Sunday, July 31, 2011

Life Stories: Breaking Ground in Minority Donation


Clive O. Callender, MD

Clive O. Callender, MD

Donation Professional: Washington, DC

Professor of Surgery, Howard University
Founder, National Minority Organ Tissue Transplant Education Program (MOTTEP)

National Minority Donor Awareness Day, Aug. 1

Throughout his career as a surgeon and professor, Dr. Callender has been a passionate donation advocate, encouraging and educating minority communities about the critical need for organ, eye, and tissue donation, and promoting better health among minorities to help reduce the need for transplantation.
His interest began when he received his transplant surgical training in 1969. Four years later, Dr. Callender founded the Howard University Hospital Transplant Centerm, the first minority-operated center in the United States.

In 1991, Dr. Callender helped to found National MOTTEP to increase the number of minority donors. Five years later, he created National Minority Donor Awareness Day, a yearly observance on August 1st, to raise awareness of the urgent need for organ, eye, and tissue donors from minority populations.
Over the last 15 years, the number of minority donors has doubled, which Dr. Callender finds gratifying.
Over the last 15 years, the number of minority donors has doubled, which Dr. Callender finds gratifying. "When we started this effort, we were told that minorities don't donate organs—we've proven that wrong," he notes. "Instead, we've learned that by overcoming common misconceptions and creating awareness about organ donation, communities come together and help take care of each other."

Today, as a leading African American transplant surgeon, Professor of Surgery at Howard University, and an expert in donation and transplantation among minorities, Dr. Callender has received many honors and awards. But it is his dream to be remembered as a God-fearing surgeon who reached the "unreachable stars."

Mark Your Calendar for National Minority Organ Donor Awareness Day

Source: Minority Nursing

TOMORROW, August 1 is National Minority Organ Donor Awareness Day, and the National Minority Organ and Tissue Transplant Education Program (National MOTTEP®) would love to see more nurses of color get involved in its mission of educating minority communities about organ/tissue transplantation issues and increasing the number of minority Americans who donate organs and tissue, such as kidneys and bone marrow.

Why is it so important to have more minority organ donors? Consider these statistics from the National MOTTEP and the Organ Procurement and Transplantation Network (OPTN):

• More than 83,000 persons are currently on the national transplant waiting list.

• 16 people die each day waiting for a life-saving organ transplant.

• A disproportionate number of these people who are on waiting lists and dying--approximately 50%--are racial/ethnic minorities, including 23,558 African Americans, 13,059 Hispanics/Latinos and 5,158 Asians/Pacific Islanders.

• Patients in need of a transplant are more likely to find a genetically compatible match within their own racial/ethnic group.

• Minority donors account for only about 25% of the available donor pool.

MOTTEP, the first program of its kind in the country, is an education and awareness campaign that delivers a culturally sensitive message through ethnically similar messengers who are known within their communities. In addition to implementing strategies to increase the participation of minorities in organ/tissue donation, including signing organ donor cards, the program also includes a preventive focus that addresses the diseases and behaviors that lead to the need for organ transplants, such as diabetes, hypertension, alcohol/substance abuse and poor nutrition.

MOTTEP, which originated the idea for National Minority Donor Awareness Day in 1996, suggests a number of ways that minority nurses can get involved in this life-saving campaign. For example:

• Organize a health fair that includes prevention and organ donation information.

• Distribute brochures and other information about organ/tissue donation (available from MOTTEP) to local churches, businesses and community organizations.

• Invite a speaker to give a presentation at your church, school, workplace or community group meeting.

• Hold a family forum where relatives and friends can discuss their questions and concerns about living healthier lifestyles and organ/tissue donation.

• Encourage transplant recipients or donor families that you know to tell their stories.

For more information about how you can participate in National Minority Organ Donor Awareness Day activities in your community, contact the National MOTTEP in Washington, D.C. at (800) 393-2839 or visit MOTTEP also has several local branches in various parts of the country, including Chicago, Detroit, Miami, New York, Honolulu and elsewhere.

For volunteer, spreading word on organ donation is personal

Written by | WADE MALCOLM  | The News Journal

On Easter Sunday in 1991, a young family in Texas drove home from dinner.

They crossed a bridge with a truck coming toward them from the other direction. The head-on collision moments later snapped the husband's neck. The mother, a nurse, struggled to give first aid to her 2-year-old son, who later died from brain swelling.

Although the accident took two people, it also saved at least one when the mother donated her son's organs.

Less than a week later -- and after a six-and-a-half- hour surgery -- the little boy's liver began a new life in the body of a little girl from Delaware, who had spent four of her first 13 months of life eatingthrough a tube.

That was the first time in Gabe Archangelo's life an organ transplant saved the life of a loved one. It would not be the last.

At the time Archangelo's daughter, Gabrielle, received the liver, organ transplants were still rare, and the idea of listing "organ donor" on a driver's license was relatively new.

