Monday, January 31, 2011

TEDMED 2010: 'Superorgans' Could Revolutionize Transplants
Source: Huffington Post

Imagine: Two lungs are removed from a person and replaced with the lungs of another human being. And the body survives. It's a medical marvel, said Shaf Keshavjee, M.D., a thoracic surgeon and director of Toronto Lung Transplant Program, at TEDMED.
But, he added, "It's not a perfect science yet." Organ transplantation can be a rocky road, for both patients and doctors. The recipient's body often sees the new organ as a foreign object and attempts to reject it.
"What I'd like to do is really stretch your mind, to see where we're going in the future with organ replacement," said Keshavjee. "I'm going to talk about engineering superogans."
Superorgans are genetically modified organs that are better prepared to deal with the stress of the transplant process. Keshavjee and his team figured out a way to keep an organ alive outside the body, at normal temperature, long enough to assess it and treat it.
"We've really taken the system, totally, and turned it around," said Keshavjee. Here's how it works:
To demonstrate, Keshavjee rolled a machine out onto the TEDMED stage with a live pig lung on it -- swelling up and down with breath. He invited a few audience members to touch it. The cutting-edge technology gives doctors time to identify any specific problems with the organ, treat it with targeted gene therapy, cell therapy, drugs and medication, and then transplant a known product into the recipient.
"Now this looks like science fiction to you, but it's not," said Keshavjee. "We're doing this today. We have transplanted 30 patients using this technique -- using lungs that we wouldn't have used."
Learn more about this new technology, and see what a pair of breathing lungs look like, below.

Modesto, Ceres women connected by same heart defect
By Kerry McCray | Medesto Bee

At first glance, old friends Amanda Schulte and Dawn Contreras couldn't be more different.

Amanda, 26, of Ceres is a bit of a fashionista, reclining on her parents' couch wearing black Coach boots. She's a talker, chatting about everything from plans for her wedding to her dream of becoming a pastry chef.

Dawn, 23, of Modesto is a T-shirt-and-jeans girl. She's a wife and stay-at-home mom of a bouncy 3-year-old. Usually too shy to be the center of attention, Dawn gets up her courage to sing in front of the congregation at church.

The friends, though, do have something in common. They were born with the same heart defect. Amanda underwent a heart and double-lung transplant in the summer. Dawn is waiting for a transplant, her health deteriorating each day.

The two talk about little else.

"We both know the anticipation," Amanda said, "we both know the fear.

"And when Dawn gets her transplant, I'm going to feel even more connected to her."

That's hard to believe. The two finish each other's sentences as they talk about how they were diagnosed with a potentially fatal heart problem — pulmonary hypertension — as babies.

Amanda says her mom knew something wasn't right when she brought her home from the hospital. Baby Amanda was perspiring, not eating well. At the two-week checkup, the pediatrician listened to Amanda's heart and sent the family to a pediatric cardiologist.

After many tests, the family was advised to bring Amanda, then a toddler, to the University of California at San Francisco Medical Center, where she underwent heart catheter and lung biopsy procedures.
'A long time to prepare'

Doctors told Amanda's parents that she would need a heart and lung transplant someday.

"So we've known," said her mom, Tracy. "We've had a long time to prepare."

Dawn's story is similar. When she was 2 months old, her mother took her to the doctor, who listened to her heart. Something didn't sound right. The family was referred to Oakland Children's Hospital.

Two weeks later, when they pulled into the parking lot for their appointment, Dawn's mother glanced at the back seat.

"I was purple," Dawn said. "They took me straight to the emergency room."

Dawn underwent open-heart surgery. At age 1, she had closed-heart surgery, in which surgeons make a small incision, typically in the ribs, and attempt to repair the heart enough to delay further surgery until a child is older. At 13, she had a heart valve replacement.

Doctors told Dawn more than a year ago she would need a heart transplant. The left side of her heart is flawed, so fluid backs up into her lungs. The idea is to find her a heart before her lungs are so damaged that they need to be removed, as happened to Amanda.

Dawn and Amanda met when they were 10 and 13 years old, respectively. They were at a friend's birthday party. Everyone else was in the pool swimming. The two girls were sitting on the pool deck. (Their heart problems prevent them from exerting themselves physically).

The girls talked and discovered just how much they had in common: the same heart defect; a fascination with the band 'N Sync; crushes on Justin Timberlake.

They kept in touch on the phone for a while, then lost track of each other during high school.

Dawn fell in love with music. She played guitar and sang with the Worship Team at Calvary Temple. She graduated from Calvary Temple Christian School in 2006.

Amanda fell in with a bad crowd, ended up transferring schools and worked hard to graduate with her class after being absent from school for months at a time because of her health.

A trust fund has been set up to help with the costs of Dawn Contreras' impending heart transplant. Donations may be made at any Bank of the West branch.
At A Glance

People awaiting transplantation and transplant recipients are encouraged to contact the California Transplant Donor Network ( and become volunteers, which is a way to meet others who have received transplants and reach out to the community.

About organ and tissue donation:

• Organs are allocated nationally based on a complex medical formula that is established by transplant doctors, public representatives, ethicists and organ recovery agencies.
• The United Network for Organ Sharing maintains the list of patients waiting for a transplant.
• Organs are allocated based on blood type, recipient size and medical need.
• On average, 18 people die every day because an organ doesn't become available in time to save their lives.
• The need for organs is greatest among minorities because of increased health issues such as diabetes and hypertension, yet minorities are under-represented on the registry because of myths, misconceptions and a general lack of awareness.
• An organ donor can potentially save up to eight lives and improve the lives of up to 50 more through tissue donation (skin, bones, tendons and ligaments, blood vessels, heart valves and corneas).

