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Would you like to read about our newest LI TRIO member?

Michael is a Nassau County Police Officer. His wife Jen is a teacher and her former student donated one of his kidneys to Michael. Here is the story is Michael's words:

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

Please remember that:

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

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.

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Our friend and Long Island TRIO member Mack Steinbock has received the Gift Of Life
Snowstorm liver transplant is a miracle for Long Island woman
BY Samuel Goldsmith
DAILY NEWS STAFF WRITER
Tuesday-March 2nd 2010, Liver transplant patient Maryann Steinbock sits alongside members of the NYPD and Nassau County police force and her medical team from Montefiore Medical Center.
Four police departments, two helicopters, one plane and dozens of plows teamed up to get a Long Island woman to her liver transplant surgery - just in the nick of time.
Cancer patient Maryann (Mack) Steinbock's doctor called late Thursday night to tell his patient her year of waiting was over. A liver was finally available - but there were daunting logistical problems before the operation could occur.
The liver was in Buffalo, the patient was in Nassau County, the doctors were in the Bronx, and more than 20 inches of snow were piling up outside.
"We were very concerned," said Dr. Milan Kinkhabwala, head of the liver transplant program at Montefiore Medical Center in the Bronx. "We only had a 12-hour window to operate and it was going to be very close."
The organ was harvested at 4 a.m. Friday, meaning doctors had just under seven hours to get everything ready and still have enough time to complete the five-hour surgery.
"When I got the call, I couldn't believe it," said Steinbock, 59. "I live all the way out in Atlantic Beach, and I had to get to the hospital, and there was all this snow."
Hospital officials in the Bronx got on the phone with the NYPD, who coordinated with Nassau cops and the highway patrol to give Steinbock and her husband a seamless trip across three counties to Montefiore.
"It was like being in a movie," Steinbock said. "All of a sudden, the police come, and there were these cute motorcycle guys. Everybody stopped traffic and there was even a helicopter."
"The drive normally takes an hour," said her husband, Corey Steinbock, 67. "This time it took 35 minutes. I clocked it."
Nassau cop Rob Prince was tasked with driving the police SUV with Steinbock inside.
"She was very calm," Prince said. "We were a little nervous trying to get there, so she started talking about the Mets to calm us down."
The liver was flown in by plane and helicopter, after getting an escort from state troopers, and arrived at the hospital just before Steinbock did. With time winding down, doctors went to work.
"Once we had everything in place the surgery went very well," Kinkhabwala said. "She's doing very well and should be going home later this week."
Corey Steinbock said the quick improvement in his wife's health is remarkable.
"Last week she was pale and all shriveled up. She looked like a ghost," he said. "Now she's like a blossoming flower."
Maryann Steinbock plans to buy tickets for all of her rescuers to accompany her to the Mets' Opening Day at Citi Field. After that, she'll start planning a larger than usual Passover dinner.
"You're all coming for Pesach," she said to the officers at Montefiore yesterday.
"And this summer I want to ride the cute officer's motorcycle."

Hey
I'm really proud of this article and wanted to share it with you. This is the first time where I think something I did can really make a difference in someone's life. Enjoy and let me know what you think!

Love,
Sam

By Samantha Shepard
Morning News
sshepard@florencenews.com

FLORENCE — On Jan. 30, Michael Sprauve went for a physical at Shaw Air Force Base so he would be eligible to try out for the Wilson High School football team. The doctor signed off on his form because he seemed to be a healthy 16-year-old boy. His blood pressure was slightly elevated, however, and blood work was ordered.