Archangelo and his family have spent much of their lives since then promoting policies and raising awareness to increase the rate of organ donation in Delaware -- a dedication that has earned him a place on The News Journal's list of 50 Who Matter, which shines a light on Delawareans who work out of the spotlight to improve the lives of others.

The Archangelos eventually learned the identity of the donor mother -- Tamara Mitchell, of San Angelo, Texas. They also found out her motivation for offering the organs of her son, Aaron.

"She didn't want another mother to feel the pain she did," Archangelo said. "You hear a thing like that, and you want to give back."
Giving back

Feeling indebted to the donor who saved Gabrielle's life, Archangelo and his wife, Eve, started volunteering with the Gift of Life, a Philadelphia-based nonprofit that connects donors with recipients and helps cover the cost of procuring organs offered for donation.

"In the beginning, it was just attending meetings and then Gift of Life said, 'Well, how about starting a Delaware group?' " Archangelo said.

He started leading the Delaware group around 2005. By then, Archangelo felt even more committed to the cause of organ donation. Eve, who had diabetes since childhood, received a kidney from a cousin in 1997 and then a pancreas from an anonymous donor.

In 1998, the Archangelos were guests when Gov. Tom Carper signed a bill requiring the state Department of Motor Vehicles to ask drivers if they want to be identified as organ donors on their licenses. And Gabrielle, a healthy young girl thanks to someone else's liver living inside of her, appeared on fliers and posters promoting organ donation.

The Archangelos embraced their roles as messengers for the cause, said John Green, director of community relations for Gift of Life.

"I can go out and speak to a group, and I could probably be pretty effective. It's my job," he said. "But when you have someone like Gabe whose family has been touched by organ donation not just once but three times, it really inspires and motivates people."

The northern Delaware Gift of Life group has about 15 active members, and the more recently formed southern Delaware group has about 10 active members.

"Gabe is one of our greatest volunteers. He's tremendously active. He's always thinking of ways to get our message out to the public," said Todd Franzen, community education coordinator for Gift of Life. "I don't know how many weekends he's given up to help us. I always question where he gets his energy."

Archangelo and his fellow volunteers can be seen at community events, festivals and schools throughout the state handing out information explaining the need for more organ donors and encouraging people to register.

Their efforts appear to have paid off already, according to state statistics compiled by Gift of Life. Among Delawareans holding driver's licenses or state IDs, the percentage of people listed as organ donors has increased every year since 2006 -- from 38.86 percent to 43.57 percent at the beginning of this year.
Squashing myths

The group works to dispel surprisingly common myths about organ donation. Some believe that being an organ donor will result in them getting substandard medical care in an emergency or that taking the organs will noticeably disfigure the body of the donor. Neither of those is true, Franzen said, and those rumors are starting to subside because of people like Archangelo.

"We're seeing a definite positive trend upwards in the number of people registering to be organ donors," he said.

Mostly, Archangelo gives living proof that organ donation saves lives by pointing to his daughter and wife. Gabrielle, now 21, will be a senior nursing major at Duquesne University in Pittsburgh this fall.

And it all traces back to a decision a mother made in the last moments of her son's life.

The two families still correspond, and the Archangelos even attended the wedding of Mitchell's daughter, who survived the accident.

"I felt compelled to write you, to thank you," Mitchell wrote in a letter nearly 20 years ago. "It was you who gave me a great gift. At a time when I felt my world collapsing, you allowed me to see a glimpse of silver-lining."

Radiothon marks donor day

The Daily Reflector

Carolina Donor Services is hosting a three-hour live radiothon on Monday to mark National Minority Donor Awareness Day and promote organ donation.

The event is being held from 4-7 p.m. at WOOW radio station, 405 Evans St.

The Rev. Sidney Locks with Cornerstone Missionary Baptist Church and Ralph Love, a Pitt County Board of Education member, will discuss their organ transplants.

Arlette Whitaker will talk about working as a dialysis nurse while waiting for a kidney transplant and Bettie and James Whitfield will share how she gave her husband one of her kidneys.

Carolina Donor Services staff and representatives from Pitt County Memorial Hospital's Transplant Services will answer questions about the donation process.

Carolina Donor Services is the federally designated not-for-profit organ procurement organization for 78 counties of North Carolina and Danville, Va.

More than 1,800 black North Carolinians are waiting for transplants.

Nearly half of the people on national waiting lists for transplants are minorities, yet only 25 percent of the donors are minorities.

Organizers say the radiothon is an opportunity for people to learn why it is important for minorities to donate

For more information, visit; call 1-800-200-2672 or write 3621 Lyckan Parkway, Durham, NC 27707.

Kidney donation keeps reservist in the fight

By Jill Laster - Staff writer | Navy Times

Add caption

Timothy Sullivan thought his two-decade career in the Navy was over when his doctor called in late September to say his kidneys were failing.

