>>
Gary: JUST AHEAD ON "NEED
TO KNOW," AREA RESIDENTS IN
NEED OF A HEART TRANSPLANT CAN
NOW RECEIVE ONE RIGHT HERE IN
ROCHESTER.
BACK IN FEBRUARY, STRONG
MEMORIAL HOSPITAL OPENED ITS
HEART FAILURE AND
TRANSPLANTATION PROGRAM.
IN JUST A FEW MINUTES YOU'LL
MEET STRONG'S FIRST TRANSPLANT
RECIPIENT AND A LOCAL MAN
WAITING FOR A DONOR.
WE'LL ALSO BRING YOU THE STORY
OF A LITTLE BOY AND HIS FAMILY
WHO HAVE BEEN WAITING FOR A
HEART FOR TWO-AND-A-HALF
YEARS.
BUT FIRST, A LOOK INTO STRONG
MEMORIAL HOSPITAL'S HEART
PROGRAM.
IT'S ALL COMING UP NEXT ON
"NEED TO KNOW."
>> THEY'RE WAITING TO GIVE YOU
A GOOD HEART.
AND LISTEN, WE'RE BOTH ON THE
SAME PAGE.
THEY'RE INTERESTED IN HAVING A
GOOD SUCCESS RATE IN ORDER TO
GET ACCREDITED, AND I'M
INTERESTED IN A GOOD SUCCESS
RATE BECAUSE I WANT TO LIVE.
>> THIS IS "NEED TO KNOW," THE
ROCHESTER AREA'S ONLY IN-DEPTH
NEWS PROGRAM.
"NEED TO KNOW" IS A PRODUCTION
OF WXXI NEWS AND PUBLIC
AFFAIRS, COVERING ISSUES,
POLITICS, EDUCATION AND
CURRENT EVENTS.
>> "NEED TO KNOW" IS MADE
POSSIBLE BY THE DAISY MARQUIS
JONES FOUNDATION, BY DORSCHEL
LEXUS, AND THROUGH THE SUPPORT
OF VIEWERS LIKE YOU.
>> Gary: THANK YOU FOR JOINING
US.
I'M GARY WALKER.
STRONG MEMORIAL HOSPITAL HAS
BEEN DOING LIFE-SAVING ORGAN
TRANSPLANTS FOR DECADES, BUT
ONLY THIS YEAR DID THE
HOSPITAL START UP ITS HEART
TRANSPLANT PROGRAM, A
PROCEDURE THAT YOU OR A LOVED
ONE MAY WELL NEED SOME DAY.
AND FOR AREA RESIDENTS, IT
COULD NOT HAVE COME AT A
BETTER TIME.
THE TRANSPLANT CENTER,
APPROVED BY UNOS, THE UNITED
NETWORK FOR ORGAN SHARING, HAS
ALREADY PERFORMED EIGHT
TRANSPLANTS.
MOST OF THE PATIENTS ARE FROM
OUR AREA.
IN ORDER FOR STRONG TO
MAINTAIN ITS TRANSPLANT
LICENSE, THE HOSPITAL MUST
PERFORM FOUR MORE TRANSPLANTS
BY YEAR'S END.
AS LONG AS DONORS COME
FORWARD, THAT SHOULDN'T BE A
PROBLEM.
CURRENTLY THERE ARE TEN
PEOPLE, MOSTLY LOCAL, WHO ARE
WAITING FOR THAT CALL.
WHEN A PATIENT AND THEIR
FAMILY FINDS OUT THAT A HEART
TRANSPLANT IS THEIR ONLY
CHANCE FOR SURVIVAL, HOW DO
THEY SURVIVE THE WAITING GAME?
WXXI'S JENNIFER REED HAS THE
STORY OF A LOCAL MAN WHO'S
LEARNED THAT THE ONLY WAY TO
SURVIVE IS ONE DAY AT A TIME.
>> IT'S A GAME OF LUCK, IF YOU
WILL, OR CHANCE.
I HAVE A FEELING THAT
ULTIMATELY I'LL GET ONE.
SOONER OR LATER I'LL BE AT THE
TOP OF THE LIST, BUT WHETHER
I'M NUMBER TWO, TEN OR FIFTY,
I DON'T KNOW, AND IT CHANGES
EVERY DAY.
>> Jennifer: BRADDOCK BAY
RESIDENT STEVEN CHECHAK IS
WAITING FOR A HEART.
BUT IN ORDER TO STAY ON THE
LIST, HE HAD TO MAKE SOME
SIGNIFICANT LIFESTYLE CHANGES,
LIKE SUBSTITUTING A HOSPITAL
SUITE FOR HIS HOME ON THE
LAKE.
>> EVERY AFTERNOON WE WOULD GO
OUT AND SIT ON THE PORCH, HAVE
A GLASS OF WINE, AND WATCH THE
BOATS GO BY AND JUST REALLY
ENJOY LIFE.
AND NOW I CAN'T EVEN GO
OUTSIDE.
I'M NOT ALLOWED OFF THE FLOOR
UNLESS I GET A NURSE TO PUT IN
A PORTABLE HEART MONITOR AND
TAKE YOU OUTSIDE FOR A FEW
MINUTES.
SO, YOU KNOW, YOU GO OUT AND
YOU SIT BY THE BUS ROUTE FOR
15, 20 MINUTES, HALF AN HOUR,
AND THEN YOU HAVE TO COME BACK
IN.
>> Jennifer: CHECHAK HAS BEEN
TEMPORARILY RESIDING AT STRONG
MEMORIAL HOSPITAL FOR THE PAST
SIX MONTHS, CONTINUING TO WAIT
FOR A SUITABLE MATCH.
