Merv Sheppard's Transplant Network

Organ recipient to throw first pitch at Toronto Blue Jays Game

2008-07-25T09:04:00.003-04:00

If you are going to be in the Toronto area this coming Sunday, July 27th, why not take in the Blue Jays game with the Seattle Mariners at 1pm and help support Cystic Fibrosis and organ donation awareness? Sarah Gordon sent me the following note which is another fine example of organ recipients wasting no time in "giving back" by raising awareness for organ donation and the condition that caused their transplant.

"Hi Merv,
HI, my name is Sarah Gordon and I have cystic fibrosis, and 22 years old and had a double lung transplant on Jan. 10th 2008. I just wanted to let you know that I am throwing out the first pitch at the Blue Jays game on Sunday July 27th. I am doing this in hopes to raise awareness of cystic fibrosis and organ transplantation. I was told by Dr. Chaparro that you were really active with organ donation awareness and activities involving transplant recipents so I wanted to let you know about this great opportunity I have. Hopefully some people can come to the game! Sarah."

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network
For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

Your generosity can save up to eight lives through organ donation and enhance another 50 through cornea and tissue donation

Organ donation a true gift of life

2008-07-24T06:00:00.000-04:00

From The Leaf Chronical, Clarksville, Tennessee:

By STACY SMITH SEGOVIA
Mary Jo Jones wouldn't be alive today except for the selflessness of an organ donor. Afflicted by a lifetime of illness from cystic fibrosis, Mary Jo got the chance at a new, healthier life on July 18, 1993, when she got a double lung transplant.

Mary Jo said on the 15th anniversary of the day she got new lungs, she was thinking of the person whose death gave her new life.

Mary Jo has written long letters to the family three times, but received no response. She said she understands it may be too difficult for them to communicate with her, but she appreciates them nonetheless. "I think of all the other transplant friends I've had who didn't live to see a day like this — some who died before the transplant."

Janet Jarrard, senior public education coordinator for Tennessee Donor Services, said too many die before donor lungs are available. She said 2,103 Tennesseans are on a transplant waiting list, and of those, 20 are waiting for lungs.

"Tennessee statistics regarding lung donation and transplants are especially significant," Jarrard said. "Because a lung must be transplanted within 4 hours after removal from the donor's body, it will go to someone within a close geographical area."

That means it's likely the 20 Tennesseans waiting for new lungs will receive them from others who live in the state or nearby.

"Being a donor creates a miraculous ripple effect. Fifteen years later, Mary Jo's donor is continuing to bless her, and her family and friends," Jarrard said. "And who knows, this story about the donor's gift to Mary Jo may influence others to make that decision, and therefore save even more lives."

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network
For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

Your generosity can save up to eight lives through organ donation and enhance another 50 through cornea and tissue donation

Man beats odds after double lung transplant

2008-07-23T06:00:00.001-04:00

Here's another wonderful story about a life transformed by an organ transplant.

From NV Daily in Virginia:

By Carolyn Keister Baker
Don Appiarius, of Stephens City, wins battle after battle, and his latest triumph was no small feat.

Nearly five years after undergoing a double lung transplant that saved his life from the end stages of cystic fibrosis, Appiarius remains healthy and robust, playing tennis in the U.S. Transplant Games held in Pittsburgh last week.

Appiarius, 42, director of residence life at Shenandoah University in Winchester, was one of 35 transplant recipients representing Virginia who competed in the games July 11-16.

Not only did he compete but Appiarius came home, donning a silver medal he won in the men's singles competition in his age category. He also placed fourth with his partner, Eunice Kulesza of Midlothian, in mixed doubles. Kulesza is a liver transplant recipient.

"The whole week was wonderful," Appiarius says. "I was very happy."

Appiarius' remarkable story begins when he was diagnosed with cystic fibrosis when he was 5. Cystic fibrosis is a genetic disease that affects the lungs and digestive system and usually kills people in childhood or in early adulthood, according to a Web site of the Cystic Fibrosis Foundation and a press release from NetLife Health, a nonprofit agency that coordinates organ and tissue donation in Virginia.

Doctors were candid with his parents, Appiarius says. "Enjoy the next four years. He probably won't make it past 8," they told them.

Even with the grim prognosis, Appiarius never lost his zest for life.

"Most people, unless their spirit is broken, will choose to fight," Appiarius says.

And fight he did.

Appiarius grew up on a farm, where his family raised horses. "My family rode competitively," he says.

"I had this epiphany. Riding was great exercise for the horse but not much for me," Appiarius added.

So early in life, Appiarius made a conscious decision to get involved in athletics as a way to build his immune system.

"The healthiest people on the face of the earth are not doctors and nurses. They are athletes," Appiarius remembers thinking. "I figured that a logical approach to take was to be athletic. As it turns out, being athletic built me up to be an athlete."

When he was about 12 years old, Appiarius took up soccer and tennis at camp. "I really fell in love with tennis," he says. Appiarius eventually played tennis competitively, playing in high school and at his alma mater, Mary Washington in Fredericksburg.

Even though Appiarius continued to fight, his health eventually declined as the years passed. He found himself in the hospital at least once a year and suffered through painful operations annually to suction fluids from his lungs.

By 2001, Appiarius was not functioning well, and a year later, he needed to be on oxygen around the clock. He became so weak that ascending a few steps was life threatening, he says.

Then on Nov. 20, 2003, waiting less than a year, Appiarius received his double lung transplant and a second chance at life.

Not surprising, Appiarius continued to fight, making incredible gains after surgery. His tubes were removed hours after surgery. While most people could expect to spend up to a month in intensive care, Appiarius needed only a couple of days, he says.

Remarkably, Appiarius was back to work in two months and back on the tennis court in just over three months.

"It was quite honestly one of the most incredible feelings," Appiarius recalled.

For the first months after his operation when so many simple pleasures returned to him, Appiarius says he was "like a child in wonder."

When he was able to walk effortlessly up a flight of stairs for the first time three weeks after surgery, he and his wife, Vivian, were overcome with emotion.

"I just glided up the stairs," Appiarius says. The two looked at each other and cried.

Appiarius is among the lucky, having received a transplant while so many die waiting. An average of three people in Virginia die each week waiting to receive an organ transplant that doesn't come in time, according to a press release from LifeNet Health.

More than 2,500 people across the state are waiting for organ transplants, according to the release. Seventy-nine people are specifically waiting for lung transplants, says Dena Reynolds, media relations manager for LifeNet Health.

Held every two years, the U.S. Transplant Games is the largest assemblage of transplant recipients in the world.

Appiarius' most memorable moments during the event were hearing the stories.

"Every time we took a break [during the tennis tournament] and sat on the chairs to cool down, we inquired what brought the other person here," Appiarius says. "It was so miraculous to hear so many stories. It almost became surreal."

Having beaten the odds so many times, Appiarius meets few people with similar experiences in his daily routine.

"There is not a lot of people that really understand and appreciate the struggles," Appiarius says. "The moment you speak to someone with a like history, you can finish someone else sentences. [At the games,] it was happening moment by moment every day."

Appiarius plans "to defend his title and battle for gold in 2010" when the games will be held in Madison, Wis.

People wanting more information or who are interested in signing up to be an organ or tissue donor in Virginia, may visit the state Department of Motor Vehicles or the Web site.

