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Long Island TRIO Member Profiles

Download our October/ November 2011 issue- LI TRIO Newsletter

Our meetings begin at 7:30 PM and are held at
145 Community Dr., Manhasset, NY.

We are pleased to present stories and profiles of members here at litrio.org..

Joe and Grace LaBarbera are dedicated volunteers who maintain LI TRIO's email tree and this is very much appreciated. Please meet our good friend and TRIO volunteer, Grace LaBarbera.

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 sent 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.

I'm writing this in order to help with any and all opportunities to educate people about organ donation, kidney disease, and the power we have to save lives.

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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.

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Mother crusades for organ donations

Claudia Grammatico

"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.

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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."

The Story Of The Greatest Gift

By Tom Bush

Twenty five years ago I knew that I'd one day need a kidney transplant because I had Polycystic Kidney Disease (PKD), and eventually I would reach end-stage renal disease (ESRD).
The years passed and my blood pressure slowly rose.
The number of drugs I needed to take increased and my creatinine level continued to rise well above normal. Soon it was time to start thinking about going on dialysis.
Along the way I learned of a support group called TRIO, and at the first meeting I attended I met a large number of people with various transplanted organs. I was amazed that transplants were regarded as routine, and tried to find out more about this option.

My wife Anne and I began contacting transplant centers to find out if I was eligible to go on a transplant list. In the process we learned about blood typing, cross matching, tissue typing, antigens, living-related transplants, and living-unrelated transplants.

After finding that the waiting list for a transplant was more than three years, Anne suggested that she would donate a kidney to me. Our blood type matched. We had a negative cross match, which is good, and a three-out-of-six antigen match, which is very good.

On Tues., Feb. 15, 2000 my son Paul and his wife Jen drove us to the medical center. At 9 a.m. Anne went to the operating room to have a laparoscopic nephrectomy (kidney removal). At 2:00 that afternoon I was told they were ready for me to go to surgery.

At about 7:00 in the evening I became aware of noise and lights, and realized I was in the recovery room! Then I remembered that I'd just had a kidney transplant! "How is Anne?" I asked, and I was told that she was okay. By 9:00 that evening Anne and I were in our separate hospital rooms.

The following morning my nurse said she would help me get up and walk. Ha! With a lot of help, I got up. Walk down the hall? You've got to be kidding. Back to the bed.
No walking this morning!

As I lay there I looked up to see Anne standing next to my bed. Great! This is too much. That night I got up and made it to Anne's room, and by Thursday Anne and I were walking the halls together, hand in hand. Soon after that we were back home.
I wish to thank my wife Anne for the greatest gift I will ever receive, that of a continued happy life together. But this is not the end of the story!

My new kidney worked fine for about four years. Then my numbers started to go up. A biopsy determined that I was in chronic rejection. That meant that my kidney was going to fail soon. In June of 2005 I became very ill. Anne took me to the emergency room. My potassium was out of sight. They did a quick hemodialysis and got it down to a reasonable level.

A few days later they removed my transplanted kidney, and I spent the next four weeks in the hospital. I was on hemodialysis for the next few months. In the summer I switched to Peritoneal dialysis.

I registered on the transplant list and it was estimated that the wait would be five years! Two years went by. On Sunday, Jan. 14, 2007 I got a call at 8:00 in the morning, when I was still in bed. It was the transplant surgeon. He said, "I have a perfect match kidney for you from Alaska. How long will it take for you to get to the hospital?"

I told him it would take two hours, and started on my way. As it was a Sunday we were there by 10:00 a.m. By 8:00 that evening I had a new kidney and was back in my room.

The next seven days were rough. The kidney took 30 hours to arrive, and because of this it took seven days to begin working. I was quite ill. Finally I started to feel better, and by the 12th day I was home.
It is eight weeks out now and I am feeling quite well. I will always be grateful to the family of my donor for making the decision to donate "the greatest gift."

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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."