An hour after Michael and his mom, Machell Sprauve, left the doctor’s office, they received a phone call that would change their family’s life forever.
The nurse said Michael’s creatinine level was so high, it indicated renal failure. She said they would have to have his blood work redone as soon as possible.
“I was so confused and panicked,” Machell said.
She took Michael to the nearest hospital, McLeod Regional Medical Center in Florence, and relayed the information the nurse had given her.
On Feb. 4, less than a week later, Michael was diagnosed with nephronophthisis, a genetic, chronic kidney disease that affects children. Nephronophthisis is characterized by fibrosis and the formation of cysts in a specific region of the kidney.
In Michael’s case, those cysts have depleted his kidney function to 30 to 35 percent and landed him on the approved list to receive a kidney transplant.
For Michael, a junior at Wilson, the news came as a shock. For his mother and father, Clinton Sprauve, a retired member of the Air Force, it was the beginning of a trying journey for their family.
“It’s very demanding,” Machell said. But being a math teacher in the same high school where Michael is a student has made it easier, she said.
“He has to take seven-and-a-half to eight-and-a-half pills per day, at different times,” Machell said. “Because I work right there, I can check in on him or be there in case of an emergency.” Michael’s prescriptions include blood pressure medications and supplements to help manage the disease until he receives a transplant.
His lifestyle has changed a lot, Machell said, but he does not let this disease get in the way of being a teenager.
“There’s no reason to complain. It’s not going to help,” Michael said. Instead, he is determined to still do the things he loves.
Since he is not able play what he calls “rough” sports, Michael runs track and plays golf for Wilson.

Also, because he had to stop eating junk food and has to watch everything he eats — from weighing his meat to make sure it is not more than the 7 ounces a day his diet allows or staying away from foods that are high in protein, phosphorous, sodium and potassium — he started cooking healthy meals for his family.
In 10 months, Michael lost 30 pounds, but not his spirit for life.
When he graduates from Wilson in the spring 2011, he said, he hopes to attend Johnson & Wales University in Charlotte to study the culinary arts and eventually open his own restaurant. “I want to make separate menus for others that have my disease or a disease like diabetes,” Michael said.
But his interests and aspirations don’t stop there. He is a member of Tiger Production, the honors chorus at Wilson. He loves to sing, perform and write songs.
Michael and his friends also started a singing group called Star Money Crew, and have recorded five songs and compiled them onto a CD they will start distributing and selling next month.
The Sprauves are working with the Children’s Organ Transplant Association (COTA), a charity organization dedicated to organizing and guiding families and communities in raising funds for transplant-needy patients. Since its start in 1986, COTA has assisted more than 1,300 families with fundraising to meet transplant-related expenses — things not covered by insurance — from almost every state and every economic situation.
COTA helps to guide the family and their volunteers through every step, including organizing and training the campaign committee, planning successful events and activities, working with the media and finding multiple sources of funding. Ruby Charles, the volunteer organizer of COTA fundraising for Michael, describes him as a role model. “I see what he does in church, I see what he does in school. He wants to move on in high school and to college. We want to help him make his dreams come true,” Charles said.
The Sprauves, with the support of teachers and the whole Wilson High community, hold different fundraisers throughout the year, collecting donations at local businesses in coin boxes and organizing a basketball tournament and yard sales. So far, they have raised $800, with the goal of raising $50,000 toward offsetting Michael’s medical expenses. “It’s a slow process. We started this summer,” Charles said.
For now, the Sprauves are doing everything they can to keep their spirits up and to ensure this disease does not define who Michael is or somehow come between him and his dreams for the future. “It’s just a waiting game,” Machell said. “We try to take it one day at a time,” she said.

.....

Drug side effects a key factor in reduced quality of life for kidney transplant recipients