Ways to become an organ and tissue donor:

• State your wishes to become a donor through the Department of Motor Vehicles when renewing or signing up for a driver's license. A person can check "yes" on the form and his or her information will be uploaded to the California Donor Registry. The person will receive a pink dot on his or her license.
• Register online at ( in Spanish). There are nearly 8 million registered donors on the Donate Life California Registry.

Common myths about organ and tissue donation are:

• "My religion doesn't support donation" — Fact: All major religions support donation (the pope is a registered donor) and donation is seen as the ultimate act of kindness and charity.
• "I won't be able to have an open-casket funeral" — Fact: Organ procurement is done with great care and respect for the donor, and traditional funeral arrangements are not affected by donation.
• "I'm too old/have a pre-existing condition" — Fact: Criteria for who can be a donor change constantly. If you would like to help someone who needs organs and tissues, please sign up and don't rule yourself out. Medical professionals will determine suitability at the time of death.

Source: California Transplant Donor Network
The Race to Donate Life: Registration is Now Open!

The Washington Regional Transplant Communityhas announced that registration is now open for the second annual “Race to Donate Life,” where all proceeds directly benefit the Washington Regional Transplant Community’s awareness programs for organ, eye and tissue donation.

This family-friendly event is a timed 5K run/walk festival with festivities taking place at Rock Creek Park (Picnic Grove 24) on Saturday, May 7, over Mother’s Day weekend.

Runners/Walkers can register online. Registration closes at 6 p.m. on May 6 and there is no option for race day registration. The entry fee is $20 until April 11 and $25 thereafter.

For more information, visit their Facebook event page.

Sunday, January 30, 2011

A life saved, a life to give

On March 10, 1996, Pensacola native Charnita Grandison was a cook in the U.S. Army, toiling away in a field kitchen in Bosnia.

Suddenly, a burner began to leak fuel. The fuel caught fire and exploded.

With her skin burning, Grandison dove from the kitchen onto the ground outside the trailer.

"A man I was stationed with took his jacket off and put the fire on me out," recalled Grandison, 43, who now lives in Fort Lee, Va.

She remained hospitalized for 30 days after the accident and spent another month in recovery. In the next four years, she underwent 13 reconstructive surgeries.

If it were not for the aid and the courage of her fellow soldier, Grandison knows her injuries would have been much worse, and possibly deadly.

Now, Grandison has a chance to pay it forward.

On Valentine's Day, she will donate a kidney to her niece, Kimberly Pinkney, a 32-year-old Pensacola resident and certified nursing assistant at Specialty Center of Pensacola.

Where others might describe fear of invasive surgery or parting with an organ, Grandison exhibits a modest excitement when she's asked to think about what she'll do in the coming weeks.

"I'm excited to be blessed enough to do it," she said. "A lot of people who want to do it can't do it."
Life-Changing News

Pinkney never dreamed her doctor's visit last February would amount to much.

Having had high blood pressure for most of her life, she thought she'd be checked out, given medication and sent her on her way.

They took her blood. They performed tests. She waited.

The news wasn't good.

A doctor told her that her kidneys had failed. She was rushed to the emergency room.

"My life changed in one day," she said.

The next day, she started nightly dialysis treatment to keep her alive.

Pinkney remained hospitalized for weeks before returning to what was her new normal life.

In August, she visited the University of Alabama at Birmingham Medical Center to begin her quest for a kidney transplant. Doctors told her to make a list of potential family members who might be willing to donate.

"It was a very scary thing," said Pinkney's mother, Beverly Johnson. "Why did this have to happen to her?"

Finding A Match

Many of Pinkney's family members suffer from ailments that would rule them out as potential donors.

So, despite the willingness of many of them, Pinkney thought it would be hard to find someone fit enough to give up a kidney.

Grandison, who received a medical discharge from the U.S. Army in 2000, now works as a military contractor teaching new soldiers cooking skills.

When asked to consider donating, she didn't hesitate.

Much like the soldier who offered up his jacket to stamp out the fire that burned her, she understood that an unselfish act can preserve life.

"I was only 28 years old when I had my accident, and that was a life-changing experience that was really, really hard," Grandison said. "I don't know a whole lot about dialysis, but I know it's not an easy process to go through. And to be 32 and have to do that the rest of your life, I couldn't see that for her."

Grandison was the first person tested, and she was a match.

"After that, there was no need to test anyone else," Pinkney said. "It was unreal to me. I'm still, I can't believe it."
Pillar Of Strength

Grandison and Pinkney have been close for years.

The young niece calls her aunt the strong center of her family. She remembers a childhood of sleep-overs at her house.

She also remembers the horrific injuries and the pain her aunt endured after the accident.

Pinkney was a 17-year-old Pensacola High School student when the explosion occurred.

"I remember when she came home and she was at my grandma's house," Pinkney said. "I remember she didn't have any skin. It didn't look like her. My little cousin was scared of her, but she was the one telling everybody not to worry."

Last August, Pinkney knew she could turn to her aunt.

"When something's going on, she can fix it," Pinkney said. "It's not surprising to us that she would be the one to do this for me. She didn't think twice about it. She was like, 'What do I need to do to find out if I'm a match?' "

On Valentine's Day, Grandison and Pinkney will travel to Birmingham for the transplant.