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A Father's Valor

By Robert H. Seeback

My son Bobby sat across the kitchen table, fidgeting with the handle of his second cup of coffee. It was a substance his doctor had told him to drink in moderation. After a brief moment, he raised his head, and looking into the eyes of my wife Doreen and I, delivered a sentence that shocked us to the bone.
"Mom, dad, I have been given two months to live."

I immediately scanned his youthful face for some evidence of a joke, when suddenly the realization of it hit me like a freight train. He had fought so hard, so bravely.

"There is a little bit of hope though," he continued. "Dr. Koss told me that I am in congestive heart failure and that's why it's hard to breath. But, Dr. Nancy mentioned something about a heart transplant."

That was Bobby, always finding a ray of light in a hopeless situation. He had been through countless courses of grueling chemotherapy. He had lost his spleen, appendix and half a lung in staging the Hodgkin's Lymphoma that had invaded him to his soul.
After all else had failed, he spent months in isolation and finally survived a stem-cell transplant only to find that the treatments had destroyed his heart muscle. Still, his outlook was positive.

What unbelievable courage, I thought, as I tried to keep my composure. I asked about the heart transplant.
"I don't have many details," he said, "but basically they take someone else's heart and put it inside you. Then they give you medicine so your body doesn't reject it."

Looking back now as I hold my twin grandsons in my arms, I can remember the times when I carefully rolled him in a wheelchair, throughout the campus of Columbia Presbyterian medical center. We went from one doctor and one test, to another while they sought to find out if he was an acceptable candidate and if a transplant would benefit him in the end.

Then there was the telephone call at 5:30 in the morning on St. Patrick's day in 1996. When he excitedly told us from his hospital bed that a donor heart had come in that might be a match.

He survived that heart transplant, then met Nancy, who became his fiancee.

Later he developed osteoporosis and needed a total knee replacement. From where did he summon the strength to endure? Yet still, he managed to dance wildly at his wedding.

Gazing into the eyes of his sons Daniel and Jonathan, I thought about how lion-hearted they will be if they adopt only a fraction of their father's valor.
I will never forget the day when my son had come to me, and told me that his strength had come from me.

Written by Robert H. Seeback

The late Robert Seeback was the father of my friend of over thirty five years, and fellow Long Island TRIO member and transplant recipient Bobby Seeback, who speaks about organ donation emotionally and effectively to high school students on Long Island. Bobby received a heart transplant on March 17, 1996.

Thanks,

Mike Sosna

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It is with sadness that I report the passing of our beloved President, Artie Michaels whose energy and spirit set a tone and an example for me and so many others. I'm sending heartfelt condolences to Jo and to all of the wonderful family.

Artie Michaels

by Artie and Jo Michaels

My name is Arthur Michaels. On June 2, 1990, I underwent a Liver Transplant. Prior to my illness, I ran three (3) New York Marathons, in 1985, 1986, and 1987. In 1988 I was diagnosed with "sclarosing cholangitis". This is an autoimmune liver disease, which affects the livers bile duct. In January 1990, I was told that I would need to have a Liver Transplant if I was to live beyond the next year or two. In March 1990, my condition had gotten worse, and on June 2, 1990, I received my first transplant at Mt. Sinai Medical Center, NYC. Two and one half (2 1/2) years later I ran the Boston Marathon, beating the Cardiologist on the Mt. Sinai Transplant Team. I ran it again in 1994, this time Dr. Squires beat me. In 1995 I was not able to run the Marathon, however in 1996 I ran the Boston Marathon in April, the New York Marathon in November, and on December 28, 1996, received my second liver transplant.
I have participated in the Transplant Games since 1993. First in the International Games, which are held every odd number year, and the last three (3) National Transplant Games, which are held on the even numbered year.

After each Transplant, I returned to my work as Production Manager of the New York Law Journal. I finally retired at age 65, on December 31, 1998, on the insistence of my wife. So now I still run, play golf, and make a general nuisance of myself around the house. I plan to participate in this year's Transplant Games held in Disney World Florida, from June 21st to the 24th.