People who have kidney transplants need longer-term support than most friends, relatives or even healthcare professionals realise, according to a study of 160 patients published in the December issue of the UK-based Journal of Advanced Nursing.
Researchers surveyed 55 patients who had undergone surgery in the last year, together with 105 who had had surgery in the last one to three years at the Vanderbilt Transplant Center in Tennessee, USA. They wanted to see if there was any difference in how they perceived factors such as their health, the side effects of medication to prevent rejection of the new organ, social support and quality of life.
"We discovered that, in general, patients reported higher levels of social support in the first year after surgery than they did one to three years after their transplant" says lead researcher Dr Hongxia Liu, who is now based at the College of Nursing at the University of Cincinnati, Ohio, USA. "They also felt more positive about what they could achieve and their ability to cope in the first year after surgery.
"Our findings point to the need for more social support in the later transplant period, together with interventions to alleviate bothersome medication side effects and further research on how to manage them.
"We would also like to see further interventions by renal transplant nurses to help patients cope more effectively in the post-transplant period and make them feel more positive about their health and what they can achieve."
All the patients had a functioning kidney transplant at the time of enrolment, which averaged 4.5 months since surgery in the first group and 26.3 months in the second group.
Participants averaged just under 48 years of age (range 18 to 75), 54 per cent were male and there were no statistically significant differences in age, gender, marital status, race or education level between the two groups.
Sixty per cent of patients who took part in the study had received their kidney from a living donor. There were no statistically significant differences in types of dialysis before transplantation, duration of dialysis, donor type or immunosuppressive medications between the two groups.
However there was a statistically significant difference in the level of transplant-related hospitalisation, with 48 per cent of people in the one to three year group having been hospitalised, compared with 27 per cent of the people who had received surgery within the last year.
The patients' self-reported health-related quality of life was measured using the SF-36 scale, which ranges from zero to 100, with higher scores indicating a more positive result. This showed that people in their first year after surgery has a slightly higher overall physical qualify of life (43.29 versus 42.46) and a slightly higher overall mental quality of life (50.94 versus 50.04) than people who were one to three years post transplant.
Although the overall scores did not show significant differences, researchers found more noticeable differences when they looked at the individual elements that make up the two categories.
The patients' average health-related quality of life declined in relation to emotional role (down 6.43), general health (down 5.31), physical function (down 5.81), vitality (down 4.48), mental health (down 3.03) and bodily pain (down 2.17). But it improved slightly when it came to physical role (up 1.01) and social functioning (up 0.31).
Other key findings included the fact that patients used coping strategies such as active coping, emotional support, positive reframing, acceptance and religion coping more in the early days than one to three years after transplant.
Overall average scores for the Perceived Health Competence Scale (30.23 out of a possible 40) and the Personal Resource Questionnaire (87.16 out of a possible 105) showed that people's perceptions of what they could achieve with their current health and the support they received was high.
However, both levels were higher in the year after surgery than one to three years post transplant, falling from 32.0 to 29.31 and from 90.33 to 85.58 respectively.
Transplant recipients who experienced a larger number of symptoms were more negative about their health and reported that their physical and mental health-related quality of life was lower than those with less symptoms.
The side effects of immunosuppressive medication had statistically significant effects on selected psychosocial variables, such as how they judged their health, what they felt they could achieve, how well they coped and their health-related quality of life.
"Renal transplant patients face many new challenges after transplantation and need to develop new coping strategies and renal transplant nurses can play a key role in that process" says Dr Liu.
"Our research shows that they need to offer more social support to recipients in the later transplant period.
"They also need to provide patients with advice on post-transplant care, immunosuppressive medication and self-care skills, together with initiatives that enhance their positive appraisal of their health, their belief in what they can achieve and their ability to cope effectively."

Source: Effects of clinical factors on psychosocial variables in renal transplant recipients. Liu et al. Journal of Advanced Nursing. 65.12, 2585-2596. (December 2009) DOI: 10.1111/j.1365-2648.2009.05111.x

Long Island TRIO- Organ Donation Awareness Month Legislative Initiatives and Events

The Long Island chapter of TRIO is very lucky to have dedicated volunteers making all of the following initiatives possible. We are pleased to team with our coalition partners inclusive of Senators, Members of the Assembly, NYODN, and Transplant Centers as we travel to Albany to help save lives and truly make a difference.

Long Island TRIO is commemorating Organ Donation Awareness Month as we participate in over a dozen events in April, 2010. Our festivities and events will be followed by a 27 April, 2010 trip to Albany, New York where we have scheduled appointments with New York State Senators and Members of the Assembly in their Capitol District offices.

Our chapter will obtain New York State official proclamations that proclaim April 2010 to be forever known as and referred to as "Organ Donation Awareness Month" in New York.