>> I WAS JUST DEATHLY AFRAID I
WOULDN'T BE A CANDIDATE.
NOW THAT I AM A CANDIDATE, I'M
RELATIVELY COMFORTABLE WITH
IT.
I HAVE HAD THE PLEASURE OF
MEETING THIRTEEN OTHER PEOPLE
-- THERE WAS ONE IN HERE THIS
MORNING -- THAT HAVE HAD
HEARTS, SOME OF THEM TEN,
TWELVE YEARS AGO, SOME SIX
MONTHS AGO.
THEY'RE ALL DOING WELL, AND
THEY LOOK GOOD.
>> WHEN THAT HEART COMES UP,
WE WANT STEVE IN THE BEST
SHAPE POSSIBLE.
RIGHT NOW WE HAVE ACTUALLY
FIVE PEOPLE IN THE HOSPITAL
WAITING FOR HEARTS, AND THEY
ARE A HUGE SUPPORT SYSTEM FOR
EACH OTHER.
WE ALSO HAVE A TEAM HERE WHICH
ENCOMPASSES SOCIAL WORKERS,
PSYCHIATRISTS, DIETITIANS,
PHYSICAL THERAPY, THE NURSE
COORDINATORS, THE
CARDIOLOGISTS, THE SURGEONS.
SO THERE'S A HUGE TEAM HERE TO
SUPPORT THOSE FAMILIES AND
PATIENTS.
>> Jennifer: BEVERLY WALKER,
WHO'S ON-CALL 24/7, IS ONE OF
STRONG'S HEART TRANSPLANT
COORDINATORS.
SHE SAYS MANAGING THE WAITING
GAME IS THE TOUGHEST PART.
>> FROM MY PAST EXPERIENCE, I
HAVE HAD PATIENTS WAIT IN THE
HOSPITAL FOR A YEAR WAITING ON
A HEART, AND JUST FROM A
PERSONAL AND FAMILY
PERSPECTIVE, THAT IS SO
STRESSFUL.
IT CHANGES ALL OF THE DYNAMICS
OF A FAMILY.
>> I WOULD SAY THE SINGLE
BIGGEST PROBLEM THAT I'M
LOOKING AT RIGHT NOW IS WHAT
IT'S DOING TO MY WIFE.
THIS IS HARD ON HER.
FINALLY I TOLD HER, I SAID,
"DON'T BE COMING HERE EVERY
DAY."
THE OTHER DAY SHE WENT TO THE
DOCTOR AND HER BLOOD PRESSURE
WAS HIGHER THAN A KITE AND
IT'S AFFECTING HER.
SHE'S GETTING DISCOURAGED AND
SO THAT BOTHERS ME.
>> Jennifer: CHECHAK SAYS IT
COULD BE A LOT WORSE IF HE
WASN'T WAITING RIGHT HERE IN
ROCHESTER.
>> IN THE PAST, PATIENTS HAVE
HAD TO TRAVEL TO EITHER
CLEVELAND OR PITTSBURGH OR
BOSTON OR PHILADELPHIA OR NEW
YORK CITY.
IT'S NOT SORT OF JUST THE
IMMEDIATE FINANCIAL BURDEN,
BUT IT'S A LONG-TERM
COMMITMENT TO TRAVELLING AND
GOING TO THESE PLACES.
>> Jennifer: CHECHAK SAYS
BEING ABLE TO STAY IN THE AREA
STRENGTHENS HIS SUPPORT SYSTEM
AND HELPS HIM GET THROUGH THE
WAITING PERIOD, WAITING FOR
THE PERFECT MATCH.
>> I WOULD PROBABLY HAVE A
HARD TIME LIVING WITH THE IDEA
THAT I TOOK A HEART THAT
SOMEONE ELSE DIED 'CAUSE THEY
DIDN'T GET.
IT'S MANAGEABLE.
I HAVE A FEELING THAT
ULTIMATELY I'LL GET ONE.
(Music)
>> Gary: THE SUCCESS RATES OF
TRANSPLANTS CONTINUE TO RISE,
BUT MEETING THE SUPPLY AND
DEMAND FOR ORGAN DONATIONS
CONTINUES TO DECLINE.
A TYPICAL WAIT FOR A HEART
TRANSPLANT PATIENT IS ONE
YEAR.
MANY PATIENTS DIE WAITING.
JOINING ME IN STUDIO ARE:
Dr. LEWAY CHEN, STRONG
MEMORIAL HOSPITAL'S SENIOR
TRANSPLANT CARDIOLOGIST AND
DIRECTOR OF THE HEART
TRANSPLANT PROGRAM; DAVID
BEATSON, STRONG'S FIRST HEART
TRANSPLANT RECIPIENT.
WELCOME, DAVID.
AND SUE CIMBOLO, WHO WORKS
WITH THE FINGER LAKES DONOR
RECOVERY NETWORK.
THANK YOU ALL FOR JOINING US.
I'M PLEASED TO BE HERE AND OF
COURSE I THINK I WANT TO BEGIN
WITH DAVID AND SAY YOU LOOK
GREAT.
HOW DO YOU FEEL?
>> GREAT, ABSOLUTELY GREAT.
>> Gary: IT'S BEEN SINCE
FEBRUARY NOW, RIGHT?
>> AS OF FEBRUARY.
>> Gary: YOU LOOK FABULOUS.
YOUR COLOR'S GREAT; YOU LOOK
VITAL.
YOU'RE FEELING GOOD, HUH?
>> FEELING VERY GOOD.
>> Gary: WELL, IT'S OUR
PLEASURE TO HAVE YOU HERE.
