TRIO
Long Island Chapter PO Box 81 Garden City, NY 11530 www.litrio.org 516-942-4940 -Scroll
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We are pleased to present member profiles on our site.
Michael
Palazzo
Gift
of Life
I am writing to you to share my story of “life”. My
name is Michael Palazzo; I am 37 years old and a Nassau County
Police Officer. On Nov.12, 2009 my life stopped, literally and
figuratively. That was the morning, after working an overnight
shift, I received the call. My doctor had taken blood from me
on Nov.10, 2009 and the results were in. What I heard, I was not
prepared for. The doctor simply said to my wife; Jennifer “get
Michael to an emergency room NOW, he is in stage 5 Renal Failure.”
When she told me that, I couldn’t believe it, I just finished
work, I felt fine. She insisted and to the emergency room I went.
When I walked in my Blood Pressure was 212/141, doctors swarmed
around me, needles sticking me, EKG’s, sonograms, anything
you could think of. I was admitted to the CCU unit that evening.
The next morning I received another call, this time from my nephrologists,
who told me I needed to be placed on dialysis immediately and
would need a kidney transplant.
While all of this was occurring a former student, Marcus Brito,
of my wife’s texted her to see how she was and send her
a picture of him in his Marine Uniform. Her response was that
“Michael is in CCU.” Marcus quickly responded and
asked “why?” Jen told him that I was in kidney failure
and would need a transplant. Never having met me personally Marcus
responded;” I have a kidney for him.” Over the next
few days I remained in the hospital and had a dialysis catheter
put in my chest and Marcus came and visited me. When I was released
the Friday before Thanksgiving, I was told I had to go for a kidney
biopsy before we could begin the transplant process. I went for
the biopsy and began the transplant process on Dec 14, 2009. On
that day I was screened for the transplant and Marcus filled out
the donor questionnaire and gave blood.
Finally, after a week of waiting on Dec.22, 2009 we received the
phone call that Marcus was a match for me. The odds were 1 in
30,000. Now on Jan. 15, 2010 we will be admitted into Columbia
Presbyterian and undergo our transplant.
I honestly can say Jan.15, 2010 will be the day Marcus and I celebrate
our brother bond. I don’t know what I would do without Marcus
and will be eternally grateful.
The reason we would like to appear on your show is to educate
people about organ donation, kidney disease, and the power we
have
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Ruth
Pohl, Miracle Patient
By
Howard Pohl, her husband
My wife Ruth Pohl is considered a miracle patient by the doctors
and staff at New York University Hospital. During her period of
illness, she cheated death on at least three different occasions.
Dr. Teperman, the head of NYU’s Transplant Unit, has referred
to her as “my best mistake.”
Ruth suffered for years from the degenerative illness Primary
Biliary Cirrhosis (PBC), a disease characterized by inflammatory
destruction of the small bile ducts within the liver. It was discovered
accidentally from a regular blood test. After a few more years,
the illness began to take a toll and, as the disease worsened,
her medications became increasingly ineffective. She became weakened
and virtually bedridden. One day, when I returned from work in
March 2003, she was unable to get out of bed, even to the bathroom.
Her liver specialist at the time sent her immediately to North
Shore Hospital where she had her first near-death experience.
Her potassium level was measured at 8.9 – any measurement
over 9 is considered deadly. She cheated death the first time
by improving slightly. She was transferred after a week to NYU’s
Transplant Unit where, after a few days, she developed an infection
and entered into an encephalitic hepatic coma. Uninformed about
these things, I thought she was merely weak and needed to sleep
continuously in order to recover. I received a call at work that
Dr. Teperman wished to talk to me upon my visit to the hospital
that evening.
Upon my arrival at the hospital, I knew things were not right
and when the social worker came out to see me; she did not have
to tell me the bad news. Ruth was not expected to last the weekend.
I sat in a small room with a desk and a telephone and called our
children, her friends and other family members to tell them that
the end was at hand.
That was April 8 2003. On April 11, she had apparently had enough
of the coma, woke up, and started chatting with my sister-in-law.
Teperman told me that it was only the second time in his career
that he had made that mistake but we were all thrilled that he
had erred. Death had lost out for a second time.
Despite her revival, Ruth’s health continued to decline.
We had nervously considered a live donor transplant with our daughter
but the window in which a live donor transplant could take place
had closed when Ruth’s health deteriorated further. She
dropped to a svelte 84 pounds, accompanied by jaundiced skin,
dangerously low blood pressure, and extreme weakness.
Ruth spent the next three months at the hospital. We watched her
MELD scores increase and her place on the transplant list rise
almost daily. During this time, she managed to explore the social
lives of the entire nursing staff and offer her counseling services
on their choice of boyfriends, whether to have children and whatever
else was pressing on the minds of nurses, staff, janitors, and
whoever else might be passing by.