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network
For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

Your generosity can save up to eight lives through organ donation and enhance another 50 through cornea and tissue donation

Livers from older donors work well in transplants

2008-07-22T18:35:00.001-04:00

From Reuters:

By Will Dunham
WASHINGTON, July 21 (Reuters) - Liver transplant patients who receive an organ from a donor age 60 or older do just as well as patients getting a liver from a younger donor, U.S. researchers said on Monday.

They said they hoped this finding would help convince transplant centers to be more willing to use livers from older donors. In 2006, around 10 percent of almost 17,000 people on a U.S. liver transplant waiting list died while waiting for a suitable donor organ.

A team at Washington University School of Medicine in St. Louis analyzed data from 489 adult liver transplants carried out there. Most patients needed a new liver because of hepatitis C virus infection, the most common reason for liver transplantation in the United States.

There was no difference in survival rates for patients who received a liver from a donor aged 60 to 78 compared to patients who got a liver from a younger donor. In the study, 88 percent of patients were alive a year later, 78 percent at three years and 69 percent at five years.

Some doctors have been reluctant to transplant livers from older donors fearing these organs may not be as healthy or work as well as those from younger donors.

The researchers noted that some previous research had suggested older livers did not provide as good outcomes in recipients with hepatitis C.

But they said their findings should reassure doctors that use of livers from older donors can be a safe way to expand the donor pool, even for recipients with hepatitis C.

Dr. William Chapman, who helped lead the study, said the results should inspire some confidence about donated livers from older donors.

"You have to use careful selection. But at least it is something they ought to consider, especially with patients dying on waiting lists and definitely not enough donor organs," Chapman said in a telephone interview.

Typically livers in transplantation surgery come from a donor who has died, although in some cases healthy people donate a portion of their liver for a designated patient.

Chapman added that he hoped the findings, published in the American Medical Association's journal Archives of Surgery, would encourage more liver donation by older people. "You don't have to be 30 to be an organ donor," he said.

The American Liver Foundation said that as of January, there were 16,667 people on a waiting list for a liver transplant. In 2006, 1,685 people died while waiting for a suitable donor, the foundation said. (Editing by Alan Elsner)

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network
For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

Your generosity can save up to eight lives through organ donation and enhance another 50 through cornea and tissue donation

Heart Transplant recipient completes Yosemite ascent

2008-07-21T06:00:00.001-04:00

From the Associated Press:

"With each ascent, the 5-foot-2, 103-pound Perkins tries to get across the message that transplants can save lives and that transplant recipients can still lead active lives"

By BRENDAN RILEY
YOSEMITE NATIONAL PARK, Calif. (AP) — A heart transplant survivor has added another first to her long string of mountaineering feats since getting a new heart 13 years ago — a dangerous 2 1/2-day climb up the sheer, 2,000-foot face of Half Dome, Yosemite National Park's famed granite monolith.

Kelly Perkins, 46, and her husband, Craig, led by big-wall guide Scott Stowe, began the climb Thursday and reached the top of the iconic 8,842-foot-high dome Saturday afternoon.

The ascent completed an important circle for her. In 1996, 10 months out of the hospital with her new heart, she finished the first of many post-transplant climbs by hiking up the easier backside of Half Dome.

"I feel great. Physically, I feel I'm stronger than I've ever been," Perkins said by cell phone from the top of Half Dome. "It was a great full circle for me to climb the other side. It was a tricky climb, but it also was a very interesting and beautiful climb."

Since 1996, Perkins has become the first person with another person's heart to summit some of the world's best-known peaks — California's Mount Whitney, Switzerland's Matterhorn, Japan's Mount Fuji, Tanzania's Mount Kilimanjaro and the face of Yosemite's El Capitan. She also climbed a remote peak in the Andes, near Argentina's border with Chile, and New Zealand's Mount Rolling Pin.

Perkins says she chose Half Dome for her latest climb "because it's broken in half but it still stands strong. There's a spirit-building message there. You may not be 100 percent, but you can still be as strong as others. I'm out there doing things and not worried about being within driving distance of the nearest hospital."

With each ascent, the 5-foot-2, 103-pound Perkins tries to get across the message that transplants can save lives and that transplant recipients can still lead active lives. She also wrote a book, published in 2007, about her struggles, achievements and goals.

Perkins' heart started failing in 1992 after she and her husband returned from a backpacking trip in Europe. The former Lake Tahoe resident, now living in Laguna Niguel, Calif., contracted a virus that made her so weak that Craig had to carry her around their home.

Found to have cardiomyopathy, which inflames heart muscles, Perkins got a new heart at UCLA Medical Center in November 1995 from a woman in her 40s who died in a fall from a horse.

Dr. Jon Kobashigawa, medical director of UCLA Medical Center's transplant program, said he knows of no other woman with a heart transplant who has achieved one high-elevation climb after another, as Perkins has. He likened her to "a type of Lance Armstrong."

Perkins faces problems not encountered by other mountaineers. Transplanted hearts usually lack nerves linking them to the brain, which means Perkins' heart doesn't know when her muscles need more oxygen. She suffers severe shortness of breath until she can establish a pace.

But Kobashigawa said Perkins, through an arduous exercise regimen, may have regrown some of those nerves, enabling a partial response to physical demands on her donor heart. "Sheer will" also is a key factor, he said.

On her ascents, she also has to bring something needed by few other climbers — a backpack crammed with prescription drugs, medical supplies and blood-pressure monitoring gear.

"It's not that I'm a great climber or super-athletic," she said. "I just do my best. What it really represents is that I have the freedom and opportunity and good health to do this, to go out and fully live life, not sit back."

"Someone asked me how long I'm going to do this, now that I'm 46 years old. What am I supposed to do? Roll over and play dead? My time was up before. Now I'm fully functioning and stronger than I've ever been. I'm not slowing down in any way until my body finally tells me, 'No.'"

Visit Kelly's web site for stories and photos of her other achievements.

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network
For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

Your generosity can save up to eight lives through organ donation and enhance another 50 through cornea and tissue donation

Single-incision surgery is boon to organ transplants

2008-07-20T14:54:00.003-04:00

This exciting new technique may bode well for the thousands of patients waiting for a kidney transplant. Potential living donors who were reluctant to go through with it due to the long recovery time for traditional surgery may now be willing to be a donor.

From The Plain Dealer, Cleveland, Ohio:

By Angela Townsend
By year's end, virtually all kidneys removed for donation at the Cleveland Clinic will be removed through a single incision at the belly button.

That's Dr. Inderbir Gill's prediction.

He should know. Since November, the chairman of the urology department at the Clinic's Glickman Urological and Kidney Institute has performed the operation 11 times, most recently on Thursday, after which he said, "It went beautifully."

More than 90 percent of donor kidneys in the U.S. are now removed with standard laparoscopic techniques that have been around for more than a decade.

"As people become more familiar and comfortable with it, and as our data is substantiated by others, virtually all will be done single port," said Gill, who is currently training other Clinic physicians in the new technique. "Patients are going to drive this technology."

That could mean more people -- previously turned off by the long recovery time -- willing to become kidney donors.

More than 80,000 Americans are awaiting kidney transplants.

Last year, there were about 13,300 kidney donors in the United States, and about 45 percent were living donors, according to the Organ Procurement and Transplantation Network. Gill's single-incision patients, and the recipients of their kidneys, have recovered well. "So far, we have not had any complications," he said.