I WANT TO TURN THE
CONVERSATION QUICKLY TO
Dr. CHEN AND ASK, I GUESS, WHY
HERE?
WHY ROCHESTER?
THERE ARE, WHAT, SIX CENTERS
NOW IN NEW YORK STATE?
I GUESS WHY ROCHESTER?
>> WELL, THERE ARE SIX
CENTERS, BUT OUR GEOGRAPHIC
LOCATION, WHICH IS A FAIRLY
LARGE AREA HERE IN WESTERN NEW
YORK AND THE SOUTHERN TIER,
WAS UNDERSERVED, AND WE KNEW
THAT FROM THE SURVEYS THEY
HAVE DONE AND FROM LOOKING AT
THE MEDICAL RECORDS THAT THERE
ARE PEOPLE IN THIS AREA THAT
WEREN'T GETTING HEART
TRANSPLANTS AS AN OPTION.
>> Gary: I ASK THAT QUESTION
BECAUSE I KNOW THAT BUFFALO
HAD A CENTER FOR AWHILE, BUT
THEY DID NOT MEET THE MINIMUM
NUMBER OF TRANSPLANT
OPERATIONS TO KEEP THEIR
LICENSE UP, SO I'M WONDERING
IF THERE WASN'T ENOUGH
BUSINESS FOR BUFFALO, WILL
THERE BE ENOUGH BUSINESS FOR
ROCHESTER?
>> IT'S A COMPLICATED
SITUATION.
IT'S NOT JUST NUMBERS; IT'S
THE SUPPORT OF THE AREA, THE
HEALTH CARE SYSTEM, THE
INSURERS, AND IT'S A VERY
COMPLEX THING.
BUT I THINK WE WILL HAVE AND
WE DO HAVE THAT SUPPORT HERE.
>> Gary: SUE, LET ME ASK YOU A
QUESTION NOW: LIFE-SAVING
ORGAN DONATIONS, THAT'S PRETTY
MUCH PART AND PARCEL OF YOUR
LIFE.
THAT'S YOUR BUSINESS.
LET ME ASK, THOUGH, IS IT A
DIFFERENT GAME WHEN YOU'RE
LOOKING FOR HEART TRANSPLANTS
THAN IT IS WHEN LOOKING FOR
LIVERS AND ORGAN TISSUE AND
KIDNEYS?
>> IT'S NOT A DIFFERENT GAME.
YOU KNOW, EVERY DONOR THAT WE
GET WE LOOK AT FOR EVERY ORGAN
THEY COULD POSSIBLY DONATE
THAT THE FAMILY WOULD WANT TO.
>> Gary: SO YOU WERE LOOKING
FOR HEARTS EVEN BEFORE
ROCHESTER HAD A PROGRAM?
>> RIGHT.
WE'RE VERY SUCCESSFUL AT
GETTING HEARTS FOR
TRANSPLANTS.
>> Gary: SO LOOKING FOR A
HEART DONOR IS REALLY NOT ANY
DIFFERENT THAN LOOKING FOR
OTHER ORGAN DONATIONS, RIGHT?
>> NO.
THERE'S AN AGE CRITERIA, YOU
KNOW.
THE UPPER AGE FOR A HEART IS
ABOUT 60 TO 65.
IT KIND OF DEPENDS ON WHAT'S
GOING ON WITH THE DONOR.
SO OTHER THAN THAT, THERE'S
NOT REALLY...
>> Gary: LET'S TALK A LITTLE
BIT ABOUT HAVING THIS CENTER
HERE.
AND, DAVID, I WANT TO TURN TO
YOU, HAVING SUCH A MASSIVE
SURGERY, STILL WHEN YOU THINK
ABOUT IT... UNBELIEVABLE.
DOES HAVING THE SURGERY HERE
IN ROCHESTER AND THE
SUBSEQUENT THERAPIES HERE IN
ROCHESTER, HAS THAT MADE A BIG
DIFFERENCE IN THE QUALITY OF
YOUR LIFE AS OPPOSED TO
SOMEBODY WHO HAS TO, SAY, GO
TO CLEVELAND OR NEW YORK OR
PITTSBURGH?
>> OF COURSE IT HAS.
IF WE HAD TO GO TO CLEVELAND
OR NEW YORK OR WHATEVER, I
PROBABLY WOULD HAVE HAD TO
SELL MY HOME, ET CETERA, SO
THAT WE COULD HAVE SURVIVED.
>> Gary: SELL YOUR HOME
BECAUSE...
>> JUST THE EXPENSES.
RELOCATING, YOU'VE GOT TO BE
ABLE TO AFFORD TO LIVE THERE
AS WELL AS HERE AND OF COURSE
THAT WOULD HAVE MEANT MY WIFE
WOULD HAVE BEEN OUT OF A JOB.
>> Gary: CAN YOU GIVE ME A
PICTURE OF WHAT, YOU KNOW,
WHAT IT IS ON YOUR PART -- HOW
MANY VISITS TO THE DOCTOR...
JUST TO TAKE CARE OF YOUR NEW
HEART, HOW MUCH A PART OF A
WEEK IS THAT FOR YOU?
>> A PART OF A WEEK?
AT THIS POINT, AS I SAID, IT'S
LIKE EVERY SIX WEEKS THAT I GO
IN FOR A BIOPSY.
I GO IN OCCASIONALLY, AS I
SAID, FOR BLOOD WORK.