None of the above accomplishment would have happened if someone with a generous and unselfish heart hadn't donated the Organs and Tissue of a loved one who passed away. My family and I are very grateful….

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From Apprehension To Appreciation

By Karen Paulick

Life has new meaning for me since my liver transplant in September 1996. I had hoped when I was first diagnosed with Primary Biliary Cirrhosis in 1986 that medical technology would come up with a cure for the condition, so I wouldn't need a transplant.
I wanted to learn everything there was to know about this disease, so I joined the American Liver Foundation. This group was extremely supportive and helped me to deal with this new life-threatening problem.
At first, I must say I thought I would beat this "thing." I did everything I could to improve my set of circumstances, including eating well, getting lots of exercise, and maintaining a positive attitude. I even tried some of the techniques taught by Dr. Bernie Siegal, such as relaxation and imaging. These all worked to help me deal with my situation as best as I could, but nevertheless the condition of my liver continued a slow downward spiral.

I had been an elementary school teacher for 15 years, when my son was born in 1989. At that time I decided to leave teaching. Some of the symptoms of the disease, including fatigue and itching, were becoming unbearable. I decided that what energy I did have should be devoted to raising this little "miracle" of mine. I continued to see my doctor in New York, and we tried new medicines. Still, I was hopeful that I could put off getting a transplant for as long as possible.
My problems escalated in the spring of 1995. I was spending a lot of time going to the doctor for stomach problems and was diagnosed with ulcerative colitis. This was causing me to lose weight and to have even less energy. Finally, in February of 1996, I was advised by doctors to get to a hospital to be evaluated for a liver transplant. I chose the University of Pittsburgh Medical Center, and went there immediately.

Going through all the tests and evaluations was time consuming. I spent several days in Pittsburgh having my body examined and going through lots of blood work! (I hate blood work!) When I left there I knew that the time was getting close. I prepared my family and hoped for the best.

I got the call that a donor liver was available, and the operation was performed on Sept. 8, 1996. I was a success, things went smoothly, and I was released from the hospital within two weeks.
Now that I've experienced a transplant and its benefits, I really believe that receiving an organ transplant is truly a miracle. I think about it often and marvel that doctors are able to give new life to someone. I feel that I have energy I never knew was possible. I am active and am exercising regularly and enjoying life to its fullest.
If anyone asked me if I would I go through the surgery again, I'd say, "Absolutely!" I wish I had done it sooner. Before my transplant I truly thought the experience would be much worse. I really haven't had any side effects from the medicines except for some weight gain from prednizone. Everyone tells me I look wonderful. This is a pleasant remark to hear since I looked and felt quite sick before the operation.

Now I try to spread the word about organ donation to everyone I meet. I believe I have an obligation to my donor and donor family to make other people aware of organ donation. I'm a member of Long Island Trio but unfortunately never get to the meetings due to the distance from my home.

Since I can't do much on the meeting level, I do all that I can to spread the word about organ donation to friends, family and anyone who will listen. I had a magnetic sign made for the back of my van that says, "Make a Miracle - Be an Organ Donor" and has the TRIO tree of life logo. I hope people will be affected when they see it. Sitting in traffic on the LIE should be good publicity.
It's my hope is everyone knows that donating organs saves lives. It sure saved mine!
Karen Paulick lives with her husband Walter and son Jeffrey in Riverhead, New York. She volunteers at her son's elementary school, teaches Sunday school and loves to sew.

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Transplant Pioneer Looks Back

By Bob Levin

I received a kidney transplant in 1958. Back then, transplantation of major organs was the stuff of science fiction. In the course of my treatment, I attended the Harvard Medical School and as a result of that I can claim, figuratively, part of the Nobel prize in medicine.
Let me explain. In the summer of 1958, at my wife's insistence, I went to a local internist for a physical examination. One of my symptoms was a very high blood pressure, with subtle puffiness in the face. I was busy starting a dental practice and raising a new baby daughter and paying off a new mortgage.