A report on the first four patients appears in the August issue of the Journal of Urology. Preliminary data from the first nine donors showed they recovered in just under a month, and have been going back to work sooner than that, in about 17 days. Donors who underwent the traditional laparoscopic procedure with four to six small incisions at the abdomen took just longer than three months to recover, and returned to work in 51 days.

The method takes advantage of the belly button to avoid a visible scar... Read the full story.

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network
For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

Your generosity can save up to eight lives through organ donation and enhance another 50 through cornea and tissue donation

Transplant recipient meets donor family

2008-07-19T05:43:00.000-04:00

From News10Now in New York:

By Katie Morse
ONONDAGA COUNTY, N.Y. -- This past weekend, Robert Juneau, a recipient of a double lung transplant, competed in the 2008 Transplant Games in Pittsburgh. After winning two medals, Juneau went back to his hotel Tuesday night, where he began talking to a man he met outside.

"I noticed he had a pin on his shirt of a young man and I asked him if he was one of the donor families that was there and he told me that he was, that his son had died in an accident back in March of 2007," said Juneau.

Tim Packhem described his son, also named Tim, as a fun-loving high school student. He died in a skateboarding accident one day before Robert's transplant.

As the strangers kept talking, the coincidences got stronger, especially when Robert's wife mentioned a letter she had written to his donor family.

"At one point my wife was repeating one of the lines she had written and the family finished that sentence. At that moment we realized that I had their son's lungs, that their son had saved my life," Juneau said.

The chance meeting was nothing short of a miracle and Tim Packhem is convinced he knows whose idea it was.

"I honestly believe that my son, because it was a Tuesday night and the All-Star game was on and being the big baseball fan he was, he was watching the All-Star game and somehow he saw us getting together and he said 'I'm gonna set it up,'" said Tim Packhem.

"You think about this as a donor mom. You think about that moment. You think about what it will be like," said Paula Packhem, Tim's mother.

And both families realize Tim's amazing gift has brought them together forever.

"Before the games, I had that gold and silver laying on my chest. Now that's where Tim is. And I gave that gold and silver to his mom and dad, because I wasn't the one alone who won those medals. It was Tim and I who won those medals," said Juneau.

Tim Packhem told his parents he wanted to be an organ donor when he was applying for his driver’s license. He also donated his heart, kidneys and liver. He was 17.

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network
For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

Your generosity can save up to eight lives through organ donation and enhance another 50 through cornea and tissue donation

Woman's Double-Lung Transplant Documented on 'Hopkins'

2008-07-18T10:24:00.003-04:00

From WJLA.com in Virginia:

A double-lung transplant is a potentially fatal surgery which, in itself, if daunting, but a Stafford woman, who underwent the operation in 2007, had the added pressure of being followed through the process by a film crew from the series "Hopkins."

In May 2007, Brenda Thompson allowed a "Hopkins" crew to go behind-the-scenes of her double-lung transplant and one year later, she watched on national television. "I watched it, didn't seem real at first. Did that really happen? Did all those things really happen?"

Watching the show forced Brenda's family to relive difficult moments, both before surgery and during. "When they say kiss your loved one now, don't know if last time kiss goodbye or not," said Larry Thompson, Brenda's husband. "When the lungs inflated, it was like, wow," said Brenda.

Although reluctant to be part of the show at first, Brenda changed her mind when she learned it might encourage viewers to become organ donors. "I kept in back of my mind that this may help somebody else."

Brenda's three children singed up to become donors, thankful to the person whose lungs saved their mother's life. "There really are no words to express how grateful we are for something like that," said Leah Loveless, Brenda's daughter.

Before the transplant, Brenda couldn't walk ten feet without being out of breath, even on oxygen. One year later, she is off the oxygen, walking without getting winded and thrilled to have more time with her family. "I'm good. I'm doing good. I'm happy. This is what I live for. Right here, my family."

After the operation, Brenda required another surgery to control acid reflux and she caught a virus from the transplant. Now with the help of about 30 pills a day, she's healthy and hoping to one day personally thank her donor's family.

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network
For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

Your generosity can save up to eight lives through organ donation and enhance another 50 through cornea and tissue donation

Organ Transplants Linked to Cancer

2008-07-17T07:45:00.001-04:00

(Ivanhoe Newswire) -- Organ transplants can save lives, but new research shows they might also put recipients at risk of developing cancer.

New research at the Harvard Medical School revealed the immunosuppressive drug cyclosporine ramps up vascular endothelial growth factor (VEGF), causing new blood vessels to grow and feed tumors. Tumors that develop after a transplant can come from three sources: viruses from the organ donor, pre-existing cancer or recurrence of previous cancer.

The study revealed a potential treatment: anti-VEGF therapy, which could inhibit cancerous cell growth. For the 15 to 20 percent of patients who develop cancer in the decade that they received transplants, this could be great news. Researchers found the anti-VEGF therapy drastically reduced tumor growth in mice implanted with human kidney cancer cells.

VEGF expression is necessary in the immediate stage after transplantation, but after organ stabilization, lowering VEGF expression is important to “prevent tumor growth and keep cancer at bay,” Soumitro Pal, Ph.D., an assistant professor at Harvard Medical School’s Transplantation Research Center at Children’s Hospital in Boston, was quoted as saying. He added, “We would need to figure out how to balance benefit and risk to keep cancer at bay.”

SOURCE: Cancer Research, 2008;68,5689-5698

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network
For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

Your generosity can save up to eight lives through organ donation and enhance another 50 through cornea and tissue donation

Indiana's Innovative Organ Transplant Program Leads the Nation

2008-07-16T06:00:00.001-04:00

From Nurse.com:

"Clarian Transplant is also the only center in the world to perform lung/pancreas transplants, a pioneering procedure to improve and extend the lives of persons living with cystic fibrosis"

Clarian Transplant in Indianapolis has the highest volume pancreas transplant program in the United States. It has transplanted more than 3,500 organs since 2001, which has saved and improved the lives of thousands of adults and children. The pancreas transplant program has seen the largest increase, with 84 transplants performed in 2007, up from seven in 2001.

"We have one goal within our center, and that is to see no one die waiting for an organ," says Jonathan Fridell, MD, director of pancreatic transplantation. "Each new pancreas represents one life saved, and [the patient[']s] quality of life is improved."

Currently, Clarian Transplant has some of the shortest wait times in the country; for example, the average wait for a pancreas transplant is just over two months, compared to the national average of 16.8 months

Above-average outcomes and high volume prompted the U.S. Department of Health and Human Services, Health Resources and Services Administration, Division of Transplantation to learn more about Clarian Transplant. HRSA identified Clarian's transplant program as one of eight programs in the country to be replicated because of its best practices associated with high rates of organ acceptance and transplantation.

Clarian Transplant is the only transplant center in Indiana, and one of very few in the nation to perform adult and pediatric organ transplants. Clarian Transplant is also the only center in the world to perform lung/pancreas transplants, a pioneering procedure to improve and extend the lives of persons living with cystic fibrosis.

Although Clarian performs a high number of transplants, it knows the availability of organs is dependent upon the precious gift of life from organ donors. Clarian Transplant works closely with the Indiana Organ Procurement Organization to help educate the public about the gift of organ donation.