BUT OTHER THAN THAT, IT'S
MAINLY JUST MY REGIMENT AT
HOME OF KEEPING MY MEDICATIONS
THAT I TAKE IN THE MORNING AND
TAKE AT NIGHT, AND OVER A
PERIOD OF TIME YOU GET TO
WHERE YOU GET IT INTO A
ROUTINE TO WHERE IT IS NOT --
IT'S NOT AS COMPLICATED AS IT
WAS WHEN YOU FIRST STARTED
OUT.
>> Gary: STILL, YOU CAN DO THE
BLOOD WORK AND YOUR BIOPSIES
HERE IN ROCHESTER --
>> RIGHT HERE.
>> Gary: AND THAT MAKES A BIG
DIFFERENCE TO YOUR QUALITY OF
LIFE.
>> SURE DOES.
>> Gary: IT SEEMS TO ME THAT
STRONG JUST CAN'T HAVE
FACILITIES AND SURGEONS THAT
DO THE TRANSPLANTS, DOCTOR;
YOU MUST HAVE AN ENTIRE SYSTEM
IN PLACE FOR CARE
BECAUSE UNLESS I'M WRONG, A
HEART TRANSPLANT PATIENT
PROBABLY NEEDS FOLLOW-UP AND
CARE FOR THE REST OF THEIR
LIFE.
>> I THINK THAT'S ONE OF THE
STRENGTHS OF STARTING THE
PROGRAM HERE IS THE
ESTABLISHED TRACK RECORD OF
ORGAN TRANSPLANTATION, AND WE
BUILT ON THE SYSTEM THAT'S
ALREADY IN PLACE WITH SHARING
RESOURCES AND PERSONNEL.
BUT IT IS, AS YOU HEARD FROM
THE VIDEO EARLIER, THE NUMBER
OF PEOPLE THAT ARE INVOLVED AT
OUR HOSPITAL AND OUTSIDE THE
HOSPITAL IS TREMENDOUS.
IT TAKES A BIG TEAM TO MAKE
THIS ALL WORK.
>> Gary: WOULD IT BE
PRESUMPTUOUS TO SAY THAT
HAVING A FACILITY HERE IN YOUR
HOMETOWN, IS THAT GOING TO ADD
-- I DON'T KNOW, CAN YOU
MEASURE IT?
WILL THAT ADD YEARS TO A HEART
TRANSPLANT PATIENT'S LIFE?
WILL IT REDUCE MEASURABLY THE
LEVEL OF STRESS?
I MEAN, ARE THERE MEASURES FOR
THIS?
>> TO SOME DEGREE.
WE KNOW THERE ARE PEOPLE WHO
DECIDED NOT TO LEAVE ROCHESTER
AND DAVID, FOR EXAMPLE, HAD
BEEN OFFERED THE OPPORTUNITY
TO TRAVEL TO CLEVELAND OR TO
OTHER PROGRAMS TO BE EVALUATED
AND BE LISTED AND AT THE TIME
HE DIDN'T FEEL IT WAS AN
OPTION FOR HIM.
HE LUCKILY WAS MAINTAINED WITH
THREE TIMES A WEEK INFUSIONS
OF MEDICINES TO KEEP HIM
GOING.
EVEN NOW WE HAVE MANY PATIENTS
WHO ARE TRANSFERRING TO US FOR
THEIR POST-TRANSPLANT CARE,
TRANSFERRING FROM OTHER
CENTERS BECAUSE THE WEEKLY,
MONTHLY OR WHATEVER TRIPS TO A
DIFFERENT CITY AND TO UNDERGO
TESTING IS DIFFICULT.
>> Gary: I GUESS THAT'S WHAT I
WAS GETTING AT.
FOR SOMEONE WHO HAD A HEART
TRANSPLANT SAY AT THE
CLEVELAND CLINIC FIVE YEARS
AGO, CAN THEY NOW GO TO
STRONG?
CAN THEY NOW, YOU KNOW, GET
THEIR POST-OP CARE THERE?
>> ABSOLUTELY.
AND WE WORK WITH THE
TRANSPLANTING CENTER AND THE
PATIENTS TO DO WHATEVER THEY
WISH US TO DO.
IF IT'S JUST MEASURING THEIR
BLOOD TESTS HERE TO ASSUMING
THE CARE... ANY VARIATION OF
THAT IS FINE WITH US.
>> Gary: I SEE.
LET ME TURN QUICKLY TO ORGAN
DONATIONS BECAUSE I KNOW THAT
YOU HAVE FOUR OPERATIONS LEFT
TO DO TO KEEP YOUR LICENSE UP.
I WANT TO RETURN TO THAT IN A
MINUTE, BUT I GUESS, YOU KNOW,
THE DEMAND IS THERE.
NOW, THIS IS A QUESTION OF
SUPPLY RIGHT NOW FOR HEARTS,
CORRECT?
NOW, DO YOU DRAW NATIONALLY?
ARE YOU DRAWING LOCALLY OR
BOTH?
>> WHEN THERE'S A POTENTIAL
DONOR, INFORMATION IS ENTERED
INTO THE NATIONAL NETWORK,
THEIR BLOOD GROUP AND THEIR
SIZE, AND THEN IT'S MATCHED.
HERE IN NEW YORK STATE, IT'S A
LOCAL/REGIONAL LIST THAT'S
DIFFERENT THAN OTHER AREAS OF
THE COUNTRY.
SO OUR PATIENTS THAT ARE
WAITING HERE ARE PUT ON A
LOCAL REGIONAL LIST SO THEY
COMPETE WITH THE PEOPLE THAT
ARE WAITING DOWN IN NEW YORK
CITY.
SO -- BUT...
>> Gary: IT'S AN INTERESTING
TERM, "COMPETE," BUT IN A
SENSE, I GUESS THAT'S WHAT IT
IS.