But one of Sullivan’s neighbors, Barry McCarthy, heard the chief’s story and wanted to help. He went through testing to be a donor and — when he turned out to be a match — volunteered to donate his kidney.

The late May transplant let Sullivan skip the years-long waiting list and save his career. Now, Sullivan and his fellow sailors are giving back.

In the weeks since the transplant, McCarthy has been getting letters from sailors across the U.S. who heard the story. He’ll also become an honorary chief petty officer during an Aug. 5 ceremony at the Naval War College in Newport, R.I.

“There were a couple of times at home I cried — people calling me a hero and calling it a selfless act,” said McCarthy, 48, of Lowell, Mass. “It hit home in so many ways.”

Sullivan, a chief information systems technician and senior enlisted leader of Navy Intelligence Reserve Unit 0397 in Newport, first went to see his doctor in late September after experiencing some unusual symptoms. He had been sleeping a lot, felt pain in his legs and had lost about 25 pounds in the course of a few months.

When the doctor called five days later with the results of Sullivan’s blood work, the chief was stunned. Tests showed less than 10 percent function in Sullivan’s kidneys, putting him at risk for an aneurysm — or worse — any day. Sullivan immediately left for the hospital and begin treatment for polycystic kidney disease.

Sullivan would need to undergo dialysis three times a week and put his name on the waiting list for a kidney, which could run five years. It seemed like the end of his Navy career.

“That hurt me the hardest,” Sullivan said. “If I’m going to end the Navy, I’m going to end on my own terms.”

When Sullivan returned home from his initial hospital stay, McCarthy — a friend since Sullivan moved across the street six years earlier — walked over with his wife to see what was wrong.

“I said, ‘I need a new kidney to go on,’ ” Sullivan said. “He said, ‘What blood type are you?’ I said, ‘O-positive.’ He said, ‘You can have mine.’ ”

After months of testing, McCarthy turned out to be a perfect match for Sullivan. They completed the transplant in late May and began recovering.

McCarthy returned to work again about a month after the surgery. Sullivan hopes to return to his civilian jobs as lead quality engineer for Raytheon and part-time Apple specialist in August, and plans to return to drilling in September. Sullivan spent 10 years on active duty and is on track to be deployable as early as January.

“My whole life has really changed,” Sullivan said. “I’m able to sit back and go, ‘You know, I’m going to be around for my son to graduate, and I’m going to be around to grow old with my wife.’ ”

Sullivan wanted to honor his friend for the donation, so he asked his chief’s mess in Newport to spread the word about the donation and ask sailors to send McCarthy a letter. The chief’s mess also voted unanimously to make McCarthy an honorary chief.

McCarthy, who has also received about 50 thank-you cards from sailors, said he is thrilled with the honorary title and that he could make the donation.

“To know that my organ is now in somebody, I know it’s doing the work it did for me in somebody else,” McCarthy said. “It feels good.”

50 miles, 50 states, 50 days

Kidney recipient rides bike to raise awareness about need for organ donors

Eighteen people die each day in the United States waiting for an organ transplant.

So this summer, David Landsberg rides. And rides. And rides.

On Wednesday, Landsberg, a kidney transplant recipient in 1999, rode his bike in Livonia and on Hines Drive on day No. 24 of his “Donors Rock Ride,” his quest to ride his bike 50 miles in 50 states in 50 days.

Landsberg was joined at the Cycle to Fitness bike shop on Farmington Road in Livonia by six members of the Racing Greyhounds riding club and Jennifer Tislerics, special events and partnerships coordinator of the Gift of Life Michigan. Tislerics said the ride was a “great opportunity to spread his message.”

Landsberg is riding his bike to educate the public and promote the need for registered organ, eye and tissue donors. More than 110,000 Americans are waiting for life-saving transplants.

Landsberg, who is partnering with Donate Life America on his Donors Rock Ride, began the ride July 4, the anniversary date Landsberg received his life-saving kidney from a 6-year-old boy.

“If there are no donors, there are no recipients,” Landsberg said.

Landsberg of Dallas, Texas, was born with polycystic kidney disease, a progressive degenerative disease that leads to renal failure, he said.

Both kidneys and his spleen were removed in 1998. He was on dialysis three days a week, four hours a day and, he said, he “watched a lot of people die.”

“When you're sick, you start defining yourself by what's happening in your life,” Landsberg said. “I would say I was a dialysis patient. Then one day I saw Kirk Douglas interviewed by Barbara Walters after he had suffered a stroke. She asked him why he was so happy, and he replied, ‘I'm thankful it's not worse.'”

At that point Landsberg thought about Christopher Reeves, who was paralyzed from his horse-riding accident, yet Reeves never gave up in his efforts to regain mobility. “I thought, ‘I've got it easy,'” Landsberg said. “I was more grateful for what I had vs. what I didn't have.”

