
are English-language learners at the high school.

    "A lot of people on dialysis don't work, but I have to work because I
carry the insurance for myself and my family," she said.

    Close companions

    Jo Ann could have elected for her husband to operate a dialysis
machine for her in their home, but she chose her thrice-weekly journey to
the Renal Care Group dialysis center in Orland Park on 159th Street.

    "We all decided that we live with the disease in my life, and we
didn't want it to come home."

    And so Jo Ann became part of the Monday-Wednesday-Friday afternoon
crowd at the center. The group passes around favorite movies on DVD, which
they play during dialysis. They exchange books and conversation.

    Jo Ann packs an extra set of headphones in her bag for anyone who
forgets theirs. Dialysis patients watch their own television and can
select their own program or movie, but they can only hear the sound
through headphones.

    Also in her bag is a giant down-filled blanket.

    "You get very cold when you're on the machine," Jo Ann said, because
the blood leaves the body for treatment.

    She packs a small drink of water and a few salt-free crackers to
nibble on during the procedure.

    "These are basically bite-sized pieces of cardboard," Jo Ann cracks,
as she counts them carefully and wraps them in plastic.

    Most dialysis patients have minor arm surgery to create strong,
accessible veins and arteries for the dialysis needles inserted three
times a week. The portal is called a fistula.

    Jo Ann has a catheter, meant to be a temporary hookup for dialysis.
Because her transplant is already scheduled, she has kept the catheter
instead of having a fistula created.

    The catheter, two plastic access tubes attached to her jugular vein,
must be kept dry at all times.

    She wears high collars or turtlenecks at school to hide the tubes
hanging below her collar bone. At dialysis, she wears T-shirts
strategically sliced in front to let the catheters peek through.

    Although she can't wait to have pizza, chocolate and beer again, Jo
Ann said she'll pine for the large block of uninterrupted time to herself,
stuck in a chair, when it's all over.

    "I will miss dialysis because I won't get to read anymore," she said,
tucking the latest best-seller into her bag.

    Looking ahead

    Suzanne knows her sister is just trying to put the best face on a
difficult situation.

    The sisters' mother, Joan, was on dialysis for 91/2 years.

    The women joke about how their mother, after getting a kidney
transplant, expressed amazement in the advancements in public restrooms.
She died in April 2003. Her kidneys didn't function, so she had no need
for a public restroom for almost a decade. She received her transplant in
1988.

    They laugh, remembering their mother's surprise at multiple toilet
paper roll dispensers, but Suzanne said the reality of her sister's
dialysis is grim.

    "I know the toll it takes on the body," she said.

    Imagining her sister on dialysis indefinitely is the primary reason
Suzanne agreed to give up a kidney. There remains a small chance Suzanne
or her daughters could still succumb to PKD, even though tests show they
probably do not have the disease.

    "When we both express our fear to each other about the upcoming
surgery, she always tells me if I change my mind, she would understand and
still love me," Suzanne said.

    "I won't change my mind."

    Part 3