>> YEAH, THAT'S THE WORD THAT
WOULD DESCRIBE IT, BUT THAT'S
HOW THE LIST IS GENERATED HERE
IN NEW YORK STATE.
SOME OF OUR DONORS CAN CHOOSE
TO DIRECT-DONATE IF A
RECIPIENT HERE WILL MATCH THEM
IN OUR CENTER, AND IF THEY
MATCH THEM, WE CAN DO THAT.
WE DO THAT.
>> Gary: SO IF YOU'RE OF THE
MIND THAT "I WILL DONATE MY
ORGANS," PARTICULARLY MY
HEART, OR WHATEVER, THE FIRST
OPTION IS THAT I WOULD WANT MY
ORGANS TO STAY IN THE AREA.
THAT'S AN OPTION?
>> MANY PEOPLE WANT THAT.
THEY WANT THEIR DONATION TO
BENEFIT OUR LOCAL COMMUNITY
BECAUSE THEIR LOVED ONE WAS
HERE FROM THIS COMMUNITY AND
THEY WANT TO GIVE BACK TO THE
COMMUNITY HERE.
SO THAT IS AN OPTION.
IT DOESN'T ALWAYS WORK OUT
THAT WE CAN DO BECAUSE AGAIN,
IF THERE'S NOT SOMEBODY THAT
MATCHES THE BLOOD TYPE AND
SIZE...
>> Gary: SO WE'RE ACTUALLY
TALKING ABOUT A PRETTY -- A
LIGHTNING-QUICK TRANSACTION.
IF A HEART TRANSPLANT PATIENT
IS IN THE HOSPITAL, WAITING,
LITERALLY -- YOU STAYED IN THE
HOSPITAL DAY IN AND DAY OUT
AND WAITED FOR IT.
HOW LONG WAS YOUR WAIT?
>> OH, I WAS ABOUT FOUR WEEKS.
>> Gary: AND THAT'S UNDER THE
AVERAGE, I BELIEVE, RIGHT?
>> IT IS, BUT FROM MY
UNDERSTANDING IT WAS BECAUSE I
HAVE A RARE BLOOD TYPE AND
THERE WAS NOBODY ELSE ON THE
LIST WAITING FOR IT.
>> RIGHT.
>> Gary: DAVID, LET ME ASK
YOU, HAVE YOU MET YOUR DONOR
FAMILY?
>> NO.
>> Gary: DO YOU WANT TO?
>> MY WIFE AND I HAVE BEEN
WRITING A LETTER TO THE DONOR
FAMILY, ONE OF THE HARDEST
THINGS WE'VE EVER HAD TO DO.
I WOULD LIKE TO MEET THEM BUT
ONLY IF THEY WOULD FEEL
COMFORTABLE IN MEETING US.
>> Gary: I CAN IMAGINE HOW
SENSITIVE THAT IS.
DOCTOR, CAN I ASK YOU THIS,
JUST SO PEOPLE HAVE AN IDEA,
HOW MUCH DOES IT COST TO HAVE
A HEART TRANSPLANT?
>> IT'S HARD TO QUANTIFY IT
AND IT VARIES FOR DIFFERENT
PEOPLE.
THE COST OF THE TRANSPLANT
DEPENDS ON HOW LONG YOU'RE IN
THE HOSPITAL BEFOREHAND,
IF YOU HAVE TO HAVE
SPECIALIZED TREATMENT LIKE
MECHANICAL DEVICES BEFOREHAND
OR NOT, BUT IT'S A VERY --
>> Gary: IS THERE A RANGE?
>> WIDE RANGE.
IT WOULD BE KIND OF A
GUESSWORK, ANYWHERE FROM 100
TO 200,000, POSSIBLY.
>> Gary: SO IS IT POSSIBLE
THEN FOR FOLKS WHO HAVE -- I
DON'T KNOW, MAYBE WITH MINIMUM
HEALTH INSURANCE OR MEDICARE
OR MEDICAID... IS HEART
TRANSPLANTATION A POSSIBILITY
FOR JUST ABOUT ANYONE?
>> IT IS.
AND YOU HAVE TO LOOK AT IT
ALSO THAT HEART FAILURE AND
THE CARE OF THAT -- IT'S NOT
-- IT'S A RECURRING COST.
IF A THERAPY SUCH AS HEART
TRANSPLANT IS NOT DONE, THERE
ARE A LOT OF OTHER THERAPIES
THAT ARE DONE, AND OVER TIME
THE COST OF THOSE THINGS ADD
UP QUITE A BIT.
SIMILARLY IN KIDNEY TRANSPLANT
AND DIALYSIS, A THERAPY THAT
IS LIFE-CHANGING AND
LIFE-SAVING ALTERS THE COST
TRAJECTORY OF THAT PATIENT.
>> Gary: HOW LONG DID IT TAKE
STRONG TO PUT THIS TOGETHER?
>> WE WORKED ON THIS FOR A
VERY LONG TIME AND I THINK
IT'S REALLY IN THE LAST YEAR,
YEAR AND A HALF THAT THE REALLY
MAJOR PUSH HAS GONE ON.
AND I THINK SINCE THIS PAST
FALL, THE FALL OF 2000, WHEN
WE BEGAN TO REALLY ORGANIZE
THE TEAM TO GET READY, TO BE
READY TO DO THE FIRST
TRANSPLANT IN FEBRUARY.
>> Gary: ARE YOU NERVOUS ABOUT
MEETING THIS QUOTA?
>> NO.
>> Gary: EVERYONE IS SHAKING
THEIR HEAD.
YOU SEEM VERY CONFIDENT.