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network
For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

Your generosity can save up to eight lives through organ donation and enhance another 50 through cornea and tissue donation

Doctor has double-lung transplant due to cystic fibrosis

2008-07-15T06:00:00.003-04:00

From the Telegraph-Journal, New Brunswick, Canada:

By Erin Dwyer
Hampton, NB - Dr. David Salgado spent a career making other people better.

Week in and week out, he saw patients, diagnosed diseases and prescribed treatments -all the while battling his own life-threatening disease.

Dr. Salgado was diagnosed as a child with cystic fibrosis, a fatal genetic disease that causes the body to produce thick, sticky mucous, which clogs the lungs and leads to life-threatening lung infections. Last August, the 48-year-old family physician in Hampton had to give up his medical practice because his own health had deteriorated.

After 23 years of caring for his some 3,000 patients, Dr. Salgado had become the patient, relying on oxygen 24 hours a day.

"I was dying," he said in an interview.

Today, Dr. Salgado's lifelong battle with the disease is over. After a seven-month stay in Toronto where he underwent a double-lung transplant, he's home recuperating, spending time with his family and doing some of the things that a year ago seemed impossible.

Like kayaking. Doing yard work.

"That's one of my favorite activities," he said. "I still have to rely on my family and my wife to do the hard, continuous work. But I'm good at telling people what to do."

Former patients in Hampton say he is a kind and generous doctor who goes beyond the call of duty. He is a humanitarian, they say, but above all else, he's humble and private. On this day, however, Dr. Salgado spoke about his surgery and his recovery as a way to thank his former nurse, Christine Atherton, who "held the fort" while he was in Toronto, and the hundreds of Hampton residents and the Saint John medical community who rallied behind him and raised over $50,000 to help pay for his medical costs. Because of his congenital disease, he was never able to secure health or life insurance.

"I can't thank them enough. I'm not sure if I would have gone through with the whole process if it had not been for the community's support."

Dr. Salgado and his wife Sally knew at some point they would have to face his disease head on. After all, the median age of survivors (with cystic fibrosis) in Canada is 37 and he was already well into his 40s. Still, three years ago, the prospect of requiring a double-lung transplant seemed a world away.

"Three years ago, I was living a very active life and keeping up with my family and friends," he said.

In the early months of 2007, that all changed. His health began to deteriorate. Breathing became more difficult. By August, he was forced to close his practice and go on oxygen 24 hours a day. Things looked bleak. Without insurance, trying for a transplant would cause financial hardship to his family. And then there was simply the disruption to their lives while he waited to qualify.

"My wife and I had spoken. We knew this was coming," he said. "But tying your family up with this whole process, a year, two years or three years, it wouldn't be easy. And there were financial considerations. It wasn't something we would have considered."

But the turning point was when the community of Hampton rallied behind him.

When some of his patients learned he was failing fast, they organized a dance and a silent auction and set up a bank account for donations. Former mayor Jim Hovey and former patient Paula Perry spearheaded the event. In no time, they raised nearly $50,000. In the new year, the Saint John Medical Society held a fundraiser, spearheaded by Dr. Michael Morse and Dr. Greg MacLean, and raised yet more funds.

Until the Hampton fundraiser, Dr. Salgado was somewhat resigned to die with the disease. But the community's response - and the financial assistance - motivated him to apply for a transplant.

"It's been difficult to personally say thank you to everybody because there were so many."

In December, Dr. Salgado and his wife moved to Toronto to await a transplant. His brother, Dr. Mike Salgado, remembers not having any expectations prior to the surgery.

"You know the odds are sort of against you in terms of finding a donor, finding the right size donor. There's a lot of factors that can prevent you from getting a transplant. So all of these things are weighing on the back of your mind while you're waiting for the transplant. And his health was not that great leading into the transplant. We were all a little concerned as to whether he would get the transplant or not, and find a match in time."

Three months after arriving in Toronto, Dr. Salgado got the call that they had found a donor.

"It was quick because I was dying," he said. "It was do or die. Most people are obviously very sick and they don't get on the transplant list unless you're likely to die within a year," he said.

"In my case, when I finally arrived there, they realized I was sicker than they thought and was deteriorating faster than they thought."

Dr. Salgado remembers little about the surgery. He was given anaesthetic at 6 a.m. on a Thursday and awoke the following afternoon.

"It was like I had a nap," he said. "I felt good. I felt clear headed."

For 24 hours after surgery, Dr. Salgado was on a respirator waiting for the lungs to recuperate from the traumatization of the transplant. In some cases, it takes them two weeks to recover. In his case, he was walking around and breathing with a new set of lungs in less than a week.

Dr. Salgado can't say enough about the Toronto General Hospital's Multi-Organ Transplant Program. And he can't say enough about the organ donation program.

"I wouldn't be here if the program weren't what it is."

His brother shares the same respect for the donor program.

"I definitely made sure our donor cards were all signed and that my intentions were clear. Organ transplants have really come a long way in the last number of years and that's coming from a physician's perspective. It's really amazing what they can do and anyone thinking of organ donation, this is certainly an example of a real success story."

Still, Dr. Salgado wants to remain respectful of the donor and his or her family whose selfless donation has allowed him to live. He doesn't know anything about the person who donated the lungs. It's kept confidential. And he's uncomfortable about talking about it. But Dr. Salgado said he holds a special place for the donor in his heart.

"Of course I do. Every breath I take I thank the donor for the opportunity to be with my family. But it's not something that I dwell on. I have to pinch myself every once in awhile to see if this is real because it doesn't even feel like anything happened. Other than some sore muscles and some stiff joints, I feel like the same person I was a year ago.

"It's interesting," he added. "I arrived home and I looked out my back window at the back garden we have here. And I thought, we have to prune this tree or do something about that hedge, or what have you. It's as though I've picked up where I was when last healthy and the last year or year and a half is something that I've chased from my mind. It didn't happen. I don't like to dwell on the suffering over the last year.

"There is hope," he said, "that we can pick up and get on with our lives in the way that we were before and sharing time together."

Still, Dr. Salgado is cautious about looking too far into his future. He knows he runs significant risks for complications, like pneumonia and rejection. And some of the drugs he's on make him feel like he's suffering from the flu and are hard on his kidneys.

"It's like you're waiting for the other shoe to drop. But I'm remaining positive. I've always had a positive outlook."

So positive that's he's aiming to reopen his practice in the new year.

"I feel ready to open it now, but if I spend all my energy on opening my practise, I'm not focusing on my recovery," he said. "So I'm going to spend the next six months rehabilitating. It will be the first summer I've had off."

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network
For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

Your generosity can save up to eight lives through organ donation and enhance another 50 through cornea and tissue donation

Transplants in Ontario Year-to-Date

2008-07-15T05:16:00.000-04:00

Here are the total transplants performed in the Province of Ontario this year to date followed by waiting list totals, as posted on the Trillium Gift of Life Network (TGLN) web site. Check this site often as figures are updated daily.

At the Trillium site you will find more statistics and you can also compare this year's transplants to the 10-year history and get an idea of how we're doing. For example, for all of 2006 there were 87 lung and heart-lung transplants performed and by comparison that total was well surpassed in 2007 with 100 lung and heart-lung transplants done in Ontario.