Landsberg, founder of the Society for Organ Donor Awareness, calls July 4 his “Independence from Dialysis Day.” He kicked off the ride in Austin, Texas, that day and will conclude it Aug. 23 inOklahoma City.

His mission is also to register new donors in every state.

Landsberg said he feels “fantastic” and is thankful and grateful for the family who gave him his opportunity to live with the donated kidney.

Bike riding is “pretty grueling,” doing the 50 miles day after day, he said.

“I want to get people's attention to what I'm doing and open up dialogue to the whole donor process,” Landsberg said.

Landsberg has ridden his Specialized Roubaix bike 1,200 miles as of Wednesday. When he finishes in August, Landsberg will have ridden 2,600 miles. He added two more cities to bring the total number to 52 on the ride.

Six members of the Livonia-based Racing Greyhounds joined him Wednesday morning at the Cycle to Fitness bike shop on Farmington Road before heading out south on to Farmington Road to Hines Drive.

“We liked his story, and we like riding,” said Daniel Sterling, a Livonia resident who leads the riding club.

M.V. Carroll of Farmington Hills, also a member of the Racing Greyhounds, said the group enjoys taking in Hines Drive. “It's the freedom of being on a bicycle with nature and out with friends,” Carroll said.

“We're going to get a few miles in. It helps relieve stress,” Sterling said.

Landsberg hopes more Michigan residents step forward and register to donate organs. “It doesn't cost any money,” he said. “If you leave this Earth, you'll be a hero.

“We always look at people in the military, police officers and firefighters as our heroes. This is a way for the common person to be a hero and to make the world a better place.”

Anyone who wishes to join the Donor Registry can do so, by calling (800) 482-4881 or by visiting any Secretary of State branch office. Michigan residents who join the Donor Registry receive a red heart donor emblem for the front of their license or state ID card so they know they are fully registered.

Local teen, other organ donors give critical gift

Nearly half of state's population registered

Though the choice is different for each person, the decision to become an organ donor has the potential to turn a tragic situation into hope for others.

Recently, two Anne Arundel County residents provided that hope.

Terry Elvin Potts of Glen Burnie had his organs removed for donation after he was fatally injured when his car hit a utility pole in Shady Side last week.

And Kara Micciche, a 17-year-old Broadneck High School student who was fatally injured July 12 while crossing Ritchie Highway, played a part in helping seven people when her organs were donated.

Micciche and Potts are two of about 40 deceased donors in the state so far this year, according to the Organ Procurement and Transplantation Network website.

They were also two of nearly 2.2 million people in the state - about 48 percent of Maryland's population - registered to be organ donors, said Natalie Benavides, executive director of Donate Life Maryland, which runs the Maryland donor registry.

While a change in the Maryland donor registry system in 2009 makes it difficult to determine trends in the number of organ donors over the years, there were 150,000 new registrations in 2010, Benavides said.

Still, "there are a lot more people who would be willing to donate if we were able to inform them," she said.

Benavides said Donate Life Maryland's work includes outreach to state residents to raise awareness and help people overcome their concerns about organ donation.

For some Anne Arundel County residents, the decision to become an organ donor was relatively easy, inspired by the idea that, as Kerri Nusbaum of Severn put it, "You just can't take them with you."

Said Emilie Waymire of Annapolis: "If I'm dying or dead, I'm not using it. I might as well pass it on to do someone good."

But others echoed common concerns that led them to decide against registering as a donor.

Kirsten Vella-Pratt of Harwood said she worried that hospital staff might not work as hard to save her life if they saw the red heart on her driver's license that indicated she was a donor.

Instead, she said she has arranged with her husband that if she is ever beyond saving, he will give permission for her organs to be donated.

"I definitely want the best chance for my organs to be mine," Vella-Pratt said.

Jennifer Gelman, director of professional education at The Living Legacy Foundation of Maryland, which also conducts outreach throughout the state, said the organization has encountered others who share this concern. But a hospital's staff is not aware of patients' donor status while treating them, Gelman said.

She said organ procurement organizations, or OPOs, such as The Living Legacy Foundation of Maryland, are responsible for determining a person's donor status.

Michelle Donovan, head of the organ donation program at the Anne Arundel Medical Center, also stressed that the hospitals and OPOs are separate entities.

"The hospital and nursing staff really don't know" the patient's donor status, Donovan said.

Some also hesitate to register because they think they aren't eligible to become a donor because of their age or a medical condition, such as cancer. But the need for organs often means that a wide variety of donors are accepted, Benavides said.

She added that a potential donor's organs are thoroughly tested before they are transplanted, so it's OK to sign up even if your organs are later deemed unsuitable.

"Anyone who wants to put a heart on their driver's license should," Benavides said.
Donation process

Of those who register to be organ donors, only a few will die in circumstances that allow donation.