On May 31 around 10:00 PM, I returned home via the LIRR after
another visit to the hospital. She called me near 11:00 PM and
told me that she was not permitted to eat after midnight. I thought
she had to prepare for yet another test the following day. She
then told her dense husband that she was going to receive a transplant
the next day. Her blood pressure that evening was 70/21, on the
threshold between life and death. She lived through that evening,
cheating death for a third time.
On June 1, her liver transplant was performed by Dr. Glyn Morgan,
a member of the NYU Transplant team. A 20-year-old had been murdered
in upstate New York and her liver was to be donated. Ruth was
discharged from the hospital ten days later and has not looked
back since. She is the corresponding secretary and publicist for
Long Island TRIO, a creator of beautiful knitted items, many of
which she donates to poor families, a great mom to our daughter,
soon to make her professional opera debut at the Boston Lyric
Opera, and our son, a communication design major at Syracuse University.
She is a friend and solver of problems for a host of friends,
and the best wife.
Something inside of her defied death many times over, and we are
all the better for it.
<>
Mother
crusades for organ donations
"He looked
like he was sleeping."
Claudia Grammatico's eyes still cloud up as she recalls that more
than eight-year-old vision of her son Paul, lying in a hospital
emergency room.
Though his body was virtually unscarred, the 26-year-old successful
stockbroker and athlete was brain-dead, killed with his best friend,
Michael Penny, in a May 19, 1999, traffic accident in Atlantic
Beach, L.I. Both were thrown from the car they were in, which
was being driven by a drunken driver.
"I was devastated," Grammatico said. "That was
my son. When you lose a child, you lose part of your future."
In the emotional blur that was her son's final hours, the Valley
Stream mom did something that would change her life, the lives
of dozens, if not hundreds, of other people, and in the process
created a lasting legacy for Paul, her only son.
When doctors approached her about donating Paul's organs, Grammatico
said yes.
"They took Mike directly to the morgue," Grammatico
said. "I was given something his mother was not given, and
that was a chance to say yes.
"You don't say that yes loudly, you whisper it," she
said. "That has to be one of the holiest words I have ever
said."
That yes meant a new life for then-48-year-old Joe Senatore of
Bay Shore, L.I., who got Paul's heart, and for the 63-year-old
retired science teacher in Kansas and 54-year-old Nevada father
who each got a kidney, the 56-year-old upstate New York woman
who got his liver and the 59-year-old Massachusetts woman who
got one of his lungs.
Paul's tissue and bone marrow also were procured and utilized.,
Grammatico would meet Senatore during an annual ceremony for organ-donor
families and transplant recipients at St. Patrick's Cathedral.
Her life also has been transformed.
Grammatico, 59, has become a tireless campaigner for organ donation,
traveling across the metro area, state and country. She remains
active with the New York Organ Donor Network.
She established a foundation in Paul's name, donations from which
prompted mercyFirst, a Syosset, L.I., home for teen boys that
Paul had supported, to name one of its dormitories Grammatico
Hall in his honor.
"Sixteen boys live in Paul's building," Grammatico said.
"It was dedicated a year to the day from when his heart was
transplanted. Many of these boys were abandoned. Paul always supported
them. He liked the Sisters of Mercy [who founded the facility
that became mercyFirst]."
Eyewear giant Davis Vision embraced the boys at mercyFirst, giving
them free annual vision care and sponsoring junkets to Jets and
Yankees games.
Valley Stream High School renamed its annual wrestling tournament
in Paul's honor, and city officials planted a tree in his name
in a local park.
Grammatico also wrote a song about organ donations, "The
Gifts of Life and Love," which has been sung at Knicks and
Rangers games and has become so popular that it has been recorded
by 23 different artists, and has several Spanish language versions.
Grammatico has been featured in a documentary about organ donations,
"The Space Between Breaths." The former schoolteacher
now does bereavement workshops for those trying to cope with a
loved one's loss.
"There are people who can't see light in the darkness,"
she said.
She has evolved into a member of a larger family - the world of
organ donors and transplant recipients and their families, bonded
by lives saved by lost lives.
"Every donor family is my family, because we know what it
means to lose a loved one," she said.
Standing in Nassau Medical Center, where Paul had been airlifted,
and seeing him lying there, Grammatico said even in her grief
organ donation seemed the right thing to do.
"When you lose a loved one that way, it doesn't matter if
you are rich or poor, it is still incredibly painful to deal with,"
she said. "You don't want to think about what they have to
do to get the organs. I always ask donor families how they came
to do what they did."
Every second Saturday in May, the song she wrote in 2001 is sung
at the "Remember and Rejoice" celebration at St. Patrick's
Cathedral.
Grammatico, whose license plate reads DONORMOM, has found her
calling.
"Horrible things do happen to regular people," she said.