While recovery won't be easy, Pinkney said she will look to her aunt for inspiration and a feeling that everything will be OK.

"For everything that she's been through, it's a blessing," Pinkney said. "Somebody saved her so she could be here to save me."
Nursing honor society hopes to educate with April event

HAMMOND | Joan Dorman can list one story after another of how organ and tissue donation has touched people she knows, and she knows shes not alone.

That's why Dorman, president of the Mu Omega chapter of Sigma Theta Tau nursing honor society at Purdue University Calumet, and the rest of the honor society are planning an April event during National Donate Life month.

"We're hoping to raise awareness on the part of the public and dispel some myths," said Dorman, a clinical associate professor

At 6 p.m. April 6 at Alumni Hall on campus, the honor society will host a panel discussion followed by small group breakout sessions with each panelist, Dorman said. The panelists will come from a variety of areas relating to organ donation, including Michael Henderson, the hospital development coordinator of the Indiana Lions Eye and Tissue Bank; David Brady, administrative director of Transplant Services at Loyola University Medical Center; and Alice Jenkins, with the organ and tissue donation network Gift of Hope. The panel will also include organ and tissue donation recipients.

"(Organ and tissue donation) has a tremendous impact," Dorman said. "Everybody knows somebody. I have a good friend who donated a kidney to her stepson. It's been 15 years now ... he has a whole new lease on life."

Dorman said she was unsure if event attendees would be able to sign up at the event to become donors, but said there will at least be information about how to sign up.

This is the first event the honor society has hosted that is both to educate its members and the public, Dorman said.

Friday, January 28, 2011

DON'T MISS THE FUN - Saturday, January 29, 2011

Modeled after Dancing with the Stars, the evening will feature leaders from each of Wisconsin's top medical and research institutions as celebrity dancers, paired with professionals from Fred Astaire Dance Studios. The dancers' performances will pay tribute to the second chances that are made possible through the miracle of transplantation and the gift of organ donation.

Proceeds from this special event will be used to support donation and transplantation awareness activities and programs of the
National Kidney Foundation of Wisconsin.

Event co-chairs Gary Grunau and Joanne MacInnes invite you to attend the Spotlight on Life Gala! SPOTLIGHT ON LIFE was created to shine the spotlight on the 1700 men, women and children in Wisconsin who are still waiting for a life-saving transplant, and to draw attention to the critical need to increase organ, tissue and eye donation.

The National Kidney Foundation U.S. Transplant Games® allows recipients who have received a life-saving heart, lung, liver, bone marrow, pancreas or kidney transplant to celebrate their second chance at life, and to honor the donors and family members who made that chance possible. Wisconsin proudly hosted the Games in 2010, where ballroom dancing was introduced as the newest sport.

Wisconsin also launched an online donor registry in 2010. For more information or to renew your commitment to be a donor, please visit:

JANUARY 29, 2011

InterContinental Milwaukee
139 East Kilbourn Avenue
Grand Salon

Call the hotel reservation line at 414-935-5943 to reserve your room or book online.

Underground, secured parking connected to the hotel. Entrances to parking garage on both Water Street and Kilbourn Avenue. Arrive after 5:00pm and depart before 8am the next day, parking will be $8.

Emcee: WISN 12 News Anchor Kathy Mykleby
Madison Hospitals Receive National Award for Organ Donation Efforts, Wisconsin

Madison - The U.S. Department of Health and Human Services Organ Transplantation Breakthrough Collaborative recently recognized St. Mary's Hospital and UW Hospital and Clinics with a National Medal of Honor for their work to improve organ donation rates in Wisconsin.

Representatives of both hospitals were honored at a ceremony in Madison on January 20. They were among 307 hospitals in the country who received this national honor.

To receive this recognition, hospitals must achieve a 75 percent donation rate, meaning that at each of these hospitals at least three-fourths of the people who were eligible to be an organ donor became one.

St. Mary's served seven donors which resulted in 17 organs for transplantation, and UW Hospital served 40 donors resulting in 114 organs donated, from October 1, 2008 to March 31, 2010, the timeline reviewed for the 2010 honor.

The UW Health Organ Procurement Organization (OPO), which provides donation services at 104 hospitals in Wisconsin, Illinois and Michigan, had 11 hospitals in their federally designated service area that were eligible to receive the Medal of Honor.

"Our partners at these hospitals are committed to the life-saving gift of organ donation," said Jill Ellefson, executive director at the UW Health OPO. "These professionals recognize the important role they play in serving patients and their families to ensure their gift of life can be honored."

In Wisconsin, almost 1,700 people are currently on the organ waiting list with 40 percent under the age of 50, and 31 under the age of 18.

Because organ donation happens in hospitals throughout the state, the UW Health OPO team, which received a gold medal of honor for their work, travels to hospitals to provide education, leadership, clinical practice and inspiration on organ donation and transplantation best practices.

"Our relationships with our hospital partners are imperative to our state's success," says Ellefson. "Without each hospital's commitment to both ongoing education and sensitive patient communication, the state's organ donation rates would decline and many more people would die while waiting for an organ."

Organ donation facts:
Last year the UW Health OPO worked with 115 donor families, resulting in 443 organs transplanted.
Nationally, more than 110,000 people are on the wait list for a transplant, and a new patient is added to the waiting list every 11 minutes.
Every day in the U.S., 19 people die waiting for their organ transplant.
Up to eight lives can be saved for every organ donor.