In most cases, a person becomes a donor if he or she has suffered trauma to the brain and has been declared brain dead - meaning the brain or brain stem no longer functions - but remains on a ventilator with hospital staff maintaining the body, using procedures such as blood transfusions. That was the case with Micciche.

It is possible to use the lungs, kidneys, heart, liver, pancreas and intestines of these patients.

The other organ-donation scenario involves cardiac death, in which the family of a patient decides to end life-sustaining treatment and remove the patient from a ventilator, allowing the heart to stop. In these cases, only the liver and kidneys can be transplanted.

Organ donation involves the coordinated efforts of the hospital caring for the donor, the transplant center caring for the recipient, and an OPO making arrangements for the transplant.

The Living Legacy Foundation of Maryland serves as the OPO for most of the state, while the Washington Regional Transplant Consortium covers Charles, Montgomery and Prince George's counties.

Other organizations are responsible for coordinating transplants of tissue and eyes, which go through a quarantine process and can be preserved much longer outside the body.

According to Gelman, most of the state hospitals notify the Living Legacy Foundation of the death of someone who could serve as a donor. The organization checks the Maryland donor registry to see if the person is listed, and sends representatives to speak with the family, either to inform them that the person was registered or to discuss the possibility of organ donation.

Before organs can be transplanted, the donor's social and medical history must be researched to determine which organs are suitable for transplant.

After searching the United Network for Organ Sharing database for potential recipients, the Living Legacy Foundation contacts the appropriate transplant center. If the donation is accepted, the foundation arranges to transport the organ.

Organs can go to one of the two transplant centers in Maryland or to another on the East Coast, depending on how long the organ can be preserved outside the body.
Saving lives

Last year, the 120 people who became donors in Maryland after they died provided 476 transplanted organs, according to the Organ Procurement and Transplantation Network's website. But as of July 8, there were 2,212 Maryland residents waiting for organ transplants.

Donors such as Micciche and Potts make a real difference.

"(Micciche) saved seven lives," said Donovan of Anne Arundel Medical Center.

Donovan said the hospital has retrieved organs from three donors so far this year and from five last year. In the past few years, she said, the hospital has seen more patients who at the time of their deaths are found to have registered as donors. She attributes this in part to increased public awareness.

Even if a person has not been registered as an organ donor but is eligible to be one, "it's seldom we have a family turn down organ donation," Donovan said.

To register to be an organ donor, visit

Support For Organ Donation High: Canadian Survey

by: News Canada

Family consent key

(NC)-Canadians overwhelmingly support the idea of organ donation. A 2001 survey by the Environics Research Group of more than 1,516 Canadians revealed that 96% of Canadians support the idea of organ and tissue donation. They also have a fairly good knowledge of the official way to express their intention to donate with their provinces and territories.

A total of 46% of Canadians have signed their cards or registered their intentions to be a donor with their province or territory. However, 45% remain uncommitted. Only 9% say they have decided not to donate.

89% of those who have signed up (46%) have also discussed their wishes with their families. The challenge facing Canada is to get the 45% who remain uncommitted to take the decision, sign up and then tell their families. It is a life-saving, life-improving decision and it could be your last.

For more information on organ and tissue donation and how you can donate,
visit on the Internet.

Drivers asked organ donor question, UK

Anyone applying online for a driving licence from Monday will be required to answer a question regarding organ donation.

The prompted choice system will make would-be drivers state if they want to sign up to the NHS Organ Donor Register or defer a decision until a later date.

It is hoped the DVLA scheme will boost the numbers of those willing to give vital body parts to help others live in the case of their own death.

Under the current system, applicants can skip over a question on donation when applying for a driving licence.

But the new regime will require that they opt to either register for donation, state that they have already signed up or state: “I do not wish to answer this question now.”

At present, only 29% of people in the UK are registered donors. But studies have shown that a far larger proportion are in favour of donating body parts.

Getting more people to sign-up could save the lives of some of the 8,000 people in the UK currently waiting for a transplant.

Public health minister Anne Milton said: “Being an organ donor is a truly selfless act and a life saving gift to someone in need.

“Only 29% of people in the UK have registered to donate organs, when we know 90% of people in the UK have expressed interest in donating.

“We want to make it easier for people to sign up to the Organ Donor Register when they apply for their driving licence and encourage everyone to discuss their organ donation wishes with their loved ones.”

Saturday, July 30, 2011

Long Island’s Michael Mazzei Talks About Successful Kidney Transplant Made Possible By Son Jamie

NEW YORK (CBSNewYork) — It was an emotional homecoming for 71-year-old Michael Mazzei at his Manhasset hair salon on Friday.

For more than 20 years, Mazzei has worked side by side with his son, Jamie. Now they share more than just a profession after Jamie donated a kidney to his father earlier this month.