"When something like this happens, people have the chance
in death to save someone else's life."
Grammatico can be reached at ClaudPaul@aol.com.
<>
LI
TRIO Member Profile – Ed Burki
Hi, I’m Ed Burki. I’ve been married more than 25 years
and have a great wife and beautiful 14-year-old daughter. I’ve
lived on Long Island my whole life except while attending college
in upstate New York in the mid-1970s. I grew up in Commack and
have lived in Manhasset for the past 17 years.
I’ve worked in the electronics, defense, and telecommunications
industries over the course of my career, and have negotiated multi-million
dollar contracts and visited clients throughout the world.
I received a kidney and pancreas transplant in March 2000. Previously,
I had been a type I juvenile diabetic for 34 years. Over this
time, I experienced many of the complications of diabetes, including
retinopathy, neuropathy, and kidney damage.
By the summer of 1999 my kidney function had deteriorated to the
point where I would need to begin dialysis by the end of the year.
I had discussed a possible transplant with my doctor and decided
that if I should be fortunate enough to get a kidney transplant,
I would to try to receive a pancreas as well to treat my diabetes.
I was listed with N.Y. Presbyterian Hospital in October 1999 at
the Rogosin Transplant Clinic.
On Jan. 2, 2000 I started the new millennium with my first dialysis
treatment. I sat in a chair for three-and-a-half hours with two
large needles inserted in my arm while a machine cleaned my blood.
I needed these treatments three times a week.
Just three months after I began dialysis, I received a call while
at work that changed my life. A kidney and pancreas were available
for transplant. I rushed home, gathered my family, made arrangements
and was off to New York City. That night about 10:00, I was wheeled
into surgery, and I awoke the next morning with a fully functioning
kidney and pancreas. I left the hospital in seven days with a
bagful of medications. I felt elation, thankfulness, fear and
wonder.
Just before my transplant I was told about LI TRIO by my nephrologist,
Dr. Lionel Mailloux. I was scheduled to attend a monthly meeting
featuring the transplant team from Rogosin, but I didn’t
make the meeting because I was in Rogosin receiving my transplant!
After a short time at home following my transplant, I felt compelled
to “give back”, and thought L I TRIO would be the
ideal forum. After attending a few meetings and getting to know
the members, I was asked to join the board of directors. I accepted
and continue to fulfill the position of director of special projects.
In this function I act as a “jack of all trades” helping
where necessary as deemed by the president and board members.
Volunteering for TRIO has given me a chance to meet wonderful
people who share a common bond. It is a worthwhile outlet for
me to help educate people about the need for donated organs and
how significantly they can change the lives of those in need.
It has also helped me cope with the myriad of physical and emotional
feelings I have almost each and every day.
Some of the most fulfilling and influential moments I’ve
experienced while volunteering for L.I. TRIO have come from the
one-on-one support sessions I have offered to those who have either
received a transplant or are waiting for one. I spend time at
my former dialysis center with patients to ease their fears and
answer their questions. I also compare notes with other LI TRIO
members.
The coming New Year brings hope for me that I can help LI TRIO
reach more of its goals in education, awareness, and spreading
the word about “The Gift Of Life” of organ transplantation.
This includes reaching out to current and new members, lobbying
politicians in Albany for legislative changes, continuing our
educational efforts through our High School seminars, and “singing
out” awareness at events with the TRIO Singers. My volunteering
efforts are tempered by my special on-going medical needs and
concerns but are rewarding for the significant contributions I
am able to make.
I try to keep in mind this quote from an unknown author: “Destiny
is the hand you are dealt; Free will is what you make of it.”
Dina
Grgas
Life was a
struggle from the beginning for Dina Grgas. She
was born with an extremely rare liver disease called Criggler-Najar
Syndrome Type 1. The condition was so uncommon that she was the
first diagnosed case in the United States.
At the time she was born in 1965, the idea of a liver transplant
was far-fetched. “The doctors were hoping that some kind
of treatment, such as gene therapy, would become available,”
Dina says. “But even today that’s still way off, and
they’re not even close to a cure for this disease.
In order to survive, Dina had to be kept under special fluorescent
lights while she slept at night from the time she was born. Custom-made
bulbs were placed over her bed, just a foot away from her body.
The lights helped keep the level of potentially toxic bilirubin
in her body down. For the treatments to be effective, she couldn’t
wear pajamas or sleep under covers, so her parents placed an extra
heater in the room to keep her warm in the winter, and an air
conditioner to keep her cool in the summer.
“My mother never got a good n ight’s sleep all the time
I had to sleep under the lights, because she worried that something
might go wrong,” Dina recalls.
During Dina’s childhood her family often took month-long
vacations to St. Thomas in the Virgin Islands. While that may
sound like a dream vacation to most, Dina had to spend nearly
every minute of daylight in the sun, as part of her treatment.