To legally authorize organ, tissue and eye donation, register on Wisconsin's Donor Registry at .
Even if you already have an orange donor dot on your driver's license, if you haven't registered online or said yes to donation at the DMV since March 29, 2010, please register online today. Tell your family that you support donation, and have registered as a donor.
Importance of Organ Donation
Source: 9 & 10 News, Michigan

When someone donates their organs, it can save up to 8 people. Include skin and tissues, that number jumps to about 50. Right now Michigan is has one of the lowest numbers of online donors, as the country tries to get everyone in the system. 

Michelle Dunaway explains how life changing that decision can be in today's Medwatch report.

Unique stories share the same message about giving life
By COREY L. TURNER | Humble News
At just 2 years old, Michael Leon received a gift that gave him an opportunity to be a member of the band, student council, Boy Scouts and various volunteer opportunities.

Thanks to his life-saving heart transplant, Leon has been able to not only experience life, but encourage others about why becoming an organ donor is so important to survivors like him.

Now nearly 14 years later, the sophomore at Kingwood Park once again finds himself of the waiting list patient for a second heart transplant.

“It’s hectic,” Leon said. “When you go to school, you never know when you are going to get that call. You can get it tomorrow, you can get it today, I could get it right now. It has been nerve wrecking and it’s been scary.”

Leon has been back on the waiting list since May 2010 and his family is hopeful that call will come.

According to Donate Life Texas, a new name is added to the national transplant waiting list every 13 minutes. And every day, 17 people die waiting for a life-saving organ transplant.

But like Leon, many people are also saved each day thanks to a decision someone made to be an organ, tissue eye donor.

Kingwood Middle School Principal Bob Atteberry is one of those people and some would call him an unusual candidate.

He was known to most of his friends and family as an athletic and healthy guy before his life changed years ago.

“I was probably the guy that was most unlikely to have a problem to my peers and my family,” Atteberry said. “At the time I found out I had heart problems, I ran about six to seven miles a day. I was one of those folks that was addicted to running and competitive athletics.”

But one day while playing basketball with students and coaches as a student teacher at Westfield High School the incident happened.

“I was playing basketball and having a great time,” Attebery said. “I was running down the court and I felt something I had never felt before. I felt like I was going to pass out. I remember going to my knees and that is all I remember.”

Attebery’s next memory is waking up in the ER at the hospital, surrounded by friends and family. A week later, after a series of test, he received word he had a mass on his heart. He had surgery to remove a tumor the size of a tennis ball and received a defibrillator and pacemaker which he says worked fine for 15 years.

But doctors suggested he get on the transplant list and he was added after a series of test.

“A lot of people don’t realize how hard it is just to get on the transplant list,” he said. “You have to go through a lot of test and they really try to weed out the people who have health issues or aren’t going to take care of themselves.”

It proved to save his life following a second incident while eating dinner with his family during the Thanksgiving holiday six years ago.

“The doctor told me I wasn’t leaving the hospital without a transplant,” he said. “That was a life changing event. I remember laying there thinking to myself, everything is going to be fine.”

Attebery says he remembers the day he received the news that a transplant had been found and his life had once again been saved.

“I had three young boys at the time and I can’t tell you how much I appreciate the people who have to make the decision,” said Attebery of people who choose to donate. “The first week after I got home, I really went through a hard time of trying to understand why I got to live and somebody didn’t.”
Creating Awareness

LifeGift is a nonprofit organ procurement organization which recovers organs and tissue for individuals needing transplants in 109 Texas counties in North, Southeast, and West Texas. It is one of several organizations that helps saves lives around the country.

Elvia Valdez, works with LifeGift, and she is on a mission to help people like Leon and to educate more Texans on the importance of becoming organ donors. “My job is full of highs and lows,” she said. “I am a new mother and you learn to appreciate the beautiful things in life.”

In 2005, Texas lawmakers passed legislation that created a state registry of donors. The 2007 Legislature renamed it the Glenda Dawson Donate Life-Texas Registry, in memory of Representative Dawson’s contributions to promote organ, tissue and eye donation in Texas.

Today, 1,374,258 Texans are listed in the registry, but Valdez says that number is far too low.

“This is ok, but with 17 million-plus licensed drivers in the state of Texas, we know we can do much better,” she said.

She says having more people like Leon and Attebery to help educate others is important to help people understand more about the donating process. Valdez says one of the most important thing for families to do is have the conversation with love ones.
Other side of coin

Few people understand that more than Kingwood businessman Fred Rosenberg

Along with his wife, Karen, Rosenberg sat down with his two kids and informed them that their parents wanted to be donors if something were to happen to them. And during that discussion, both of their sons also expressed the desire to be donors as well.

A year later, that conversation proved to be helpful.

In 1992, his son Mike was riding in car with friends from Kingwood High School when their car was struck by a drunk driver on Kingwood Drive. Rosenberg’s son, along with three other Kingwood High School students, were injured when the car T-boned their vehicle at 70 MPH. Mike and one of the other passengers were life-lighted to the emergency room that night.

Following a series of tests, Rosenberg and his wife were informed that their son had no brain activity. That news led to the hardest decisions Rosenberg has ever had to make.

Once his son was taken off life support, he was asked if Mike was going to be a donor or not.

“Making the donation of Mike’s organs was easier because we discussed it. We knew what his wishes were,” Rosenberg said.

As a result, Mike saved four people’s lives thanks to his heart, his kidneys and his liver.