I JUST KEEP THINKING ABOUT
BUFFALO AND THINKING, "GEES, I
HOPE WE PASS MUSTER HERE."
>> THE NUMBER OF TWELVE THAT
PEOPLE DISCUSS, IT'S A
MEDICARE REQUIREMENT FOR
MEDICARE CERTIFICATION.
IT'S NOT NECESSARILY A
REQUIREMENT FOR US TO CONTINUE
THE PROGRAM.
AND THE NUMBER OF -- IT'S
ACTUALLY THE CALENDAR YEAR
FROM THE ONSET OF THE FIRST
TRANSPLANT, SO TO BE DOING
TWELVE BY FEBRUARY IS -- WE
HOPE -- NOT A PROBLEM.
OBVIOUSLY, IT DEPENDS ON THE
DONATIONS.
>> Gary: SO I GUESS BOTH OF
YOUR WORK IS REALLY KEY ON
EACH OTHER, WITH SUE'S WORK
AND YOUR WORK JUST SO
INTIMATELY RELATED.
I HAVE A QUESTION, TOO, DOES
THIS PROGRAM ALSO COVER
CHILDREN?
IS THERE PEDIATRIC HEART
TRANSPLANTS THAT WOULD TAKE
PLACE AT STRONG?
>> NOT CURRENTLY.
THAT IS SOMETHING THAT AS
ANOTHER PROGRAM TO DEVELOP WE
HOPE TO DO THAT.
AGAIN, IT'S AN AREA THAT IS
UNDERSERVED IN OUR COMMUNITY,
PEDIATRIC
CARDIOTRANSPLANTATIONS.
>> Gary: AS IT STANDS RIGHT
NOW, WHERE'S THE CLOSEST PLACE
THAT A CHILD COULD GO FOR A
HEART TRANSPLANT FROM OUR
AREA?
>> PROBABLY COLUMBIA WOULD BE
THE CLOSEST.
>> Gary: SO NEW YORK CITY.
>> NEW YORK CITY.
>> Gary: CAN YOU GIVE ME AN
IDEA OF WHAT STRONG HOPES FOR
OUT OF THIS PROGRAM?
OBVIOUSLY TO SAVE LIVES,
OBVIOUSLY TO BECOME MORE
EXPERT AT THIS, BUT IS THERE A
TARGETED SIZE FOR THIS
PROGRAM?
IS THERE THE RIGHT AMOUNT OF
HEART TRANSPLANTS TO DO EVERY
YEAR?
HOW MUCH IS TOO LITTLE?
HOW MUCH IS TOO MUCH?
GIVE ME AN IDEA OF WHERE
STRONG WANTS TO BE WITH THIS.
>> YOU WANT TO MEET THE NEEDS
OF THE COMMUNITY TO BE SERVED,
AND OUR COMMUNITY CURRENTLY
EXTENDS -- IT'S THIS REGION,
BUT IT EXTENDS QUITE FAR, FROM
JAMESTOWN TO WATERTOWN TO...
YOU KNOW, THIS WHOLE REGION.
THE DATA FROM LOOKING AT OTHER
INSTITUTIONS IS TO KNOW THAT A
MEDIUM TRANSPLANT PROGRAM,
MEANING TRANSPLANTING ANYWHERE
FROM 20 TO 40 HEART
TRANSPLANTS A YEAR IS A GOOD
NUMBER TO BE IN BECAUSE YOU DO
ENOUGH TO STAY GOOD AT IT; YOU
DON'T DO TOO MANY BECAUSE AT
SOME POINT YOU HAVE WHAT YOU
MIGHT CONSIDER RISK TO THE
PATIENTS AND OUTCOMES MAY BE
POOR.
>> Gary: WE ONLY HAVE A COUPLE
OF MINUTES LEFT, BUT I'M
LOOKING AT DAVID AND YOU LOOK
SPECTACULAR.
>> THANK YOU.
>> Gary: WHAT MADE DAVID A
GOOD CANDIDATE FOR HEART
TRANSPLANT AND HOW IS HIS
PROGNOSIS?
WHAT IS MAKING HIS PROGNOSIS
LOOK SO POSITIVE?
>> WELL, I THINK DAVID HAS A
LOT OF HEART, AND THAT'S NOT
-- NOT EVEN NOW BUT BEFORE THE
TRANSPLANT.
I THINK HIS STRENGTH AND HIS
WILL TO LIVE AND HIS FAMILY
AND HIS SUPPORT HAS BEEN VERY
IMPORTANT.
HE WAS A VERY SICK MAN AND,
YOU KNOW, THE TIMING WORKED
OUT FOR HIM AND I THINK THAT
THE PROCEDURE, THE PROCESS MAY
NOT -- HE MAY NOT HAVE WANTED
TO BE THE FIRST PERSON IN
ROCHESTER BECAUSE WITH
ANYTHING THAT'S NEW, IT'S A
SYSTEM YOU HAVE TO TEST, BUT
THOSE QUALITIES IN HIM HAVE
CONTINUED.
IT'S NOT AN EASY ROAD,
ESPECIALLY EARLY ON, AND HE'S
DONE A VERY GOOD JOB.
>> Gary: DAVID, WERE YOU
NERVOUS ABOUT BEING THE FIRST
OUT OF THE BLOCK HERE?
>> NO, NOT AT ALL.
>> Gary: YOU HAVE A LOT OF
CONFIDENCE IN THE SYSTEM AND A
LOT OF CONFIDENCE IN STRONG?
>> I HAVE A LOT OF CONFIDENCE
IN STRONG, A LOT OF CONFIDENCE
IN THE PEOPLE THAT WERE THERE,
THAT ANY INFORMATION I NEEDED
WAS THERE.