Liver - From Deceased Donors 73
Liver - From Living Donors 28
Heart - 31
Kidney - From Deceased Donors 124
Kidney - From Living Donors 113
Lung 42
Heart - Lung 1
Pancreas 4
Small Bowel 1
Kidney - Pancreas 10
TOTAL TRANSPLANTS PERFORMED 427

WAITING LIST YEAR-TO-DATE
Liver 340
Heart 46
Kidney 1198
Lung 48
Heart Lung 4
Pancreas 23
Small Bowel 4
Kidney Pancreas 46

TOTAL ON WAITING LIST 1709

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

Your generosity can save up to eight lives through organ donation and enhance another 50 through tissue donation

Heart & kidney transplant recipient dies after ambulance got lost

2008-07-14T06:00:00.001-04:00

A 21-year-old English woman died after the ambulance taking her to the hospital got lost due to a faulty navigation system, the Daily Mail reported.

From FoxNews.com:

The paramedic attending to Kay Gadsby had to climb into the front seat to help the driver find the hospital, while the terrified 21-year-old repeatedly asked her mother, "I'm not going to die, am I," according to the report.

Gadsby's father, who was initially following the ambulance in his car, arrived at the hospital ahead of the wayward ambulance.

An ambulance was called to Gadsby's home in Mablethorpe, Lincolnshire after she collapsed. She has long suffered from organ failure and had a heart and kidney transplant 10 years ago. She had a second kidney transplant five years ago and was on a waiting list for a third kidney transplant.

The ambulance got lost on its way to the Diana Princess of Wales Hospital in Grimsby, about 30 miles from Gadsby’s house, because its navigation failed and the driver had only been to the hospital once before, Gadsby's parents told the Daily Mail.

"We have spoken to doctors and nobody can really say either way if Kay would have survived if they had not got lost," said Gadsby's father, Russell. "But the delay in getting her to hospital has made the situation worse." Click here to see pictures of Gatsby and more on this story from the Daily Mail.

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network
For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

Your generosity can save up to eight lives through organ donation and enhance another 50 through cornea and tissue donation

Transplant trailblazers

2008-07-13T06:00:00.000-04:00

I'm posting this lengthy article because of the inspiration and hope it offers for anyone faced with the prospects of an organ transplant or who has already gone through one. Here is the story of four women who have celebrated 25 years of surviving a liver transplant.

From The London Free Press in Ontario, Canada:

Four women, four transplants, one surgeon -- and 100 years of extra life. The first four Canadian women to survive liver transplants have plenty of reasons to celebrate today, 25 years later. Free Press medical reporter John Miner looks back on the pioneering surgery that saved them and put London on the map.

By JOHN MINER
They were young, scared and knew they were near death.

Twenty-five years later, they're regarded as heroes -- the first women to receive liver transplants and survive in Canada.

"They stared death in the face and came out winners. Each one of them was a pioneer and a heroine in her own way for what she did," said London transplant surgeon Bill Wall.

They also put London on the map as an international transplant center at a time when many other hospitals were suspending their transplant programs because of early failures.

The London Health Sciences Centre, which now includes University Hospital where the surgeries took place, hopes to bring the women together this summer to celebrate their historic surgery and the lives they went on to live.

Two of the women came through the surgery to pursue careers as nurses, one still working in London and the other in Thunder Bay.

A third is an X-ray technologist in LHSC's cardiac program and the fourth returned home to Cape Breton, N.S., to raise a family of four.

"Some days you have drudgery and disappointments and I just think of those ladies. You chat with them on the phone, and they serve as such an inspiration, not only to myself, but to all of us who come in contact with them," said Wall, who performed the life-saving surgery on the women.

"They are spectacular examples of what can be accomplished with transplantation."

Going into their operations, the four women were very aware the first three attempts at liver transplants in Canada had ended with the patient's death.

But without the surgery, the women faced certain death.

"It was pretty scary, it was really scary," said Jane Johnson, who was 25 when she had her liver transplant.

"Because I was first, it was just uncharted waters for everyone. We just had to keep going on the faith."

Wall said he's not surprised the women were fearful.

"Absolutely, it was experimental," he said.

While other medical centres in Canada that tried liver transplants had suspended their programs by the early 1980s, London kept going.

The breakthrough that helped the women survive 25 years ago came with the discovery of cyclosporine, an anti-rejection drug.

"Cyclosporine represented a quantum leap in transplantation because of its selective effect on the immune system in preventing (organ) rejection," said Wall. "But we didn't have effective ways of monitoring the blood levels of the drug. We were basically flying by the seat of our pants in the way we dosed it."

Today, with additional anti-rejection drugs and sophisticated monitoring techniques, transplant patients no longer face the daunting prospects the four women did a generation ago.

"Transplantation is very reliable today, it is no longer experimental," said Wall. "The results are such that we expect success in 90 per cent or more of cases for most organ transplants."

The problem now is one that didn't exist for the women -- a shortage of organs.

"When those ladies had their transplants, there was enough donated organs because the numbers being done were relatively few.

"Now, there are so many patients waiting for organ transplants," said Wall.

"The disappointing thing today is we have this wonderful, life-saving treatment and we can't give it to everyone who needs it."

HEATHER FISHER
Occupation: Nurse
Home: London
Transplanted: April 23, 1983
Age at time: 29

Quote: "It truly does give you a second chance at life and you make the most of it. For me, it honours the person that gave me their liver."

Heather Fisher knew two things in 1983 when she worked as an intensive care nurse at a London hospital.

She knew the city's fledgling organ transplant program had done several liver transplants with only one patient surviving. She also knew that without a transplant, she had only a short time to live.

"When you are told that, you take the bull by the horns and move forward," she said.

Fisher first became ill with an auto-immune disease that attacked her liver when she was 14. Ending up in a coma, she almost died.

The disease left her with a liver so badly damaged, it could never repair itself.

By age 29, her liver had deteriorated to the critical stage.

The first time Fisher was called to the hospital for a transplant turned out to be a trial run.

"They said, 'Sorry, Heather, not a match.' "

The next time, she was transplanted.

Fisher said the operation went "fabulous, absolutely fabulous," but she still had a few bumps in her recovery. It was two months before she was discharged from hospital.

Now, liver transplant recipients are discharged in about two weeks.

Fisher said she's never looked back since her operation. Seven months after the surgery, she was back on the job working 12-hour nursing shifts.

"I went back to a normal life, able to work, able to do all kinds of things, any sporting activities I wanted to do.

"I really don't feel I have anything that prohibits me from doing what I would like to do,"she said.

Fisher continues to work as a nurse clinician for acute pain at Victoria Hospital.

JANE JOHNSON
Occupation: X-ray technologist
Home: London
Transplanted: Nov. 17, 1982, the first to survive a liver transplant in Canada
Age at time: 25

Quote: "It was pretty scary, it was really scary. Because I was first, it was just uncharted waters for everyone. We just had to keep going on the faith."

When Jane Johnson fell ill with auto-immune hepatitis at 23, she was told she might need a liver transplant a long time in the future.

"They discussed it with me, but said, 'Don't worry, it is 10 years down the road. By then there will be so many advances, there will be an easier process in place to have this done," she recalled.

Two years later, she received the shocking news she needed a transplant right away because of her rapidly deteriorating liver.

There'd never been a successful liver transplant in Canada, and few had been done anywhere.

"It was pretty scary, it was really scary," said Johnson. "Because I was first, it was just uncharted waters for everyone, we just had to keep going on the faith.

"I kind of thought, 'If I am going to die, I am just going to sleep and I won't wake up.' "

The good news was that the fast onset of her illness meant the damage was isolated to the liver. Unlike earlier transplant patients who'd died, her other organs were in good shape.