“If it wasn’t for Mike’s decision to a donor, those people might not have lived,” Rosenberg said. “It was so important that we discussed. Not everyone is going to be a donor, but all of us could be a recipient and it is important to discuss that the family. It is important to know that is something does happen, everybody knows what the wishes are. We miss Mike, but we also feel his life was important to four people and we will never regret that.”

Myths and Facts

Following are the facts about donation provided by LifeGift.


If I am in an accident and the hospital knows that I want to be an organ and tissue donor, the doctors will not try to save my life.


Organ and tissue recovery takes place only after all efforts to save your life have been exhausted and death has been legally declared. The medical team treating you is completely separate from the transplant team. The organ procurement organization (OPO) notifies the transplant team following consent to donation.


Donation will mutilate my body.


Donated organs and tissues are removed surgically, in a routine operation similar to open-heart surgery. Donation doesn’t prevent an open-casket funeral or viewing.


I don’t need to tell my family that I want to be an organ and tissue donor because I have it written in my will.


By the time your will is read, it will be too late to recover your organs and tissues. Register to become an organ and tissue donor today, and share your decision with your


I am not the right age for organ or tissue donation.


Organs may be donated from newborns to about age 75. There is no age limit for tissue donation. At the time of your death, the appropriate medical professionals will determine whether your organs are usable.


Only the heart, liver and kidneys can be transplanted.


Needed organs include the heart, kidneys, pancreas, lungs, liver and intestines. Tissues that can be donated include the eyes, skin, bone, heart valves and tendons.

For more information or to become a donor, log onto
West Michigan readers share stories of organ donations and transplants

When we ran a series of stories about organ donations and transplants, some readers contacted us and said they would like to share their stories, as well. Here are two accounts of how organ donation and transplants touched the lives of two West Michigan families:

Teen was first adult organ donor in West Michigan

Story contributed by Bob and Carol Benedict, of Grand Rapids:

Jim Benedict was a very active young man who loved life. An active member of Youth for Christ and a teen counselor.

Jim enjoyed sports and the outdoors. He played baseball, golf, downhill skiing, snowmobiling, hunting and fishing. He always had a smile on his face, and was always on the move, looking for something to do and helping others.

In the early 1980s, medical researchers were transplanting a baboon heart into a baby. When Jim saw that on TV, he said to his mother (Carol Benedict), "That's so sad they have to resort to animals because people don't donate their organs. Why don't they? When you die, the organs will only waste away in the ground. We should donate our organs to help others."

On June 21, 1985, shortly after graduating from high school, Jim was involved in an auto accident that left him with a fatal brain-stem injury. (The accident was not due to drinking or drugs.) Carol, being an active nurse at Butterworth Hospital, knew many of the doctors helping Jim. Carol told the doctors of Jim's previous discussion and his wishes to donate his organs.

At that time in medical history, staff members were hesitant to the suggestion of Jim's heart donation due to the number of chest tubes placed in him. They felt that the heart was damaged.

Carol was insistent. She asked them to check Loyola University School of Medicine Hospital, where successful transplants had been done.

The Loyola doctors told Butterworth doctors that the heart could be used.

Jim had been kept stable for the past three days with lots of prayers and hard work. On June 23, 1985, with the consent forms being signed by Jim's brother, David (who was 15), his father, Robert, and his mother, Carol, "the gift of life" started and Jim became the first major organ donor in West Michigan. He helped at least four people -- one in Illinois and three in Michigan.

We are very proud of Jim and his unselfish act of giving and kindness (as he always was) to others.

Domino transplant

Story contributed by Sandy Kiel, of Jenison:

Carl and I have four children. The youngest two were born with a very rare metabolic disorder called Maple Syrup Urine Disorder (MSUD). What this meant for them was that their body was lacking the enzyme to process protein, so the normal diet is toxic to the brain.

Jenna (our 3rd child) was born in February 1991 and was the first in Michigan to be diagnosed by newborn screening since they had added the test in 1987. With no cure, the only way to manage MSUD is a very low-protein diet (2 to 6 grams of protein a day) and special a formula with artificial proteins.

Jenna did well on the diet, attending normal school. However as puberty hit, a young girl's body needs less protein, and she was constantly "medically intoxicated". The very little amount of protein she would eat (in fruits and vegetables) would keep her from thinking clearly. Thankfully, the University of Pittsburgh began performing liver transplants on MSUD patients in 2004.

In July 2007,Pittsburgh performed the first pediatric Domino transplant on a 9 year old boy.

Jenna received her transplant call on Oct. 15, 2007 at age 16. She was the second Pittsburgh pediatric domino transplant and the first teenager. Jenna received a liver from a young mother who passed away from a brain aneurysm. In turn, Jenna donated her liver to an 18-year-old boy with cystic fibrosis, saving his life.

As confusing as this sounds, that worked because Jenna's liver works fine -- it just does not process protein. Since the liver is such a workhorse, a new liver would give her body the ability to process protein and eliminate the constant threat of brain damage. But everyone else has enzymes all over their body that process protein. So, her liver could be used in another person, and in fact was very healthy.

Today, both Jenna and her liver's recipient are living their dreams of attending college: She's at Michigan State University, and he's at Auburn. They have stayed in touch and are friends, as we spent a lot of time together while recovering in Pittsburgh.

Last October, we celebrated her third Liver Birthday. We continue to be thankful for the gift of life that she received and the gift that she was able to pass on. Each October, we celebrate by encouraging others to sign up as donors.

It makes us very sad that Michigan has such a low percentage of donors. In fact, Jenna hit the MSU campus this year signing up students, and we signed up family, co-workers, and church members.