MY WIFE AND I WERE BOTH VERY,
VERY COMFORTABLE.
>> Gary: WHAT WOULD YOU TELL
PEOPLE WAITING FOR A HEART
RIGHT NOW WATCHING THIS
PROGRAM?
>> DON'T BE DISCOURAGED.
>> Gary: HANG IN THERE, HUH?
>> HANG IN THERE.
>> Gary: SUE, I WOULD LIKE TO
GIVE YOU THE LAST WORD BECAUSE
WHAT WOULD YOU LIKE TO TELL
PEOPLE ABOUT ORGAN DONATION
RIGHT NOW?
>> YOU JUST REALLY NEED TO
THINK ABOUT IT AND TALK TO
YOUR FAMILY ABOUT IT.
THAT'S PROBABLY THE MOST
IMPORTANT THING.
THEY'RE THE ONES WHO ARE GOING
TO MAKE THAT DECISION AT THE
TIME OF YOUR DEATH.
THE PEOPLE THAT STRUGGLE ARE
THE ONES WHO HAVE NEVER HAD A
CONVERSATION, NEVER, EVER
THOUGHT ABOUT IT.
I JUST URGE PEOPLE TO THINK
ABOUT IT.
>> Gary: HOW DO YOU TALK TO
CHILDREN ABOUT THAT?
>> CHILDREN, YOU KNOW, WE DO A
LOT OF EDUCATION IN ELEMENTARY
AND IN THE HIGH SCHOOL, AND
THEY'RE ACTUALLY PRETTY
UNDERSTANDING OF IT.
THEY -- IF THEY HAVE A
QUESTION, THEY ASK IT.
YOU KNOW, I THINK WE HAVE
BECOME AFRAID TO TALK TO
CHILDREN ABOUT IT, BUT A LOT
OF CHILDREN END UP GOING HOME
AND TALKING TO THEIR PARENTS
AFTER WE'RE THERE ABOUT ORGAN
DONATION.
MANY CHILDREN THINK IT'S A
GREAT IDEA.
>> Gary: OKAY.
SO THE SHORT STORY IS THAT
THERE'S STILL A LOT OF DEMAND
AND THE SUPPLY IS LAGGING THE
DEMAND?
>> YES.
>> Gary: TALK TO YOUR FAMILY,
BUT YOU ALSO HAVE TO TRIGGER
IT WITH SOME SORT OF LEGAL --
>> RIGHT.
YOU CAN SIGN A DONOR CARD.
>> Gary: GREAT.
THAT'S ALL THE TIME WE HAVE
FOR THIS SEGMENT.
I WANT TO THANK ALL MY GUESTS
FOR BEING HERE.
DAVID, GREAT TO SEE YOU.
I DO WISH YOU WELL AND A LONG
LIFE.
NOW WE HAVE A STORY ABOUT A
THREE-YEAR-OLD BOY AND HIS
FAMILY WHO WERE WAITING FOR A
HEART TRANSPLANT.
WE HAVE BEEN FOLLOWING THIS
PARTICULAR STORY FOR A COUPLE
OF YEARS NOW AND TODAY WE
WOULD LIKE TO GIVE YOU ANOTHER
UPDATE.
WXXI's JENNIFER REED HAS THE
STORY.
>> HE'S REALLY WORKED HIS WAY
INTO THE HEARTS OF A LOT OF
PEOPLE.
>> Jennifer: ROCHESTER NATIVE
KIMBERLY LEHMAN HOSER AND HER
HUSBAND RUSSELL HAVE BEEN
SPREADING THE WORD ABOUT ORGAN
DONATION AWARENESS.
THE HOSERS, WHO NOW LIVE IN
OHIO, SPENT YEARS WAITING FOR
A HEART FOR THEIR SON JONAH.
JONAH WAS BORN WITH A SEVERE
HEART DEFECT.
THE HOSERS FIRST TRIED A
SURGICAL ROUTE, BUT HIS HEART
COULD NOT BE REPAIRED AND
TRANSPLANTATION BECAME THEIR
ONLY OPTION.
>> IT WAS LIKE SCIENCE
FICTION.
WE DIDN'T KNOW ANYONE WHO HAD
EVER HAD A TRANSPLANT.
>> Jennifer: ACROSS THE
NATION, THERE ARE ABOUT 135
CHILDREN WAITING FOR A NEW
HEART.
LESS THAN 30 OF THOSE 135
ACTUALLY RECEIVE ONE.
>> WE HAD BEEN TOLD ORIGINALLY
THAT A YEAR WAS A PRETTY
TYPICAL WAIT.
IT'S BEEN ALMOST A YEAR AND A
HALF NOW.
>> IT'S A LONG WAIT.
>> I WOULD BE LYING IF I
DIDN'T SAY I HAVE THOUGHT
ABOUT ALL THE POSSIBLE
OUTCOMES, INCLUDING DYING...
>> I'M AN OPTIMISTIC PERSON
AND I REFUSE TO BELIEVE
ANYTHING BUT THE BEST FOR MY
SON.
SO I SEE HIM AS A HEALTHY
FOUR-YEAR-OLD GOING TO
PRESCHOOL AND WAVING GOOD-BYE
TO ME...
I WOULD THANK GOD SO MUCH
BECAUSE THAT'S WHAT I WANT
WITH ALL MY HEART AND ALL MY
SOUL, SO MUCH THAT IT HURTS.
THAT'S ALL I WANT.
>> Jennifer: ANOTHER YEAR WENT
PAST, BUT ON FEBRUARY 23rd,
2001, THE HOSERS GOT THE CALL
THEY HAD BEEN WAITING FOR.