"I would have been the prime candidate to survive if one could survive," she said.

Johnson survived, but it was rough going.

After her first transplant, an artery to the new liver clotted. When surgeons operated to bypass the clot, they found parts of the liver were dead.

On Nov. 27, she had a second transplant.

Johnson remembers the surgeon, William Wall, visiting every morning and night and her family every day from St. Marys and Dorchester.

"That is what got me through. I just felt I couldn't disappoint everyone who worked so hard to save my life," she said.

Johnson was four months in hospital before being well enough to be discharged.

She now works as an X-ray technologist at LHSC.

"I am not a daredevil, I've tons of friends, love football, sports, going to shows. I just try to live my live so the person who gave me this opportunity would be proud of the life I am living."

JANE NEUDORF
Occupation: Nurse
Home: Thunder Bay
Transplanted: June 17, 1983
Age at time: 29

Quote: "June 17 is actually a second birthday for me. I can't help but remember it every day."

An ailing Jane Neudorf was on her way to vacation in Hawaii with her mother when she stopped in Winnipeg to see a specialist.

She didn't get any farther.

"He said, 'You can't go to Hawaii.' I said, 'Yes I can, I am going with my mother. She has the ticket.'

"Then he called my mother into the waiting room. He said, 'You can't take her, she is going to die on the flight.'"

Following rounds of medical tests, Neudorf was given a prognosis she couldn't easily accept.

"He told me there was no hope for me, that I would be passing away. It was basically, you are going to die, accept it."

Neudorf had read an article in Life magazine about pioneering liver transplants performed in Boston. When she raised the possibility of a transplant, with her doctor, she was told the work was just on the edge of discovery and there wasn't much real hope.

"I said to him, 'What do you mean hope? I don't have anything now, so what do I have to lose?"

She insisted the doctor write to the Boston surgeon. The next time she saw him, he was excited to tell her he had a reply and there was a surgeon in Canada who was actually doing liver transplants, a William Wall in London.

"I was so excited, I was quite overjoyed. I said, 'Wow.' I thought if I'm going to die, I may as well die in Canada. This is my home.'"

After her surgery in London, Neudorf returned to her home in Dryden and became a nurse.

Later moving to Thunder Bay, she now works full time on a rehabilitation floor with patients who have had hip and knee surgery.

MARJORIE KEATING
Occupation: Homemaker
Home: Cape Breton, N.S.
Transplanted: Aug. 28, 1984
Age at time: 34

Quote: "They were just excellent," she says of the caregivers at University Hospital.

On the flight to London from Nova Scotia for her liver transplant, Marjorie Keating lost consciousness.

"I had got really bad," said the Cape Breton mother of four children who were six, 10, 12 and 13 years old at the time.

She was 34.

As her condition deteriorated in the weeks before her transplant, Keating's husband pushed medical officials to take action.

At the time, London was the only place in Canada performing liver transplants, an operation many viewed as entirely experimental.

"It was scary," said Keating.

But like other early transplant recipients, she had no other option.

It didn't go smoothly.

Keating's body rejected the first liver transplant and she required a second transplant.

Decades after her surgery, Keating still has praise for the medical care she received at University Hospital.

Keating said her health has been great in the years since the transplant.

A TRANSPLANT LEADER

Within six months of opening in 1972, University Hospital performed its first kidney transplant. Added to that were liver transplants in 1977, heart transplants in 1981, small bowel transplants in 1988 and lung transplants in 1989. The first bone marrow transplant was performed in 1989 to treat a patient with leukemia.

By 1987 the hospital established itself internationally as a center for multi-organ transplantation.

Transplant firsts at UH:

1977: First liver transplant in Ontario.

1981: First heart transplant in Ontario.

1983: Canada's first heart-lung transplant.

1983: First pediatric heart transplant in Ontario.

1984: First pediatric liver transplant in Ontario.

1988: World's first liver-bowel transplant.

1993: Canada's first parent-to-child living donor liver transplant.

1997: World's youngest multi-organ recipient./li>
2000: Canada's first adult-to-adult living donor liver transplant.

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network
For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

Your generosity can save up to eight lives through organ donation and enhance another 50 through cornea and tissue donation

Firefighter raising funds for brother's lung transplant

2008-07-11T06:00:00.001-04:00

From the Community Times in Maryland:

By SUSAN C. INGRAM
Just two years apart in age, brothers Richard Nichols, 44, and Robert Nichols, 46, have followed similar paths in life.

In October, Richard who lives in Owings Mills, will have clocked 29 years as a volunteer firefighter at stations across the county including, Cowenton, Middle River, Jarrettsville, Liberty Road, and for the last year at Glyndon Volunteer Fire Co.

Robert was a career firefighter with Baltimore County, serving as a paramedic at the Middle River and Hillendale stations. His wife is also a paramedic.

But recently the brothers’ paths diverged when Robert was diagnosed with a lung disorder that is robbing him of the ability to breathe. He was forced to retire from the county fire department last year and go on disability.

“He was diagnosed with Alpha-1 antitrypsin deficiency,” Richard Nichols said.

According to the Alpha-1 Association, a nonprofit education and advocacy group for people with the disorder, the Alpha-1 protein protects the lungs from overproduction of an enzyme that in healthy people destroys damaged cells. But in people with a deficiency, the enzyme can begin damaging healthy lung tissue.

Such people are often misdiagnosed with asthma, emphysema or other breathing disorders, according to the association.

Such was the case with Robert Nichols, who was initially diagnosed with asthma and bronchitis.

“But he’d never had an asthma attack – ever,” his brother Richard said.

Last fall, however, after a severe attack of shortness of breath he went to the emergency room. Through subsequent blood tests he was finally diagnosed with the Alpha-1 deficiency at the beginning of this year.

Since the deficiency can run in families, several family members were checked, including Richard, who discovered that he also has the deficiency but has no symptoms and may never develop any lung problems.

Currently, Robert has less that 50 percent capacity in one lung and less than 60 percent in the other. He is on the list as a candidate for a double lung transplant with University of Maryland Medical Center’s lung transplant program.

Richard, along with Kim Tsirigos of Beef Shakes in Reisterstown, is organizing a benefit bull and shrimp roast July 20 to raise funds for medical expenses.

“We’re all stressed,” Richard Nichols said. “It’s been a twisted nightmare.”

But he said that many people, especially firefighters and their families, have stepped forward to help Robert and his family.

Tsirigos grew up behind Reisterstown Volunteer Fire Co. Her father was a volunteer firefighter, until, she said, “something happened to his lungs.”

“I have a soft spot for firefighters,” Tsirigos said.

The benefit is Sunday, July 20, from 1-6 p.m., at the Exhibition Hall at Timonium Fairgrounds. There will be food, a silent auction, raffles and games. Tickets are $35. For more information, or to make a donation, contact Richard at 410-925-6227 or e-mail rknichols@comcast.net.

For more information, go to Alpha1.org.

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network
For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

Your generosity can save up to eight lives through organ donation and enhance another 50 through cornea and tissue donation

Toronto Lung Transplant Support Group Meetings

2008-07-11T05:42:00.000-04:00

Support & Education Group Meetings have a pre-transplant focus and are held Wednesdays at 11AM, 11th floor west, New Clinical Services Building (NCSB), Toronto General Hospital.