I knew that I didn't feel well and blood and urine tests confirmed my worst fears. The diagnosis was chronic glomerular nephritis and both of my kidneys were in a dangerous state of health. Years later I was to find out that my internist was at a loss as far as treatment was concerned until his wife mentioned the transplantation procedures being done at the Brigham Hospital in Boston. She had read about them in a popular magazine.

To be transplanted in those days before cyclosporine and drugs for hypertension, you had to have an identical twin. My twin brother volunteered immediately over his wife's objections--and I do not blame her for that. We were tissue-tested at Huntington Hospital by means of mutual skin grafts. They were positive, and we were asked to come up to Boston.
I went first, leaving my wife and baby at home. I was studied for two weeks and then my brother arrived. Further skin grafts were done and he had Xrays and other tests to determine the condition of his kidneys. After two more weeks, we got the go-ahead for the operation.

When I arrived at Brigham Hospital, where students and most interns and residents were Harvard people, I felt confident though very anxious. The first important doctor to see me there was the chief of plastic surgery, Dr. Joseph E. Murray. He looked me over and I could see in his blue eyes he was deciding on the efficacy of the new kidney's location.
At that time there had been only eight successful transplants and I was hoping to be number nine. On the transplant team were illustrious scientists such as Dr. John Putnam Merrill, who developed the modern day dialysis machine and was professor of medicine and physiology, and Dr. J. Hartwell Harrison, professor of urological surgery and very much a Virginia gentleman.
December 4, 1958 was transplant day. Since many of this newsletter's readers are transplant receipients, health-care professionals and others familiar with transplant, I will not bore you with details about surgical prep and the operating rooms. However, in the four weeks following the operation, doctors had to re-operate to reattach the ureter to the bladder, then do a third operation to remove both of my diseased kidneys.

The major difference in treatment then was that I had to lie on my back for one month to make certain the graft was not disturbed. All told, I was in the hospital for three months. After the success of my surgery and while I was still at the hospital and starting to walk, I met someone who had also received a kidney from a fraternal twin, but he had to be irradiated to reduce his immune response to his twin's organ. His case was also successful.

Following the transplant, my only claim to fame was a front page picture in Newsday with my loyal wife at my side leaving the hospital. She had come up to Boston to cheer me and had taken a job in the billing office because we needed the income. She was in Boston for eight weeks and my mother was able to watch the baby at a cousin's house, for which I'll be forever grateful.
I went back to Brigham for five subsequent years for check-ups and was back for the twenty-fifth anniversary dinner at the Copley Square Hotel in honor of the first successful kidney transplant, involving identical female twins from Oklahoma.
About four years ago, Dr. Murray received the Nobel Prize in Medicine for his research and surgical work. Unfortunately, Dr. Merrill died in a boating accident some years before. Dr. Harrison, I regret to say, died from bladder cancer, an unfitting end for a wonderful urologist.

The groundbreaking research at the Brigham was financed by the A&P Huntington Hartford Foundation, so that I did not have a medical debt to pay. I am grateful to the researchers and especially to my twin, who lives and golfs in Pinehurst, North Carolina. His was a gift for life as you all know, which has enabled me to have a second daughter, now a pediatrician, who has given me two grandsons.
I continued working for forty more years until retirement. I am still in contact with Nobel Laureate Joseph Murray and I went to the new Brigham Hospital recently to see the gold medal on display in the lobby...for which I was given no credit.

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Please meet Gerry and Connie Higins.

By Connie Higgins

On August 21, 1998, my husband Gerry and I were lying on gurneys in pre-op at Columbia Presbyterian Hospital, waiting to go into surgery where my right kidney would be transplanted into Gerry. As we think back to that moment, both Gerry and I are amazed that the predominant feelings we had were joy and wonderment.