IT WAS A PERFECT MATCH.
JONAH BEAT THE ODDS AND GOT
HIS NEW HEART.
BUT THE CELEBRATION IS
BITTERSWEET.
>> IT WAS A REAL STRUGGLE FOR
ME AT FIRST.
I HAD TO COME TO GRIPS WITH
THE IDEA THAT ANOTHER FAMILY
SOMEHOW HAD TO LOSE THEIR
CHILD SO THAT MINE COULD LIVE.
IT DOESN'T FEEL VERY FAIR, YOU
KNOW.
IT'S REALLY HARD.
>> IT'S THE OPTION OF THE
DONOR FAMILY TO REVEAL
THEMSELVES IF THEY CHOOSE AND
HAVE ANY CONTACT WITH US.
>> ONE SPECIAL THING THAT WE
HAVE ALREADY TALKED ABOUT IS
WE WOULD LIKE TO FIND OUT WHAT
THE CHILD'S NAME IS AND WE
WANT TO RENAME OUR SON WITH
THAT NAME...
>> INCLUDE THAT NAME WITH HIS
CURRENT NAME.
>> \M Happy birthday to
Jonah \M
>> Jennifer: JONAH, WHO IS NOW
FOUR YEARS OLD, DOESN'T REALLY
UNDERSTAND WHAT HAPPENED, BUT
HE DOES UNDERSTAND WHAT IT
FEELS LIKE TO HAVE A HEALTHY
HEART AND A VERY HAPPY FAMILY.
>> WE WANT TO BE ABLE TO GIVE
HOPE TO OTHER COUPLES BY
SHOWING HOW GOOD HE'S DOING
BECAUSE THAT'S ONE THING THAT
CERTAINLY ALWAYS UPLIFTED OUR
SPIRITS IS WHEN WE COULD FIND
A SUCCESS STORY THAT WE COULD
SORT OF LATCH ON TO AND PULL
US THROUGH SOME OF THE
VALLEYS.
>> Jennifer: IT'S STILL A LONG
ROAD FOR THE HOSERS.
JONAH NEEDS TO TAKE SEVERAL
MEDICATIONS DAILY TO HELP WARD
OFF INFECTION AND REJECTION.
BUT TAKING CARE OF JONAH'S NEW
HEART IS A WELCOME CHALLENGE,
SOMETHING THEY HOPE TO SHARE
WITH THEIR DONOR FAMILY.
>> Gary: THE HOSERS HAVE MADE
CONTACT WITH THE DONOR FAMILY
THROUGH THEIR TRANSPLANT
CENTER, BUT AT THIS TIME THE
DONOR FAMILY HAS NOT YET COME
FORWARD.
THE HOSERS HOPE THAT IN TIME
THEY WILL.
RIGHT NOW, DOCTORS CONTINUE TO
ADJUST JONAH'S MEDICATION AND
SAY HIS RECOVERY IS COMING
ALONG BETTER THAN EXPECTED AND
THERE ARE NO FURTHER
COMPLICATIONS, A COMPLETE
SUCCESS STORY.
NEXT, IN OUR CULTURAL SEGMENT,
WE'LL TAKE A QUICK LOOK AT THE
UNIQUE WORLD OF GLASSBLOWING.
LOCAL ARTIST ELIZABETH LYONS
SHOWS WXXI PRODUCER JOY PARKER
HOW TO TURN SAND INTO ART.
(Music)
>> GLASS IS AN ANCIENT ART
FORM, BUT IN THE UNITED STATES
RIGHT NOW IT'S PROBABLY THE
HOTTEST MATERIAL.
GLASS ART IS GETTING A LOT OF
RECOGNITION.
PEOPLE ARE COLLECTING MASSIVE
AMOUNTS OF GLASS, AND IT'S A
PRETTY EXCITING TIME RIGHT
NOW.
THE PROCESS IS ACTUALLY THE
BEST PART OF IT BECAUSE IT'S
VERY ACTIVE... IT'S HOT.
IT'S CHALLENGING.
THERE'S ALWAYS SOMETHING NEW
YOU CAN LEARN.
THERE ARE QUALITIES I FIND IN
GLASS THAT I DON'T FIND IN
OTHER MEDIA: HOW IT HOLDS
LIGHT, THE TRANSLUCENCY, THE
ABILITY TO TAKE ON THE
CHARACTERISTICS OF OTHER KINDS
OF MATERIALS.
IT'S JUST REALLY BEAUTIFUL
MATERIAL.
WE'LL BE BLOWING A BASIC GLASS
SHAPE THAT WILL BE BLOWN INTO
A TWO-PART MOLD AND THAT GIVES
IT EVEN MORE DETAIL AND
DEFINITION.
SO HERE'S THE FINAL SHAPE OUT
OF THE MOLD.
IT'S A TEAM EFFORT.
THERE'S A SORT OF DIALOGUE YOU
HAVE WITH THE PEOPLE YOU WORK
WITH AS WELL AS WITH THE
MATERIAL.
>> Gary: AND HOW APPROPRIATE,
GLASS HEARTS.
ELIZABETH IS ALSO A TEACHER AT
THE SCHOOL OF THE ARTS IN
ROCHESTER.
BOTH HER AND HER STUDENTS ALSO
WORKED ON VARIOUS HORSES FOR
ROCHESTER'S HORSES ON PARADE.
THAT'S ALL THE TIME WE HAVE
FOR THIS EDITION OF "NEED TO
KNOW."
THANK YOU FOR JOINING US.
SEE YOU NEXT WEEK.
(Music)