Mona Rivera of 1010 WINS was the first to report on the story before the transplant. On Friday, customers and staff were overjoyed to see and hear that the Mazzei’s were on the mend.

“I am like happy, you know, that my son gave his kidney and it was such a perfect match was incredible and we’re so grateful,” Michael Mazzei said.

Both Michael and Jamie were reunited with their medical team at North Shore University Hospital on Friday.

Ten days after the surgery, Dr. Ernesto Molmenti, who performed the transplant, said he believes it was a match made in heaven.

“The transplant was incredibly successful,” Molmenti said. “I can’t recall any…never so good.”

“Michael is very lucky to have had such a great match with Jamie. Usually, there are six markers and to have five out of six, it’s a very, very good match,” Molmenti said.

It’s been life changing for both men.

Michael Mazzei has acute diabetes and found out he needed a kidney transplant three months ago. His son immediately got tested to see if he was a match.

“It was made very clear to me that I could live a completely normal life with one kidney. So with that being said, the choice was just obvious,” Jamie Mazzei said.

“Jamie is a giver. I think with everything and everybody,” said Jamie’swife, Violet.

“It’s just a miracle and there’s no one that deserves miracles more than Michael,” client Denise Silverberg said.

“You know, I’m just so happy I was able to do it and I’m so happy with the outcome. I mean, he looks great, you know, and I feel good today so what more can you ask for?” said Jamie.

Employees at the salon have raised money and plan to make a donation to a kidney foundation, hoping to raise awareness about organ donation.

Both Michael and Jamie expect to be back to work at their salon by the end of the summer.

Gift of Life: Three stories of how donated organs can save, and change, someone’s life

By JEREMY H. DICKMAN  | Sun News Editor
A hero is defined as a person of distinguished courage or ability, admired for his brave deeds and noble qualities. That definition fits perfectly with organ donors.

Had it not been for organ donors, Kasey Ehlert, like thousand of people in the United Sates, would not be alive today.

Ehlert, 36, of Crystal, received a heart transplant in November 2000. Born with no left ventricle, Ehlert had three open heart surgeries, one heart operation and 60-plus procedures before receiving the heart transplant.

“I was on my deathbed,” Ehlert said. “The doctors had prepared me to go home and say my goodbyes to my family and friends.”

Nearing 11 years since his transplant, Ehlert said he is doing great and has showed no signs of rejection.

“I’m followed by University of Michigan doctors yearly to test for rejections and continue to take medications daily,” Ehlert said. “Doctors have said I am the poster child for organ donation.”

With his transplant completed and since he is doing so well, Ehlert said he has been able to work many more hours at International Automotive Components in Alma.

“Last year I worked over 1,000 overtime hours,” he said. “I live a normal life now.”

In a twist of fate, Ehlert was able to discover the name of the person who donated the heart to him. That turned out to be 18-year-old Amber Williams who died in an automobile accident.

“In the summer of 2008 I met the parents (Kathy and Larry Williams) of Amber. It’s an overwhelming experience to sit and talk to the family who saved your life.”

Currently 110,000 people, including 1,785 children, in the United States who are waiting for an organ donation, said Joanne Dupuis, registered nurse and cardiac transplant coordinator for Children’s Hospital of Michigan.

Dupuis said 25 percent of those waiting for a donation will die before finding a match.

“Part of that reason is people may have decided in their own mind they want to be a donor, but don’t communicate that wish to their family members,” she said.

Waiting for a transplant

For another mid-Michigan resident, the wait is continuing.

Ithaca resident Johnny Boyer, 47, is in renal failure and undergoes dialysis three times a week at Great Lakes Renal Network in Alma, his wife Beverly Boyer said. Boyer will have been on the St. Mary’s Transplant Center list for three years in October waiting for a kidney transplant.

“He’s in Stage 1 Renal Failure, which means his kidneys no longer function on their own,” Beverly Boyer said of her husband’s condition, which was caused from diabetes.

The father of four children, including two younger kids, ages 12 and 7, Boyer has been on dialysis for two years.

“It’s like clockwork, he doesn’t miss it for anything,” Beverly Boyer said of the dialysis.

Without a kidney transplant, Johnny Boyer is likely facing a life expectancy of two to seven more years, his wife said. A transplant could give him a range of 25 to 30 more years and also reduce his fatigue and high blood pressure.

“I would love to have my husband another 30 years versus five years,” Beverly Boyer said breaking into tears.

Becoming an organ donor, which is a quick and easy process, is all about saving lives.

“To give somebody an opportunity to live who may not have that chance without a donor,” Beverly Boyer said.

Anyone who wants to see if they are a match for Boyer can call 616-685-6222, choose option 3 and answer a few questions, such as name and blood type.

A family’s story

Mt. Pleasant resident Sherrie Anderson had two tragic meetings with organ donations – only 16 months apart.