Jenna's dream is to become a voice for the success of organ donation -- she's been on both sides!
Organ donor saves two family members
By Lee Filas | Daily Herald

Dona Nelson said her husband’s death this month was definitely a tragedy.

While she misses him tremendously, the Libertyville woman said she takes some solace in knowing James Nelson’s death helped saved the lives of two members of her family who received his donated organs.
“It really makes me wonder if there was another plan for Jim,” Nelson said. “It really is ironic how it all worked out.”

Jim Nelson, 63, died after slipping on the ice and hitting his head at his construction job in Schaumburg on Jan. 19. Within a week, doctors determined his kidneys and liver were perfect matches for two relatives — her brother, Ed Geraty, and one of Jim’s distant relatives — Dona Nelson said

Geraty, 55, began kidney dialysis about a month ago. Doctors had told him that without a transplant, he would need dialysis three times a week for the rest of his life.

“We were all lining up to be tested for a match, and Jim and I were teasing each other that we would both be the ones that matched,” Dona Nelson recalled. “I figured I would be a match because I was his sister, but Jim was adamant that he would be the match. He absolutely knew it would be him.”

Before either could be tested, Jim Nelson died.

“It was just one of those strange accident that happen now and then,” she said. “Doctors did what they could to save him, but he unfortunately died.”

Officials with the Gift of Life Organ Donor Program moved quickly to match organs to patients in need.

Twelve hours after Jim’s death and during the matching process, Geraty’s name appeared on the organ donor list, he said.

“From there, things moved exceptionally fast,” Geraty said from his home in Grayslake. “Gift of Life and Loyola Medical Center asked me to come to the hospital for a dialysis treatment last Thursday and then, if everything was looking good and Jim’s kidney was deemed a match, I would be in the operating room first thing Friday morning.”

At the same time, Jim’s daughter — Dona’s stepdaughter — asked to have another distant relative tested to see if the second kidney and a portion of Jim’s liver were compatible.

They were.

Debbie DeVito, a donation coordinator for Gift of Hope who serves as a liaison at Advocate Condell Medical Center in Libertyville, said no statistics were available to show how frequent a double match would be in a direct donation situation like the one the Nelsons faced.

“However, I can say it really is amazing to have two people from a single family be matched like that,” DeVito said. “It really is not a common thing.”

Geraty had the surgery Friday, Jan. 21 and was released from Loyola the following Monday, just 48 hours after receiving the kidney.

He said doctors told him the kidney is working perfectly.

“I am sitting here right now because of the gift from my brother-in-law,” he said. “Unfortunately, the gift came as a result of his death, but the organ I received is definitely a positive of the whole situation.”

Dona Nelson said she has heard through her family the second transplant also was successful.

In the end, she said, it was her brother’s illness that prompted Jim Nelson to sign the back of his driver’s license to become a donor.

“Jim would have moved heaven and Earth to help anyone he could,” Dona said. “It’s only fitting that, now, in his death, he is still helping people.”

Photo:  Ed Geraty with his sister, Dona Nelson, with photos of her husband, Jim. Jim Nelson died recently and his organs were donated, including a kidney given to Ed.  GILBERT R. BOUCHER II | STAFF PHOTOGRAPHER
OSF Saint Anthony honored for organ donation, Illinois

ROCKFORD — The U.S. Department of Health and Human Services has recognized OSF Saint Anthony Medical Center, 5666 E. State St., with a National Medal of Honor for the sixth consecutive year for its work to improve organ donation.

The hospital, one of 307 in the country to receive the award, was honored at a Jan. 20 ceremony hosted by the UW Organ Procurement Organization, the program that partners with OSF Saint Anthony Medical Center to serve organ donors and their families.

To receive the recognition, hospitals must achieve a 75 percent donation rate, meaning that at least three-fourths of the people who were eligible to be an organ donor became one. OSF Saint Anthony Medical Center served 10 donors which resulted in 32 organs for transplantation from Oct. 1, 2008, to March 31, 2010, the timeline reviewed for the 2010 honor.

“Our partners at St. Anthony’s are committed to the life-saving gift of organ donation,” said Jill Ellefson, executive director at the UW Health OPO. “These professionals recognize the important role they play in partnering with us to serve patients and their families to ensure the gift of life can be honored.”

In Illinois, more than 4,800 people are on the organ waiting list including almost 40 percent under the age of 50, and 85 children.
Friends join forces to increase organ donor awareness
By Deborah Gauthier/staff writer

