Man walks across country to help heart transplant recipients

By Jed Boal ksl.com

SALT LAKE CITY -- After losing his wife to a failed heart transplant a decade ago, one man is staying true to his vows by helping other heart transplant patients get a second chance.

Mike Tittinger has one mission: to walk across the country to raise money for a scholarship fund to support heart transplant patients. And on his long walks, Tittinger discovers several things, one step at a time.

"It's almost meditative," Tittinger said. "You just focus on the positive."

Tittinger is now taking a long walk back to his wife's final resting place.

"Once this idea came along, it was like, ‘yeah, that's what I need to do.' " Tittinger said. "I needed to give back."

Deanna Tittinger was diagnosed with cardiomyopathy at 10 years old, but defied expectations and lived into her late 20s. But unfortunately, Deanna did not survive a heart transplant to extend her life.

"This whole journey I don't look at as a memorial, but as a celebration of second chances," Mike Tittinger said. "I want to remember. So, I'm actually walking back to where I came from -- where I left ten years ago."

Tittinger is now happily remarried and works in the newspaper industry. But, he said, he was ready to shake things up a little bit.

"I guess it's a second chance for me in a way," he said. "I'm kind of reinventing my life and where I was at. I wasn't really happy with the road I was on."

Tittinger now walks to help others. The pace is slow, but Tittinger said crossing the country at three miles per hour pales in comparison to a transplant patient's epic road to recovery.

"It's long. It's day in, day out," he said. "You can't even think about the long term. You've just got to keep fighting every day and struggle -- stay in the moment. You can't get overwhelmed by three months from now."

The money he raises from walking is dedicated to a scholarship fund to help heart transplant recipients and their families as they rebuild their lives and rekindle their dreams put on hold.

"It's really just a matter of staying positive and focusing on positive thoughts," Tittinger said.

Now five weeks and more than 500 miles into his cross country exodus, Tittinger plans to travel from fisherman's Wharf in San Francisco to Ocean City, New Jersey. He expects to make it to the Atlantic Ocean by Thanksgiving and expects to wear through about six pairs of shoes throughout his journey.

To learn more about Mike's scholarship fund, visit www.mikeywalks.com.

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Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You

British woman has new lease on life after lung transplant

By Pat Jones yellowad.co.uk

IT IS hard to believe vivacious Clare Hemmington was sometimes too weak to leave her bedroom three years ago. 

A rare chronic lung condition left her needing a wheelchair and stair lift to get around the house – and her parents having to help her look after her baby daughter while her husband was at work. 

Clare, who lives in Hutton, Brentwood, was a victim of Lymphangioleiomyomatosis (LAM) - a rare disorder that affects women only, and destroys lung tissue, gradually causing lung function to deteriorate. 

The only real cure was a lung transplant – and Clare, who has first been diagnosed in 2005, finally had the life changing operation in February 2009, after 10 false calls. And what a difference that has made. 

“You wouldn’t recognize me now,” she said. “I live a normal life, visiting friends, walking round shops, going on holiday and looking after my husband and daughter.” 

Clare’s experience had made her determined to help other sufferers and a wholehearted supporter of LAM Action which funds research into the disease. 

“We have lots of fundraising events. The latest is the coast to coast walk from the Irish to the North Sea. We hope many people will support that venture,” she said. 

“Paul Roylance from Hockley is taking part so it has an Essex interest.” 

Clare first noticed symptoms of the condition –breathlessness- when she was 37. 

She became pregnant and put off having tests until after Lucy was born, but she continued to get worse until she was put on oxygen 24 hours a day, as eating and sleeping or difficult and showering and dressing took ages. 

Eventually the transplant became essential. 