Anderson’s brother died July 15, 2004, at 29 years old, while her mother died at age 69 from a heart attack in March 2003. Both were seemingly in good health.

Anderson’s brother had just worked on his van in preparation for a trip when he went inside complaining of a bad headache. The next thing they knew he was being helicoptered to two different hospitals. He died twice en route to the hospitals, but was brought back to life each time. The brother would later die at a Kalamazoo hospital.

“On my way to the hospital I was in the mindset that when I got there he would be OK,” Anderson said of her brother. “When I got to the hospital, the doctors said they were waiting for test results to see if there was any brain activity.”

Her brother had suffered a brain aneurysm.

“The medical team asked right away about organ donation,” Anderson said.

The family made the decision to donate her brother’s organs. Anderson said her brother’s organs went to five different people.

“That right there is five people who had their lives either saved or extended because of donations,” she said.

One of the most interesting stories Anderson told is that her brother’s intestines went to a young girl who had spent her entire life eating through a feeding tube.

“She received his intestines and recovered beautifully,” Anderson said. “She went on to get married and became the first woman in Michigan, if not in the country, to survive an intestine transplant and deliver a full-term baby.”

A father of six received Anderson’s brother’s heart.

“That man was at his death’s door and now he is doing great and can play with his kids,” she said.

Becoming an organ donor

By becoming an organ donor, Anderson said “you can turn your sorrow into somebody else’s happiness.”

Although numbers of organ donor registrations have increased 25 percent from June 2010 to the same month this year, Michigan still ranks 45th across the nation in terms of people registered, Dupuis said.

A total of 36,265 people joined the Registry last month, Secretary of State Ruth Johnson said in a press release. This number was up from the 28,104 signed up in June 2010.

The rise in registration comes on the heels of Johnson’s implementation of a new policy in April requiring employees at branch offices, time permitting, to ask customers if they want to sign up to become an organ donor.

“For years, Michigan has ranked nearly last among states in organ donor registration,” Johnson said. “In cooperation with Gift of Life Michigan, the Michigan Eye-Bank and our other partners, we are doing everything we can to turn the numbers around. The more people who are registered as willing to donate, the more lives will be ultimately saved.”

The Michigan Organ Donor Registry has about 2.2 million residents enrolled, less than one-third of the state’s adult population. Each organ donor has the potential to save eight lives and enhance the lives of as many as 50 patients.

Organs are also not the only thing that can be donated.

“You can also donate tissues like your corneas and help a blind person see or your skin for someone severely burned,” Dupuis said. “It doesn’t make a person look any different for the funeral or delay the funeral process. It’s amazing. It’s limitless the things they can use.”

To become an organ donor go to or

Thousand Oaks woman gained miracle kidney, funding restrictions helped take it away