We will be meeting with Assemblymen and Senators who are working with Long Island TRIO and our coalition partners in order to improve the New York State Donor Registry Of Consent. We will also ask for support from Senators who have promised to meet with us as we teach them about the important of New York State accepting "Electronic signatures" as legal consent in order to make an anatomical gift. This will help our chapter's volunteers who work throughout the year signing up new donors to the Donate Life Registry. We also have a legislative initiative that will ensure that the "Registry choice" is not skipped and that New York State will require all drivers (when renewing their licenses) to either check the box and register (continued on our Upcoming Events page.

Long Island TRIO will present the 2010 Organ Donation Awareness Night at Citi Field as the Mets welcome the Phillies on August 15, 2010.

Long Island TRIO honored Donors and Donor Families at our LI TRIO Donor Rose Garden in our deeded area of Eisenhower Park on Long Island in New York.
LI TRIO also honored one donor in particular who donated one of her kidneys to her student, who is a member of Long Island TRIO.
At the ceremony, Long island TRIO arranged for Sentator Kemp Hannon to present one of New York State's highest awards, "The Liberty Award" to Jennifer Jennifer Mazzotta-Perretti, a teacher, who is also the special education director at the Hebrew Academy of the Five Towns & Rockaway.
"She received her award during a rededication of a donor rose garden planted and maintained by the Long Island chapter of Transplant Recipients International Organization, an organ donation advocacy group."
Source: Sunday's Newsday, September 27, 2009

Long Island TRIO Annual Donor Rose Garden Re-dedication Ceremony
For Immediate Release
From Mike Sosna, Long Island TRIO

Transplant Recipients International Organization
Long Island Chapter

Re-dedication ceremony for the Organ Donor Rose Garden, planted and maintained by volunteers at the Long Island chapter of Transplant Recipients International Organization (TRIO).

The annual ceremony honored those who have given others new life.

Long Island TRIO presented: “Organ Donation Awareness Night” at CitiField. This event was held on August 19, 2009.