The fundraising walk starts on August 13 and is expected to take a week. Anyone can support it with a donation by visiting
www.justgiving.com/walking-Coast-to-Coast-in-7-days

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Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You

40 New Hospitals Have Joined SynCardia's Certification Program to Implant Total Artificial Heart During Past Year

TUCSON, AZ--(Marketwire - Jul 28, 2011) - SynCardia Systems, Inc. (www.syncardia.com), the privately-held manufacturer of the SynCardia temporary Total Artificial Heart, announced today that it has nearly tripled its first-half sales from 2010, posting its first quarterly and first-half profit in company history.

"There are only two companies making money in the mechanical circulatory support industry right now," said Michael Garippa, SynCardia CEO/President. "SynCardia and Thoratec. The Total Artificial Heart continues to become the standard of care for end-stage biventricular heart failure. In the past few weeks, half a dozen world-renowned transplant programs have completed SynCardia Certification and performed their first implants of the Total Artificial Heart. These centers have achieved excellent patient outcomes thus far, especially considering how sick these patients were prior to implant."

During the past year, 40 hospitals have enrolled in SynCardia's Certification Program to implant the Total Artificial Heart. SynCardia is currently conducting an FDA-approved Investigational Device Exemption (IDE) clinical study of the Freedom® driver, the first U.S. portable driver designed to power SynCardia's Total Artificial Heart both inside and outside the hospital. A total of 22 patients have been enrolled so far in the study. Of these patients, 19 have reached study end points of heart transplantation or 90 days of support on the Freedom driver. Twelve have been discharged, which is 40% of the 30 required by the FDA.

The Freedom driver, which is also CE approved for use in Europe, has supported a total of 50 patients worldwide. The most recent patient was transferred to the Freedom driver on July 21, at the Heart & Diabetes Center NRW in Bad Oeynhausen, Germany.

CAUTION - The Freedom® driver is an investigational device, limited by United States law to investigational use.

About the SynCardia temporary Total Artificial HeartSynCardia Systems, Inc. (Tucson, AZ) is the privately-held manufacturer of the world's first and only FDA, Health Canada and CE approved Total Artificial Heart. Originally used as a permanent replacement heart, the Total is currently approved as a bridge to transplant for people dying from end-stage biventricular heart failure. More than 900 implants account for more than 210 patient years of life.

Similar to a heart transplant, SynCardia's Total Artificial Heart replaces both failing heart ventricles and the four heart valves. It is the only device that eliminates the symptoms and source of end-stage biventricular failure. The Total Artificial Heart provides immediate, safe blood flow of up to 9.5 liters per minute through both ventricles. This high volume of safe blood flow helps speed the recovery of vital organs, helping make the patient a better transplant candidate.

In March 2011, Fast Company magazine ranked SynCardia #20 among the World's 50 Most Innovative Companies "for giving mobility to artificial heart recipients." Also in March, the longest running health and wellness series on public television, "Healthy Body, Healthy Mind," produced a 30-minute program featuring SynCardia's Total Artificial Heart. View here

For additional information, please visit: http://www.syncardia.com
or follow SynCardia on Twitter - @SynCardia_News

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Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You