Meetings are intended for pre-transplant patients/families and early post-transplant patients. Other post transplant patients are invited to attend when they are in from out of town for assessment or any meeting where there is a speaker of interest to them.

Topics are subject to change without notice

Cepacia negative patients attend from the 1-15th of each month

Cepacia positive patients attend from the 16th -end of each month

Support people may attend all meetings

JULY 2008

July 2nd - Cancelled - location unavailable

July 9th - Speaker: Seema Boodoosingh, Infection Control Practitioner; will discuss her role within the tx program, infection prevention & control measures pre & post-tx

July 16th - GENERAL MEETING

July 23rd - Speaker: A team member from the ICU; will discuss aspects of care in the ICU post-tx

July 30th - Speaker: Dr. Cecilia Chaparro, Respirologist; will discuss medical aspects of lung tx

AUGUST, 2008

August 6th - Speakers: Debbie Zogalo RN, Josie Dorosz RN & Meny Davies RN, Post-tx coordinators; will discuss their roles with the lung team as well as post-tx care

August 13th - GENERAL MEETING

August 20th - SPECIAL EVENT - Dr. Shaf Keshavjee, Sassan Azad and Mareclo Cypel will discuss the upcoming Help ll - Ex Vivo Lung Perfusion Study (This exciting news coming from lung transplant research at Toronto General has importance for us all. I hope you can attend. I'll see you there. Merv).

August 27th - GENERAL MEETING

SEPTEMBER, 2008

September 3rd - Speaker: A team member from transplant pharmacy; will discuss tx medications & answer questions

September 10th - GENERAL MEETING

September 17th - GENERAL MEETING

September 24th - Speaker: Mark Hinchcliffe, Chartered Accountant; will discuss tax deductible medical expenses and tax credits

OCTOBER, 2008

October 1st - GENERAL MEETING

October 8th - Speaker: Dr. Lianne Singer, Medical Director, Toronto Lung Transplant Program; will discuss medical aspects of lung tx

October 15th - Speakers: Susan Chernenko APN & Nikki Marks APN; will discuss their role in the lung team, as well as aspects of lung tx

October 22nd - GENERAL MEETING

October 29th - Speakers: Cathy Whytehead RN & Michelle Baumgartner RN, Pre-tx Coordinators; will discuss their roles within the lung team, as well as pre-tx care

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network
For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

Your generosity can save up to eight lives through organ donation and enhance another 50 through cornea and tissue donation

Fundraiser to assist double-lung transplant patient

2008-07-10T16:26:00.004-04:00

Gloria Simon has the same lung disease that I had, Idiopathic Pulmonary Fibrosis (IPF) and I'm pleased to post this announcement about her need for help with expenses. Depending on how long she will be on the waiting list, total living and travel expenses could reach $60,000 or more.

From the Mirimichi Leader in New Brunswick, Canada:

The Eel Ground First Nation will host a Gloria Simon fundraising day on Saturday, July 12 from 9a.m. - 9p.m.

The list of activities, all being held at 47 Church Road, include softball, washer toss, barbecue, sack race, dunk tank and much more.

All monies raised is for living expenses while Gloria awaits a double lung transplant in Toronto, Ont. She is 33-years-old and suffers a rare and incurable condition idiopathic pulmonary fibrosis and needs a double lung transplant.

Charitable reciepts are also available. For further imformation please contact Joe Crossman at 506-622-8710..

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network
For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

Your generosity can save up to eight lives through organ donation and enhance another 50 through cornea and tissue donation

Jackson offers 2nd chance to teen who needs transplant

2008-07-09T16:11:00.002-04:00

From the MiamiHerald.com:

BY CAROL MARBIN MILLER
A disabled foster child whose quest for a life-saving liver transplant was rejected by a Central Florida hospital because he has no stable home is expected to arrive in Miami Wednesday to begin testing with Jackson Memorial Hospital's organ-transplant team.

Administrators with the Department of Children & Families got word Tuesday morning that the 15-year-old boy from Pinellas County had been cleared by doctors at Jackson to be evaluated for a new liver. The boy, who suffers from mental retardation, still must be approved by the organ team before he is listed on a national database to wait for a liver.

"f I have to, I'll drive him myself," Nick Cox, DCF's top administrator in the Tampa Bay area, said Tuesday. "They have not only cleared him, they have scheduled time for him to come down [Wednesday] to get tested."

On Tuesday, administrators of Pinellas' private foster care agency, Eckerd Community Alternatives, arranged for the boy to be driven to Miami along with staff members who will care for him during testing, said Marcie Biddleman, the agency's vice president.

TEMPORARY HOME

Eckerd administrators also have located a home where they think the boy can live while he recovers from the transplant, if Jackson agrees to perform the surgery, Biddleman said. "Our primary focus today was to get this child down there," she said. "We've beem pretty busy today trying to make sure he's OK."

Cox said the boy had been removed from a waiting list for available livers by doctors at Shands Hospital in Gainesville. The doctors said the boy was a poor candidate for an organ transplant because child welfare workers could not ensure he would remain in a permanent, stable home during recovery.

The staff at Shands Hospital declined to discuss the boy's case Tuesday.

"We take the role of transplant center very seriously," said LeAnne Jones, interim director of Shands' abdominal transplant program. "We are committed to making compassionate and responsible decisions about our patients, and the management of the life-saving resource of donated organs.

"We truly believe the worst thing you can do is perform an organ transplant on a patient who has a high probability of an unsuccessful outcome," Jones added. ``Doing so not only puts that patient at risk of death, but another patient on the wait list is denied a chance for a successful outcome and can also die.''

Jackson also declined to discuss the youth's case, citing privacy laws. Spokeswoman Lorraine Nelson said in a statement that "any patient in need of a transplant will be evaluated. This does not mean that the hospital has accepted the patient or that the patient will receive a transplant."

Kenneth Goodman, who heads the University of Miami's bioethics program, said he was not aware of any other case in which a foster child was rejected for a donor organ because he lacked the stability necessary for post-surgical recovery. It is well accepted among medical ethicists, he said, that people with disabilities are entitled to the same medical treatment, including transplants, as the nondisabled.

Arthur Caplan, chairman of the medical ethics department at the University of Pennsylvania's medical school, said in cases such as this, it's the state's duty to ensure the boy is provided the stability he needs to accept and protect his new liver.

`THE EXTRA MILE'

"I think it's their job to get him to an environment where he's not asked to die because his parents haven't gotten him into a stable environment," Caplan said. Shands' decision, he said, "makes no sense at all to me, ethically. You've got to go the extra mile with kids and get them into an environment where the transplant can work."

Children's advocates also directed their anger Tuesday at the state Agency for Persons with Disabilities, which has declined to accept the boy into a program that offers services to disabled people who live outside large institutions.

Spokeswoman Melanie Etters said the agency will do everything it can to ensure the teen receives proper medical care. ''We are working as part of a team of state agencies to make sure the young man gets all his needs met,'' she said. ``We are going to work to make sure he has a successful recovery and transition back into the community.''

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network
For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

Your generosity can save up to eight lives through organ donation and enhance another 50 through cornea and tissue donation

Tri-Staters headed to Transplant Games

2008-07-08T06:25:00.000-04:00

As the transplant games approach we continue to read stories about organ transplant recipients whose lives have been transformed to the point where they are able to compete in athletic competitions. I will continue to post these inspiring stories about what many recipients are doing with their "second chance" at life.