“If I wasn’t under the lights I had to spend time in
the sunlight. I used to feel like a plant,” she says.
As Dina grew in size the light treatments, indoor and outdoor,
weren’t as effective. As a result, Dina was continuously
in and out of hospitals, feeling sick much of the time. Her doctors
began to discuss transplantation as an option by the time Dina
was 10-years-old, but liver transplants at that time were still
highly experimental.
Instead, Dina continued to struggle and was constantly having
to be hospitalized. “My life was anything but normal. For
the most part I had been able to keep up with other children while
I was growing up, but in college I could only study part time
because of my health. The toxins were building up and that impaired
me.”
In 1989, when she was 24, she traveled with her parents to London,
England to explore a new liver transplant program. But when the
family arrived in London, they were disappointed to learn that
the doctors in the transplant center had changed their minds about
attempting a transplant. “They discouraged me from pursuing
a transplant by talking about the negative aspects of transplantation,”
Dina recalls. “It was very disappointing and frustrating
for all of us.”
A few months later Dina was back in the hospital with an infected
gall bladder, which had to be surgically removed. The surgeon
who performed the operation at New York University Hospital was
a transplant surgeon. He encouraged Dina to go for a transplant,
and notified Dr. Lewis Teperman, another transplant surgeon at
NYU, of her case. “Dr. Teperman told me I should get on a
transplant list as soon as possible. He asked me, considering
the condition I was in, why I hadn’t been transplanted already.
He said I was not only qualified to be listed, but was over qualified.”
Teperman assisted Dina in getting on a list.
Meanwhile, her health continued to decline. She became incoherent
and was placed on life support in an intensive care unit. “It
was the worst nightmare of my life.” She rallied and was
able to function minimally while the wait for a liver continued.
In January 1990 Teperman, now at the University of Pittsburgh
Medical Center, decided to have Dina flown down to Pittsburgh,
where she would be immediately transplanted as soon as a suitable
liver became available. Twice within a week organs became available,
but one was unsuitable for Dina and the other had been damaged.
Within a few days a third liver, this one suitable, arrived, and
Teperman performed the transplant that would save Dina’s
life.
Although she endured 12 hours of surgery, Dina awoke from her
deep sleep and almost immediately felt a remarkable change in
her condition. “I felt like a new person. The liver was functioning
perfectly. They were amazed because they never saw a body accept
a liver transplant so quickly.”
Within a few days she was walking around and in two weeks she
was home. “It felt so good to be able to sleep in a dark
room, under covers.” Dina went to work for her father’s
business, then established her own fast food business until 1992,
when she began taking graduate school classes in nutrition at
C.W. Post with a goal of becoming a dietitian. She recently was
approved for an internship program.
Ever since her transplant, Dina has kept in touch with the family
of the 17-year-old boy whose liver she received. There was a regular
exchange of letters, cards and phone calls. “I always talked
about going to Virginia to meet them,” she says, and last
September she got the chance.
“It was extremely emotional,” she says. “I’d
wanted so badly to meet them. There was nothing in the world I
wanted more than to give my donor family a hug and sincere “thank
you” for what they did for me.” Dina stayed in the family’s
home and even slept in the room that had belonged to their son
Chuck before he’d died in a auto accident.
“They took me to the site of the accident, and we went to
Chuck’s high school, where there’s a memorial plaque
with his name on it. Then we went to the cemetery where he’s
buried and I brought some flowers.” It meant a lot to Chuck’s
family to finally meet the person whose life their son had saved.
“They knew they made the right decision in agreeing to donate
their son’s organs. They could see how healthy I was, how
well I was doing and how appreciative I was.”
Dina also met Chuck’s best friend, who’d been sitting
next to him in the pickup truck. “It was difficult for him.
But he got some solace in knowing what his friend did and how
appreciative I was. She didn’t get to meet the man who was
driving the car, but learned that he was sober and driving responsibly
at the time of the accident.
Dina learned that just weeks before the tragedy, Chuck had mentioned
to his sister that he wished his organs to be donated if anything
happened to him. After the accident, when doctors in the hospital
determined there was no brain activity, Chuck’s sister remembered
what he had said. This made the decision much easier on his parents
when they were asked if they wished to donate.
Since receiving her second chance at life, Dina has spent much
time trying to inspire others with liver diseases and spreading
the word about organ donation and transplantation.
The memorable visit to Virginia was not the last for Dina. “I
plan to see them again. I really felt like I was going home when
I went there. It didn’t feel at all uncomfortable. I feel
truly blessed to have a donor family like this as a part of my
life, and strongly encourage any recipient to do this if they
can.”
Dina says she feels even more of a connection to her donor than
she did before. “He’s part of my identity,” she
says. “I feel as if he’s watching over me. I feel his
presence and I know I’m never, never alone.”