Maria Flannery of Hopkinton and Lisa Buccella of Franklin became close friends when they were neighbors in 1991. They spent a great deal of time together, traveling, dinner parties and even sharing the train ride into Boston each workday. In 1994, that friendship developed even further when Flannery, who had been diagnosed with Juvenile Diabetes at the age of 10, was told that her kidneys were failing.
They think back to that year with gratitude for one other. As Flannery’s kidney function declined, Buccella provided a strong emotional support system and did all she could do to help. This included transportation to and from the train, running errands and even carrying her friend’s work bag each day. As they reflect on those days, they are able to laugh and even refer to them as the "Driving Miss Daisy" days.
"I was beyond tired," Flannery said. But on March 15, 1994, she said, "my father saved my life, literally." He was a match, and one of his kidneys has kept his daughter alive and healthy for 17 years. That kidney has now aged and Flannery is again in need of a transplant.
"Five people offered to be living donors, but none were a match," Flannery said. So now she is registered with the New England Organ Bank, one of more than 108,000 people waiting for the gift of life. This time, with improved medical procedures, she hopes for a pancreas as well, which would cure her diabetes.
Though they are no longer neighbors, Buccella remains by Flannery's side. And this time, the search for a transplant hits even closer to home. Buccella’s 45-year-old brother-in-law was diagnosed with leukemia in October and was told he needs a bone marrow transplant to survive.
He is fortunate. A perfect match was found through the National Marrow Donor Program, run by Be The Match registry. In February, he will receive a PBSC (peripheral blood stem cell) transplant given by an anonymous donor found in overseas. The majority of bone marrow transplants are now performed by this non-surgical procedure.
That doesn't negate the fact, however, that bone marrow donors, like organs and tissue donors, are in short supply, Buccella said. One of the reasons is that the opportunity doesn’t often present itself for discussion among family members. So she and Flannery pondered ways to raise awareness and the two joined forces.
On Saturday, Feb. 12 from 10 a.m. to noon, Buccella is holding a bone marrow drive, and Flannery will distribute information on how to become an organ and tissue donor. The event will be held at the Franklin YMCA, 45 Forge Hill Road in Franklin.
All that is required to become a potential registered bone marrow donor is a simple cheek swab that determines tissue type, Buccella said. This can be done at a local drive or online at .
Registering to become an organ donor is just as simple and can be done when renewing a driver's license, Flannery said, or registering at the New England Organ Bank website at
The two also plan to distribute literature at various Registry of Motor Vehicle locations in the coming months. They stress that the point isn’t to find donors for themselves and those they love - is to emphasize the need and ease. "So many people are waiting,'" Flannery said, and the wait is long - three to five years. The longer the wait, the less functional Flannery's kidneys will become and she, like so many others, will face dialysis if a donor is not found.
Not only do organ donations save lives, they bring comfort at a time of grief, Buccella said, a fact emphasized with the death of 9-year-old Christina-Taylor Green, killed Jan. 8 in the Tucson, Arizona shooting that seriously injured U.S. Congresswoman Gabrielle Giffords.
Unlike a high percentage of Americans, Christina was vocal about her support for organ donations. "It’s not a pleasant conversation to have around the dinner table" Flannery said, "but it’s important for family members to know your hope to be an organ donor in the event of your death".
The two friends are grateful to those who have already registered to be donors. They would like to see as many people as possible come to the event to learn about ways in which they can make a significant difference in other peoples' lives.
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Wrestlers, 'family' go to the mats for Nutley legend Stephen Searle