From the Herald-Dispatch In West Virginia:

By DAVID E. MALLOY
HUNTINGTON -- More than 19 years ago, Dell Rachell of Russell, Ky., was given 18 months to live.

"A virus attacked my digestive system," Rachell said Thursday. "I probably picked up something when I was on a USO show overseas. They said I wasn't a good candidate for a transplant. I had lost a lot of weight and had trouble breathing."

At the time she was living in Los Angeles and finally found a doctor to help her and she got on the donor list in 1991. But then her insurance company refused to cover her needed liver transplant. Her company president then got on the phone and threatened to pull his company's health insurance if they didn't cover the transplant. A few days later, the insurance company agreed to cover the cost of the operation at the UCLA Medical Center.

Rachell marks every March 16 as her "Life Day," bringing breakfast to employees at Pathways in Ashland to honor the day she was given a new lease on life.

The family of a 17-year-old teenage boy killed in a school shooting in Tuscon, Ariz., donated his liver to Rachell.

"I've been handed a miracle," she said. His dad said I was the only thing left of his son. They chose to donate life. It's the best thing you can do," Rachell said. "If you want to make your life count, pay it forward."

Next week, Rachell and six other Tri-State area residents will attend the Transplant Games in Pittsburgh where transplant recipients will compete in a number of sporting competitions to honor those who gave their organs to allow people like Rachell a second chance at life.

Rachell, 67, will participate in the 50-meter dash, two swimming events and a 5-K walk. "I'm leaving on Thursday," she said. "I want to be there for the opening ceremonies. I have events scheduled every day."

She is among four members of the Second Chance at Life group in Ashland who will be participating in the games.

Joy Bryant Harris, 59, of Huntington also will be heading to Pittsburgh next week to participate in the games.

"I want to do this just because I can," Harris said. "I want people to know there is life after a transplant. It gives us a good quality of life."

Bryant was suffering from an auto-immune disease several years ago when she ended up getting put on the liver transplant list in 2005. She was only on the list for 23 days when she got a new liver.

"A lot of people die while they're on the list," said Bryant, a member of Tri-State Transplant Support Group. "There are almost 100,000 people on the transplant list. About 18 of them die every day." The group meets at 7 p.m. the first Thursday of the month at the 4th Avenue Methodist Church in Huntington.

She plans to run in the 100-meter, 200-meter and 4-by-100-meter races in Pittsburgh. "They have the games every two years," she said. "It will be neat to meet so many other survivors. We're going there to honor our donors. Everyone should be a donor. Don't take your organs to heaven, heaven knows we need them here."

Max Stull, a retired civil engineer, and David Lockwood, a Huntington lawyer, also will be heading to Pittsburgh. They'll be playing tennis.

While Lockwood received a heart transplant at the University of Kentucky, Stull had a liver transplant at the University of Pittsburgh Medical Center. Stull's sister agreed to give him half of her liver for a transplant, but it didn't go well and he ended up getting another liver from an organ donor.

"I was out of it for eight days," said Stull. "Organ donation is a good thing. Without it, I wouldn't be here right now. Half the people on the transplant list don't make it. There is a critical need for donors."

Patricia Rice of Ashland already has her bags packed for the trip to Pittsburgh.

Along with her suitcase, Rice will be taking her bowling ball to Pittsburgh. "I love to bowl," she said. She and her husband, James, participated in the mixed bowling league at Blue Ribbon Lanes before she got sick.

Rice got a liver transplant at the University of Kentucky in December of 2004. The former Wal-Mart employee didn't have any health insurance, but was covered by her husband's insurance policy.

"I was on the transplant list for six months," she said. "This is not about me, it's about my donor. I have learned how important organ donation is. My whole family has signed up to be donors."

Since her operation, Rice has gotten to hold her two grandchildren. "I wouldn't have had that chance without the transplant," she said.

People can volunteer to be an organ donor by signing up when they renew their driver's license, Harris said. "You also need to inform your family of your wishes," she said.

For more info on this year's North American transplant games visit the following links: U.S. Transplant Games 2008 Pittsburgh July 11-16, 2008. Canadian Transplant Games Windsor, ON Aug 5-10, 2008.

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network
For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

Your generosity can save up to eight lives through organ donation and enhance another 50 through cornea and tissue donation

Woman who received new life ready to give back at organ transplant games

2008-07-07T11:08:00.002-04:00

From Greenville On Line in South Carolina:

One day, Melissa Layton wasn't feeling very well. The next, doctors told her she needed an organ transplant.

"They said a few more hours and it would have been too late," recalls Layton, who underwent two transplants after suffering a near-fatal condition known as volvulus where the small intestine twists and dies.

"I get tired easier than most people my age would," says the 29-year-old Taylors woman. "But it could be worse."

Indeed. This month Layton is participating in the U.S. Transplant Games, hosted by the National Kidney Foundation to raise awareness about transplantation.

Her events are singles and mixed doubles bowling, softball throw and 5K walk. No small feat for someone who had most of her abdominal organs replaced less than two years ago.

Layton, a fourth-grade teacher at Paris Elementary School, began having nausea and pain one day in 2005. It got so bad her husband of three months, Preston, took her to the hospital, where she was diagnosed with a kidney infection and sent home with medication.

Hours later, she was back in the hospital after collapsing at home. This time, she says, surgeons had to remove her small intestine to save her life.

"The whole small intestine was gone and an inch or two of large intestine," she says. "And I went into complete renal failure."

Layton was hospitalized for three months, then in March, traveled to Indiana to await a transplant. She got the call on May 18.

"It seemed like an eternity," she recalls. "But a lot of people wait a lot longer."

Worried that her own stomach would no longer work, surgeons gave Layton a new stomach and pancreas as well as small intestine.

But on June 6, her body rejected the intestine. And because she has a rare blood type, she thought she'd have a long wait for another transplant.

In just five days, though, she was back in the OR. This time, she was given the stomach, pancreas, small intestine and liver of a 15-year-old boy who'd died after an accident on a four-wheeler.

"My liver had gotten so bad from the constant (intravenous feeding)," she explains. "And they said they have more success if they do the liver too."

Five months later, Layton came home to Taylors. And last year, she returned to her school, which helped raise money for her medical bills. The first transplant, she says, pushed her over her $1 million lifetime coverage maximum.

Now on anti-rejection drugs, Layton is one of 31 transplant recipients and 22 donor family members from South Carolina traveling to Pittsburgh to participate in this year's games, says Mark Johnson, spokesman for LifePoint, Inc., South Carolina's organ procurement agency.

And each week, she and Preston, 32, an assistant manager for South Carolina Steel, take to the lanes to "train," she says with a chuckle.

"I'm not going with the intent of winning. I'm just going to have a good time and to celebrate life and to let the donor families see what kind of good they've done by giving up their family member's organs," she says. "They didn't have to do that."

Life isn't quite the same as it was before the illness and the transplants. But Layton says she feels pretty good most of the time.

"You've got to make the best of it," she says. "I consider myself very blessed."

For more info on this year's North American transplant games visit the following links: U.S. Transplant Games 2008 Pittsburgh July 11-16, 2008. Canadian Transplant Games Windsor, ON Aug 5-10, 2008.

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network
For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

Your generosity can save up to eight lives through organ donation and enhance another 50 through cornea and tissue donation