First, we were thrilled that I, a non-related donor, was a three-antigen match with Gerry. This opened the door for him to realize the dream of a healthy kidney and a life free of dialysis. Second, we were humbled by the wonderment of the whole transplant process. To realize that the surgeons could remove an organ from my body and transplant it into Gerry's, without any significant threat to myself or my future health, seemed nothing short of a miracle.

As I was wheeled into the operating room, I passed Gerry's gurney. Everything began to move so quickly. I was placed on the operating table. The room was cold and I began to shiver not only in coldness but in anticipation. This was it. It was really going to happen. As the oxygen mask covered my face, a great sense of peace enveloped me and I fell asleep.
The next memory I have is waking up in recovery surrounded by my loved ones and nurses who were assuring me the surgeries went well, Gerry was fine, and all looked good. When I woke up the next morning in my hospital room, my first thought, as had been the case each day for weeks, was about the upcoming transplant operation. Then suddenly I realized we had already gone through it. The elation I felt was immense.

Everything leading up to the transplant had happened so quickly. Gerry had been fine, never suspecting any kidney problems until February 1998. He called me at home to tell me that a blood test and urinalysis indicated that he had a serious kidney problem. It hit like a lightning bolt. What could this mean and what would happen next?

From knowing virtually nothing about kidney function, dialysis, and transplants, we soon became familiar with words like nephrologist, creatinine, antigen, and fistulas. The doctors told us Gerry was quickly approaching end stage renal disease.
In May, Gerry had a kidney biopsy which ended our hopes that medication could alleviate or at least slow down the deterioration of his kidneys. By the end of June, Gerry began dialysis treatments.
We asked his doctor about the possibility of a kidney transplant, and she said it was definitely something we should consider. But we were faced with the depressing fact that the wait list for a kidney in New York was on average four years. I asked the doctor if I could be a potential donor. Just from seeing Gerry's expression, I knew the idea of my giving him a kidney was unthinkable to him. But to me, it was more unthinkable that I would not donate a kidney to this man that I loved, so I kept asking questions about being a donor, and Gerry began to accept the idea.

Soon after I began a comprehensive evaluation to determine if I could be Gerry's donor. The fates were smiling down at us. My husband of less than four years and I were a favorable antigen match. The elation we felt as we learned we were compatible was indescribable. I cried all the way home in pure joy.

When we went to Columbia to meet with the transplant team, we were surrounded by caring, compassionate, and gifted "angels." From the surgeons to the dialysis and transplant nurses to the residents to the transplant coordinators, we felt as if our case really mattered. They explained complicated medical terms and procedures to us in ways that we could understand.
An ongoing series of informational meetings, held once a week for eleven weeks, proved enormously helpful not only in the knowledge we received but in the support we got from meeting others in the same situation as ourselves. We also listened to a series of audio tapes that encourage relaxation and healing before, during and after the transplant operations. We both believe this helped us better prepare for the surgery and the recovery that followed.

For Gerry and I this has been a profound life experience. So important through all this has been our love for each other. In addition, the support of Gerry's sons, Chris and Jeff, as well as other family members, friends, and colleagues helped us deal with the ups and downs of kidney disease on a daily basis. We've become closer as a family and realized how much it means to be together. We've also learned how important it is to keep focused on the goal of returning to good health. When we first found out about Gerry's kidney disease, we met a man who had been on dialysis for four years before a match was found. He said he felt he'd had two choices: he could live his life fully and happily in spite of having kidney disease, or he could be a diseased person whose energy focused on the unfairness of having the disease. He chose the first path and he believed it made all the difference.
Gerry and I have also came to realize the enormous benefit of adopting a mind, body, and spiritual perspective when dealing with things like illness, surgery, and the healing process. To embrace all sides of who we are was a blessed lesson to learn.
We both were emotionally transformed by this entire experience. From Gerry's perspective, transplant recipients are the luckiest people on earth when they are given the precious gift of life. Gerry jokes that he doesn't even care to buy lottery tickets anymore; he's already won the lottery. And from my perspective, being fortunate enough to donate a kidney to the man I love was the most profoundly joyous experience of my life.