Long Island TRIO Member Receives Kidney From His Teacher Story featured in Newsday September 17, 2009 A Lesson For Life Jennifer Mazzotta-Perretti never expected that, after giving students an assignment to write about their experiences doing good deeds, she would have the opportunity to do one herself. One student in her summer creative writing class at Nassau BOCES in Wantagh posed the question: Would you give life to someone else if you didn't have to give up your own? She said yes, she would. Then he asked if she would donate one of her kidneys - to him. Again, she said yes. At the time the student, Kevin O'Brien, didn't need a transplant. Later, when he did, he remembered her answer and asked her again. She pledged that she would, not expecting it to work out because the odds were against two unrelated people being a match. But after a blood donor card arrived in the mail stating that her blood type was O positive - the same as his - she felt compelled to undergo more testing and learned that their match went beyond blood. That's when the single mother of one from Levittown prayed - and decided to go through with the donation. "It was an awesome feeling that I was going to help this kid with more than reading and writing," said Mazzotta-Perretti, 32, who is also the special education director at the Hebrew Academy of the Five Towns & Rockaway. On Sept. 3 at Columbia University Medical Center, Mazzotta-Perretti fulfilled her promise and gave 19-year-old O'Brien one of her kidneys. O'Brien said that after years of feeling tired, he immediately felt energized. "You wake up and you're like, 'Whoa, is this for real?' " said O'Brien, of Oyster Bay. "I feel better than I have in quite some time." When he was 3, blood drawn from a finger prick led to the discovery of an obstruction in one of his ureters - tubes that connect the kidneys to the bladder - that was causing urine to back up and damage the right kidney. Within months, surgeons implanted the tube deeper into the kidney to prevent the reflux. Two years later, the same procedure was necessary for his left kidney. But the surgeries were a temporary fix: Doctors said he would eventually need a kidney transplant. A decade later, on July 1, 2005, O'Brien received a kidney from his father, Neil. But soon after, that kidney began to fail because the drugs he was taking to keep his body from rejecting the new kidney made him susceptible to a virus, which damaged the kidney. His mother, Heidi, wasn't a match for her son and tried to arrange a kidney swap: She would donate a kidney to someone she did match - and who, in turn, would provide a willing donor who was a match for Kevin. That strategy didn't pay off, and Kevin's name was put on a waiting list - where it could have taken him eight years to get to the top. "We were devastated," said Heidi O'Brien, 52, of Oyster Bay. "We had done everything we could do." Then Mazzotta-Perretti called her and said she would give Kevin her kidney. Heidi O'Brien said she was "in awe that a person would do that for my child." "We are so grateful to Jennifer," she said. To pay Mazzotta-Perretti's favor forward, Kevin O'Brien said he wants to work with scientists to clone human organs. He said he also wants to encourage people to donate the organs of their deceased loved ones and pledge to donate their own organs when they die. "Give the organs to someone who can use them," he said. But first, now that his health is improving, O'Brien will have to finish his junior and senior years of high school. Looking back on his quest for a donor, O'Brien said the best thing he did was put his teacher on the spot. "You gotta not be afraid to ask for what you need," he said. "I needed a kidney and I have it." Here is a photo of our chapter's 2009 Organ Donation Awareness Night at CitiField-August 19, 2009 The Long Island TRIO Singers performed the National Anthem at this Atlanta Braves Vs. New York Mets baseball game at CitiField. New York Mets Award Ceremony on the field at Citifield as Long Island TRIO helps publicize the importance of saving lives with organ donation.   A.904-A/S.3910 Source: http://www.hanys.org/ Governor David Paterson has signed into law a bill (A.904-A/S.3910) that sets an order of priority for who makes decisions about organ donation when someone has died. The bill amends the Anatomical Gift Act to allow a broader list of people to make donation decisions for individuals who have, in advance, authorized such decision making. The bill responds to situations where family members oppose organ donation even though the deceased person wanted to be an organ donor. That situation is common when relatives or partners are in grief over the loss of their loved one. Given the shortage of organ donors in New York, the bill seeks to increase the availability of organs for transplant by adding three new categories of people who can make donation decisions: someone who is a designated health care proxy, someone who has been chosen as a disposition-of-remains agent, or a domestic partner. The bill then establishes an order of priority for who determines organ donation. HANYS and Healthcare Trustees of New York State (HTNYS) are collaborating on a new initiative to encourage members to promote organ donation awareness within their facilities and communities. HANYS and HTNYS are working with the New York State Alliance for Donation to provide hospitals, health systems, and continuing care systems across the state with brochures and posters that contain educational information about organ donation. The goal is to increase organ donation awareness across the state over the next several years and engage health care provider employees and members of the community in the process.   After following the above link, you will be able to enter your Zip code in order to contact your Representative. Sincerely, Mike Sosna, President Transplant Recipients International Organization- Long Island Chapter Chairman, Public Policy- TRIO International 5440 Little Neck Parkway Suite 4H Little Neck NY 11362 Tel: 516.902.8111 Email: mike@sosproductions.com Website: www.LITRIO.org Remember and Rejoice   My father and I were invited to speak at and participate in this wonderful event honoring Donors and Donor Families. Our friends at our sister chapter- TRIO Manhattan held the wonderful "Remember and Rejoice" event at St. Patrick's Cathedral on April 4, 2009. We hope you will join us next year at this very special annual Ecumenical Service honoring and remembering donors and their families. -Mike Sosna Recognizing The Brave And Selfless Act of Organ Donation Update:Stephanie Tubbs-Jones Congressional Gift of Life Medal Act (HR 7198). I’m pleased to report that the House of Representatives and the Senate has passed the Stephanie Tubbs Jones Gift of Life Congressional Medal Act. These bills direct the Treasury department to design and produce a commemorative medal that the Department of Health and Human Services will award to organ donors or to a surviving family member. Enactment of this legislation would have no cost to the Federal Government. The medals will be funded by charitable donations and organizations including TRIO and its membership. -Mike Sosna   A Letter from Senator Hillary Clinton to LI TRIO How the Spanish donor system works Long Island TRIO In The News: This article appeared in Suffolk Life on April 16, 2008 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@gmail.com LI TRIO Webmaster: Mike Sosna email address mike@sosproductions.com Copyright © 1995-2010 TRIO Long Island Chapter LITRIO.org All rights reserved