Stephen Searle sat on the edge of the bleachers Saturday at Nutley High School, watching wrestling. It’s a sport he never really enjoyed, but Nutley is his home and he loves the school where he was a star athlete with all his heart.
Still physically imposing at 45, Searle eagerly clapped and shouted encouragement across the mat. The big man was impossible to miss in his white and green T-shirt, which matched the green banners on the gymnasium walls and the green singlets on the Nutley wrestlers — all of it a jarring sight at a school where everyone and everything bleeds maroon and gray.
The color conversion was part of an effort to promote organ-donor awareness, which is a special cause for the Nutley wrestlers and a matter of life or death for Searle, who needs a kidney.
“It’s overwhelming because normally I’m a pretty private guy,” Searle said. “It’s amazing that they’re doing what they’re doing."
The efforts at Nutley are less about wrestling and more about family, a notion that is everywhere in this tight-knit Essex County community, especially on the musty mats inside the gym.
Nutley’s team has dedicated its season to organ-donor awareness for good reason. The father of coach Frank DiPiano and assistant Michael DiPiano Jr. was saved by a double transplant 12 years ago. Assistant Anthony Montes’ dad also received a life-saving transplant.
The ties continue: Athletic director Joe Piro, a former star heavyweight for Nutley, is Searle’s brother-in-law, and Searle’s 7-year-old son, Billy, is a de facto assistant on the team, sitting on the bench during matches.
“Organ donation hits right home on our bench,” Frank DiPiano said.
Nutley’s wrestlers have raised about $4,500 in donations so far. Last weekend, the team hosted a quad meet to get the word out about organ donation and how people can help. Between matches, Mike DiPiano Sr., a Nutley resident and Hall of Fame coach at St. Benedict’s Prep, gave a speech. He asked for help finding a kidney for Searle.
“There are 110,000 people today waiting for a transplant,” DiPiano Sr. told the crowd. “And these people are dying.”
At 6-foot-1-inch, 245 pounds, Searle loved it when the Nutley football team would call a quick pitch right and the big tackle would sprint to the outside, looking for the first opponent to mash into the ground. As a catcher on the baseball team, he played with the same aggression, hoping for a foolish opponent to try to run him over at the plate.
As a senior, Searle was all-state in football and baseball, and he went on to play catcher for two seasons at Fairleigh Dickinson University.
Wrest.JPGStephen Searle, a former Nutley High School athlete in need of a kidney transplant, attends an organ-donor awareness event hosted by the school's wrestling team.
“Everyone knew about Stephen Searle growing up Nutley,” Frank DiPiano said. “Just the name. Just the legend of Stephen Searle. It’s a small town.”
All the little boys in Nutley wanted to be just like Searle, including one in particular. Between innings at baseball games, there was always a thick kid squeezing in next to Searle in the dugout, and on the football field, the same kid would trail Searle like a shadow.
The kid was Joe Piro.
“He was my hero,” Piro said. “I idolized the guy.”
Years later, in 1999, Searle married Piro’s sister, Jackie.
Piro continued trailing Searle through the illnesses. Searle was diagnosed with Type 2 diabetes in 1995, but it didn’t present any serious problems until January 2010, when his kidneys started failing and were operating at about 85 percent. Even so, Searle’s doctor said he probably wouldn’t need a transplant for at least five to 10 years.
Then came the car crash.
Horrifying Scene
Searle remembers glass shards sprinkling around him like raindrops.
Searle and the family — Jackie, Billy, daughter Anna and their two dogs — were driving to Bradley Beach on July 16 when a woman in a Honda Passport ran a stop sign and drilled the side of Searle’s Chevy Trailblazer. The car flipped twice and came to a rest on its roof.
The kids and the dogs were unharmed and Jackie escaped with a deep cut on her leg. But Searle’s head had popped through the open sunroof and dragged against the pavement, ripping off part of his scalp and flecking his head with chunks of black pavement.
It took firefighters about an hour to cut Searle and Jackie from the vehicle. Once they got to Searle, the scene was horrific.
“They were holding my head together with gauze, thinking I was going to die at any second,” Searle said.
He lost four pints of blood and it took about 500 stitches and staples to patch up wounds to his face and head. Surgery lasted about four hours as a plastic surgeon sewed his eyelids back onto his face and fixed his broken nose.
Somehow, he survived, only to be confronted with the next challenge.
During a doctor’s visit in September, Searle was told the physical stress from the accident had caused his kidneys to deteriorate rapidly. They were operating at about 15 percent — a dangerously low level. He was told to prepare for dialysis.
Once word of Searle’s failing health reached Piro, it traveled throughout the Nutley athletic program. Piro requires each sports team to take on a community service project each season, and the wrestling team, naturally, made organ donation its cause.
In addition to the money raised and the support garnered for Searle, Nutley also had the perfect guy to step in and walk Searle through the process ahead.
Mike DiPiano Sr.
“Every day is a good day,” DiPiano Sr. often says.
His positive outlook comes from his unique vantage point. He is, after all, a man who was read his last rites.
A legendary figure at St. Benedict’s Prep in Newark just a few miles from Nutley, DiPiano’s wrestling teams were 274-89 and he remains a fixture in the township, where he lives and raised his family. His sons, Frank and Michael, grew up playing sports in Nutley rec leagues, where Mike also coached. His daughter, Michelle, played soccer and softball for Nutley High, graduating in 1999.
DiPiano Sr. battled diabetes and other health problems for most of his adult life, but in August 1996 he came down with pneumonia and slipped into a coma. Doctors at St. Michael’s Medical Center in Newark didn’t think he would make it through the night, so the Rev. Edwin Leahy, the headmaster at St. Benedict’s, rushed to his bedside and read him his last rites.
With the help of Leon Smith Sr., a renowned doctor, DiPiano Sr. made it through the night. But for the next 27 months he endured painful dialysis for four hours a day, three days a week.
About two years later, on Oct. 25, 1998, DiPiano Sr. received a pancreas and kidney transplant from a 21-year-old donor named Sean who was killed in a car accident. At last week’s quad-meet in Nutley, DiPiano Sr. wore a button with a picture of Sean.
When DiPiano Sr. heard about Searle’s condition, he drove to his house in Nutley and broke down the entire process. He explained what the different terms meant. He told him what to expect from the treatments. He hooked him up with the best doctors and got his name on the organ donation waiting list.
“He came right over just to make us realize it’s not life-ending,” Searle said. “It’s something that sucks, but we’ll all get through it. ‘We’ll get you on the list. You’ll be like me, and you’ll go on to live your normal life.’ ”
DiPiano Sr. accompanied Searle to Saint Barnabas Medical Center in Livingston for his first visit.
“He’s like the mayor up there,” Searle said. “Every room he walked in it’s like, ‘Hey, Big Mike! Big Mike!’ He’s joking around with the doctors, like, ‘Do you have a kidney in the backroom for my friend? Make sure you take care of my friend!’ ”
The Place To Be
The Sunday dinners at Piro’s house in Nutley have become so crowded it’s tough to fit all the people in one room.
The Searles come.
The DiPianos.
Other assorted friends and family members stop by for the spread of antipasto, macaroni, roast beef, chicken, stuffed bread and freshly baked cake.
Billy tramples through the house shooting guests with foam darts from his Nerf gun, and Piro and Searle argue about who makes better chili. Everyone squishes together on the couch to watch football until well after dark.
“Even though we’re not all related, we’re a big family,” Frank DiPiano said.
Wrest3.JPGNutley High School wrestling coach Frank DiPiano sits with Billy Searle, who helps out the team, Athletic Director Joe Piro during special wrestling match dedicated to organ donor awareness. Searle's father is in need of a transplant.
There’s nothing these people wouldn’t do for each other. For example: Billy told Santa Claus this year he wanted Frank DiPiano under his tree for Christmas. Told of Billy’s request, Frank DiPiano slept on the Searles’ couch Christmas Eve.
When Billy rolled out of bed, rushed downstairs and saw Frank DiPiano on the couch, he went nuts.
“He said, ‘Santa brought Frank DiPiano! He’s here on our couch!’ ” Searle said. “That’s the type of person Frankie is, and that’s the type of people they all are.”
It’s also at the Sunday dinners when the families pause and glance around the room for a reminder of how organ donation has affected the people they love. They look at Mike DiPiano Sr. and remember how the double transplant saved his life. They see Stephen Searle and they are reminded he’s the next one who needs help.
“Organ donation has become such a big part of what we’re about here,” Piro said. “It’s close to our hearts.”