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Please meet Howard Fields:

By Bob Violino

Organ transplant recipients who have experienced the Transplant Games speak about the event with the same sense of awe that you often hear when Olympic athletes talk about performing on the world stage of athletic competition.
While Olympians frequently refer to the daily grind they've had to endure and the dedication they've needed to get to the top of the amateur athletic world, for the transplant recipient athletes the road to the Games is arduous in ways that many Olympians couldn't even imagine. Participation is limited only to those who have received organ and tissue transplants, and many have survived life and death struggles.

The Transplant Games over the years has drawn participants of all ages, walks of life, economic status, and physical condition. They have come from all parts of the country. What links them all in a common bond is the desire to show themselves and the world that they have overcome enormous health challenges and are able to participate in sporting events--and even excel at those events.

This is clearly reflected in two of the goals for the Games stated by the organizer of the event, the National Kidney Foundation: demonstrate that transplant recipients can and do return to full and productive lives, and dramatically illustrate that organ transplants give people a second chance at life.

Last summer the Games held in Columbus, Ohio, drew an estimated 1,500 transplant recipients who competed in sports including swimming, track and field, volleyball, basketball, cycling, golf, and tennis. Many brought home medals. All brought home memories that are indelible, such as the sight of donor family members taking part in opening ceremonies.
Members of Long Island TRIO attended the events, some as participants others as observers. Howard Fields was both. A kidney recipient, Howard competed in the badminton, racquetball, table tennis, volleyball, and basketball events and won bronze medals in badminton and racquetball. He also viewed the emotional opening ceremonies when donor families helped introduce the donor awareness postage stamp, and watched in awe as fellow recipients performed in a variety of events.
"It was great to watch people compete in events and not worry if they were winning or not, and to see the joy in peoples' faces when they were able to complete a race or event," he says. "It's so inspiring to know people can accomplish things they never thought would be possible when they were sick."

Howard, a vice president at J.P. Morgan, was born without a left kidney. The condition taxed his one kidney, which gradually lost function over the years. By 1994 his single kidney had deteriorated to the point where he needed to begin dialysis. He was placed on a waiting list for a transplant, and doctors told him to expect a wait of two to four years for a kidney.

In January 1995 a friend and co-worker of Howard's experienced a personal tragedy, the death of his 18-year-old son in a skiing accident. The co-worker and his family made the decision to donate his organs, and made a specific request to have one kidney go to Howard.

Howard was filled with grief when he learned where the kidney had come from, but nurses explained that it was the family's wish, and the fact that their son was helping to provide him with a new chance at good health provided some needed comfort to the family. The transplant was a success and Howard was able to go back to work and enjoy much improved health. There were some setbacks including several rejection episodes, but Howard now enjoys much improved health and is thrilled to take part in events such as the Games.

To help show his enormous gratitude to the family of his donor, Howard dedicated his performance to them and gave them one of his bronze medals. "Presenting my donor family with one of the medals was the best way I know how to show my deepest appreciation for the gift they gave me," Howard says. He plans to attend future U.S. Transplant Games and is considering attending the World Transplant Games, scheduled for Aug. 29 through Sept. 4 in Tilburg, the Netherlands.
"Participating in the Transplant Games is a wonderful way for a recipient to show that transplantation really works," he says.

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Jim Conte

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LI TRIO Member - Legislator Judy Jacobs

The Long Island TRIO Annual Rose Garden Ceremony

An event that honors those who have given life to others.
By Cindy Springsteen

Legislator Judy Jacobs and LI TRIO President Michael Sosna at the LI TRIO Donor Rose Garden Ceremony-Photo Credit- Nassau County Legislator Judy Jacobs and The Long Island Chapter of Transplant Recipients International Organization

The Long Island TRIO Annual Rose Garden Ceremony honors donors and donor families, those who have given others a new life.