By Tom Kisken | Ventura County Star

An hour before sunrise, Jeannette Castaneda unfurled a bed sheet over a reclining chair to keep pale green vinyl from clinging to her arms. She huddled under a blanket as a technician jabbed her with a needle, leashing her to the machine that does what her kidneys cannot.
Because she needs a miracle. Again.
Ten years ago, when Castaneda was a junior at Thousand Oaks High School, a kidney given by the family of an unknown donor transplanted her life from fatigue and illness to energy and hope.
"I felt brand new," she said of what seems a distant memory.
That feeling ended when Medicare stopped paying for anti-rejection medicine because of controversial restrictions that too often push people at least three years removed from transplants into a free fall. When the flow of medicine stopped, Castaneda's new kidney shut down like a broken clock.
Castaneda knows nothing about Medicare's regulations or the reasons for them. When her kidney failed in 2006 because she couldn't afford $1,500 a month for immunosuppressives, she was a community college student who worked part-time as a tutor at the Boys & Girls Club of Moorpark.
"It's basically saying they don't care if we have a way to pay for stuff or not," she said. "It meant find your way to pay for your medicine or you're screwed."
Now, and for the past five years, the 26-year-old Thousand Oaks woman rises at 4:15 a.m. three days a week, pulls on a hooded sweatshirt and drives the half mile to her dialysis center. She watches "The Fresh Prince of Bel-Air" reruns as plastic tubes feed her blood into a mechanical filter. After four hours in the chair, she feels lucky to have the energy to climb the stairs at home to the bedroom decorated with an Al Pacino poster.
Her cellphone rests on a chair-side table during dialysis. When she receives calls from area code 310, she wonders if the wait for a second transplant is about to end, though the limbo could stretch five more years. Or longer.
"I could be 31 probably when I get my transplant. 31," she said, mulling over a life placed on hold. "What I think about is what I've done in my life. It's not much."
Medicare covers dialysis for as long as people need it, also paying nearly all of the costs for a kidney transplant. In Southern California, that means nearly $200,000, twice the national average. But the federal government ends its $17,000 a year payments for anti-rejection medicine and other care 36 months after the operation. Defenders of the limits say transplants free people from renal disease, allowing them to provide for themselves and find jobs that offer insurance, which would pay for the anti-rejection medicine.
"We help you and now you need to help yourself," said Ilana Berg, an outpatient kidney transplant coordinator at Ronald Reagan UCLA Medical Center. "This is the reason you were given a second chance."
'Everything was perfect'
She smiles nonstop, even when crying as she talks of her mother who died of ovarian cancer. Her eyes are tired. Her wit is sharp. She teases everyone from the technician who checks her blood pressure to the photographer squeamish about blood.
"You want me to let it go?" she said of tape and gauze that keep her arm from gushing after dialysis.
Castaneda lives in a Thousand Oaks town house with her father who works in construction, her sister and a 9-year-old niece. Still a student at Moorpark College, she's working to become a registered nurse in a career choice sparked by the caregivers who didn't understand what it's like to be 12 and diagnosed with kidney failure.
"They'd be like 'Hurry up and take your pills'" she said. "Those nurses are the ones who inspired me. ... I want to do better."
Her problems started because a condition called vasculitis inflamed blood vessels and killed cell tissue in her kidneys, causing both organs to fail. She slept attached to a home dialysis machine. She pingponged in and out of the hospital, missing most of junior high.
After four years of waiting, she received the call from UCLA Medical Center at 5 a.m. on March 17, 2001. An organ donor with O positive blood had just died. Her transplant was set for that night. She remembers little of what happened, memories blurred by the fear and excitement.
Nothing is fuzzy about the changes the transplant brought.
Instead of relying on a machine to rid her body of waste fluid, she went to the bathroom like anyone else. She could eat bananas, oranges and other foods high in potassium, regulated by the kidneys. She graduated from high school and started working at Orange Julius, then adding a second job at Papyrus.
Castaneda took about 20 pills a day, most designed to relax her body's immunities and keep a cavalry of white blood cells from mistakenly attacking the kidney. Medicare paid for 80 percent and the rest was picked up by the state and federally funded insurance program for poor and disabled families, Medi-Cal.
"Everything was perfect," she said. " ... I had so much energy. I could see everything differently. I felt born again."
Scrambling for purchase
Social workers and financial counselors start explaining Medicare's 36-month rule as soon as people are considered for transplants, said Berg of UCLA.
"We tell everyone, 'You will lose your Medicare,'" she said. "It is nothing that is hidden."
But advance warning has limited value, said Dr. Anthony Capparelli, Castaneda's kidney specialist. Fatigue, anemia and other illnesses keep most people from working full-time during dialysis. The transplant helps but employers aren't leaping to hire people with histories of disabilities who have been out of work for several years.
"I think it's fairly wishful thinking," he said of the premise that people can find private insurance three years after a transplant. According to a 2009 survey by the American Society of Transplantation, a research and advocacy group, only three in 10 kidney transplant recipients are covered by private insurance.
If advance warnings were delivered to Castaneda, she never heard them. Shortly before the coverage was dropped, she received a letter from Medicare telling her she was no longer disabled. Correspondence from Medi-Cal said state benefits were disappearing because she turned 21 and was no longer a child.
She scrambled for footholds. Transplant nurses at UCLA gave her a temporary supply of anti-rejection meds and referred her to pharmaceutical companies that did the same. Together, the supply gave her a few months. She went to private insurance companies but was told it would be hard, maybe impossible, for her to get coverage because of her kidney problems.
A drug called Prograf ran out first. Then another immunosuppressive, CellCept, went dry.
Castaneda tried to convince herself she might be OK even without the drugs.
"I was hoping there would be a miracle, that I wouldn't need the medication," she said.
Losing the fight
Dolores Castaneda was the woman who cleaned compulsively, never told her age and always found a way to get her daughter the health care she needed.
She died on March 16, 2005, of cancer that spread to her liver. A year later, when there was no more money for immunosuppressives, Jeannette Castaneda was on her own.
"This probably wouldn't have happened if she was here," said Castaneda as she cried. "Maybe I didn't try hard enough to find help."
The pain started on her right side, over the transplanted kidney, and radiated toward her back. Castaneda was tired all the time. She felt nauseous. She ended up at UCLA Medical Center. Doctors told her it was over.
"They told me my kidney was absolutely gone," she said.
Not many choices
She returned to the transplant waiting list in 2006, shortly after surgeons removed the first kidney. She worries about it happening again — getting another miracle and losing it when Medicare pulls funding for medicine.
"I think about it a lot," she said. "Maybe I'll be a nurse by then and be able to get insurance."
The jeopardy doesn't change the dream. The reward is too powerful. The alternative is grim. At the dialysis center, Castaneda sat with fingers pressed over bandages to keep her arm from bleeding. A technician named Noe told her she was good to go.
"See you on Wednesday," he said.
"Unfortunately," she answered quietly