Nassau County Legislator Judy Jacobs attended the ceremony, which was hosted by The Long Island Chapter of Transplant Recipients International Organization. The event took place at Eisenhower Park Sept. 17, 2011.

Healthcare profressionals, members of Long Island TRIO, the NY Organ Donor Network, as well as organ and tissue recipients, and the donor families were the guest speakers at the ceremony.

Mike Sosna, president of LI TRIO welcomed and honored the donors and donor families as he explained that "LI TRIO is a non-profit all volunteer organization committed to improving the quality of lives touched by the miracle of transplantation through support, advocacy, education, and awareness. We keep in mind today that there are currently over 112,264 people waiting for the Gift Of Life.

" I find it concerning that more than 90% of Americans say they support organ donation, but only 30% know the essential steps to enroll in a Donor Registry, " he said.

Sosna continued: "The Donor Families made a decision to save lives at what could have been the most challenging and difficult time in their lives. As volunteers, we try to volunteer helping with The New York State Donor Registry in order to help spread the message and positive effect of The Gift Of Life. We try to do what we can to thank donor families in a sincere manner although we know that words are just not enough. As recipients, we try to also thank our heroes with deeds such as making a commitment to volunteering as much as we can and telling our story to others as a way of promoting the importance of saving lives with organ donation."

Jacobs' speech was one that also gave a personal touch of experience on transplants. "This is always such a moving and inspiring event and it is humbling to be in the presence of such outstanding individuals," she said.

"My brother in law is a kidney/liver transplant survivor. I had the honor of meeting two young girls. One, Lauren Shields is a heart transplant survivor and the other, Gillian Cohen, is a liver transplant survivor.

Legislator Judy Jacobs added that "Words cannot adequately thank the Donor Families for their compassion at such a difficult time, nor can words express the awe one feels for those who have triumphed to live fruitful lives following the transplant they so desperately needed."

To visit the Donor Rose Garden you can find it in Eisenhower Park, adjacent to the Women's Sports Pavilion Parking field 6/6A.

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LI TRIO member Lauren Shields

Long Island Herald Article

Long Island TRIO's re-dedication of donor rose garden In Eisenhower Park

L.I. needs more organ donors
Local man waits, hopes for a new heart
By Shannon Koehle for the Long Island Herald

A Rose Garden rededication ceremony to honor Long Island organ donors took place last Saturday in Eisenhower Park.
Approximately 300 people turned out for the 16th annual ceremony — which years ago attracted just a handful of people.

"These donor families are unselfish in a time that is tragic," said Mike Sosna, president of the Long Island Transplant Recipient International Organization. Sosna became involved with TRIO after receiving a kidney from his father, and was named president of the organization in 2006.

"We're here today to honor donors and donor families who have given the gift of life," he said.

One 11-year-old recipient who attended the ceremony is actively trying to change lives. Lauren Shields, who spoke at the event, was infected with a virus that attacked her heart, said her mother, Jeanne. Lauren underwent a successful heart transplant in March 2009.

COURTESY LONG ISLAND TRIO
Lauren Shields, 11, is a heart recipient, and spoke at the Rose Garden Rededication on Saturday.

While Jeanne Shields said she is grateful that someone chose to donate their heart for her daughter to use, she added, "When you're on the other side and waiting, it can be the most helpless feeling in the world."

According to Sosna, 18 Americans die every day waiting for a donor organ, and 1,257 people had organ transplants in New York in 2010. Given those numbers,

Lauren and her mother decided to get involved in the effort to increase donor registration on Long Island.

New York state has among the fewest registered organ donors in the nation, said Sosna, and a main reason is that when residents are asked to enroll in the donor registry on the form at the Department of Motor Vehicles, a response is not required.

Now, the Shields family and TRIO are working to implement Lauren's Law. The legislation would require residents to state whether or not they want to be an organ donor.

Jeanne Shields explained that it is important to have the words "not at this time" on the form for those who choose not to participate rather than just "no," because otherwise doctors would not be allowed to ask their families about organ donation.

COURTESY LONG ISLAND TRIO Mike Sosna, Gillian Cohen and Lauren Shields give a rose to each donor family honored at LI TRIO's Donor Roise Garden Cremony

While the proposed law easily passed the State Senate's Transportation Committee in April 5, and was approved by the full Senate on Lauren's birthday, April 13, TRIO came up against unexpected opposition in the Assembly, and will return to the Legislature in a few months to try again.
Another important organ donation measure, signed into law nearly three years ago, enables New Yorkers to sign up to be organ donors online, Sosna said. But despite its approval, he added, the law has yet to be implemented.

COURTESY LONG ISLAND TRIO

Red and yellow roses were distributed to donor familiesat the Rose Garden Rededication.

Hundreds of New Yorkers are in need of organs, one of whom is East Meadow resident Jeff Whitman. Whitman was born in 1966 with a heart block and a murmur. Due to the relatively primitive technology of the time, doctors decided to simply monitor his condition.

Whitman, who moved to Connecticut and lived there until recently, received a pacemaker when he was 23, to stimulate his decreased heart rate. Years later, when his heart problems worsened, he received a biventricular device to improve his heart function.

During that procedure, doctors accidently perforated his heart, but they were unaware at the time that they had done so. For Whitman, the pain and chest pressure got worse as months passed. His doctors finally realized that his lungs and heart were filling with fluid and determined the cause. He was told he would need a heart transplant.

Whitman has nearly died a number of times, enduring heart rhythm problems that caused the device in his chest to shock him as it attempted to establish a normal rhythm, an infection of an implanted ventricular assist device, known as an LVAT, allergic reactions to medications and induced comas.

He was first placed on a transplant list in March 2009, when he received the LVAT, but he was removed the following year, when his wife was re-diagnosed with colon cancer. Prospective donors must have support at home in order to stay on the list. Last June, his wife died.

Living in a rehabilitation facility after another stint in the hospital, Whitman was looking for friendship and support when he reconnected with a former high school friend, Denise Tristano Pascalis.

"He needed a home and support to get back on the list," said Pascalis. She opened her arms and her home to him.
Two weeks ago, East Meadow residents welcomed Whitman home with a gathering at Miller's Ale House. He is now a patient at Montefiore Medical Center and — now that he has support — is hoping to get on the facility's heart transplant list within the next few months.

"Good things have to come your way at some point," said Pascalis.

To learn more about LI TRIO, visit www.litrio.org.

To contact Jeff Whitman, email him at xcaliber36x@aol.com/ Comments about this story? SKoehle@liherald.com or (516) 569-4000 ext. 287.

Source:

http://www.liherald.com/eastmeadow/eastmeadow/stories/LI-needs-more-organ-donors,35801?page=1&content_source=

LIHERALD.com

Lauren Shields and her wonderful family are Long Island TRIO members who have a desire to volunteer and help in any way they can. They are very generous with their time and I think you'll find that as you get to know Lauren, you'll be speaking with a very special young lady who has received the Gift Of Life and wishes to give back every day.

Lauren's Law is named after 10 year old Lauren Shields who received a heart transplant in March 2009.

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Please send member stories to Mike Sosna- webmaster, newsletter editor and chapter president:     TRIO is represented by the Tree of Life. With its intertwining branches, the Tree of Life symbolizes the intertwining of the lives of two human beings, the donor and the recipient,through the Gift of Life. It depicts growth and new life and reinforces the new beginning transplantation gives to the recipient. E-Mail Tree litrio@optonline.net LI TRIO Webmaster: Mike Sosna email address mike@sosproductions.com Copyright © 1995-2012 LI TRIO Long Island Chapter LITRIO.org All rights reserved