FDA Panel Gives Okay to Pediatric Use of LVAD

By Joyce Frieden, News Editor, MedPage Today Published: July 26, 2011

An FDA advisory committee has recommended in favor of a humanitarian exemption for Berlin Heart's EXCOR ventricular assist device for use in children as a bridge to heart transplant. Panel members voted unanimously, 16-0, that the device is safe for use in patients who meet eligibility criteria, and also voted unanimously that the device's benefits outweigh its risks. The device is intended for use by pediatric patients with severe isolated left ventricular or biventricular dysfunction who are candidates for cardiac transplant and who require circulatory support. The panel compared survival on the device with treatment with extracorporeal membrane oxygenation (ECMO). The FDA briefing documents discussed results of a study of 48 children awaiting heart transplants; the children were divided into two cohorts depending on their age. In the first cohort, which included children ages 30 days to 4 years, 87.5% of the children put on EXCOR according to the study protocol survived to transplant or successful weaning, compared with 75% of those receiving ECMO (HR [unadjusted for matching] was 0.043,P=0.004). In the second cohort, which included children ages 4 to 16, 91.7% of those on the EXCOR device survived to transplant or weaning, compared with 66.7% of those on ECMO (HR [unadjusted for matching] 0.02, P=0.004). In making its decision, the panel pointed to observational data showing that patients could remain on the EXCOR device for longer periods of time compared to ECMO, according to a summary of the meeting provided by the FDA. The panel also was persuaded by the fact that the EXCOR patients experienced fewer adverse events than the ECMO patients, according to the summary. There was concern expressed, however, that the EXCOR patients experienced a higher percentage of acute strokes and adverse neurological outcomes compared with the ECMO patients, and the panel recommended that a post-approval study of that aspect of the results be conducted. The panel also recommended that pediatric patients receiving the EXCOR device be enrolled in registries that would collect data for about five years on stroke, pump thrombus, and longer-term neurologic and quality of life outcomes. American Heart Association spokesperson Mariell Jessup, MD, who is a professor of medicine at the University of Pennsylvania Heart and Vascular Center hailed the advisory panel's action and said that if the FDA follows the recommendations of the advisory committee it would provide "ventricular assist devices manufactured to fit the smallest of children with end-stage heart failure-allowing their physicians to sustain their fragile lives while donor hearts can be found. This is a strategy that has been available for years for adult and larger children, and now can be offered for a wider group of young patients." The American College of Cardiology also expressed its support for the EXCOR device. "While the literature documents potential risks to the implantation of ventricular assist devices in the pediatric population, it also indicates that ventricular assist device implantation offers the opportunity to extend the time limits of therapy beyond ECMO and maximal medical therapy as children wait for a new heart to become available," David R. Holmes Jr., MD, president of the ACC, wrote in a letter to FDA Commissioner Margaret Hamburg, MD. "Adult VADs are simply not appropriate for the pediatric population, and there are no other devices that can be used as a substitute. We hope the FDA will encourage Berlin Heart and other device manufacturers to develop additional pediatric cardiology devices that appropriately treat the needs of this special population." The FDA does not have to follow the advice of its advisory committees, but often does.

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Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You

From an airborne plea, a friendship balloons

180 miles apart, girls become pen pals. Children strengthened by discovery they are both dealing with pain.

By Helena Oliviero
 

The Atlanta Journal-Constitution

The red balloons bumped against each other before fanning out in the blue sky. Each carried a yellow note containing a fervent request:

“I am 9 years old and I am having my second heart surgery on April 21, 2011. Please send me a prayer if you find this.”

Bita Honarvar, bhonarvar@ajc.comSara-beth is examined by hepatologist Dr. Rene Romero at Children’s Healthcare of Atlanta at Egleston as her brother Michael waits. Both children have had liver transplants

Some balloons fizzled and fell to earth, others soon vanished. Sara-beth Martin of Cochran wondered: Would any of her balloons reach New York?

We’ll never really know. But one traveled farther — into the heart of a girl who faced troubles of her own.

Eight-year-old Reanna Roberts was sitting on a swing at her grandfather’s house in Vance, S.C., about 60 miles south of Columbia, when she spotted something red in a nearby bush. A balloon? It was limp after soaring 180 miles from central Georgia.

And it had a note.

“My name is Sara-beth Martin,” it began. The note ended with the address of Children’s Healthcare of Atlanta at Egleston, where Sara-beth was awaiting surgery.

Thus began a friendship based on hope, built on optimism. Two little girls were about to discover they had more in common than living in small Southern towns. Both had faced adversity, both knew pain.

Each also discovered her new friend was resilient and strong, determined to treasure what life brings.

And in this case, it arrived in a red balloon.

“Of all of the places, and of all of the people out there, Reanna was the only person who found one of the balloons,” said Sara-beth’s mom, Becky Martin. “I believe everything happens for a reason. Maybe it was to help them both deal with the coping process. I consider this such a blessing.”

Reanna responds

Reanna grabbed crayons and a sheet of paper and drew a picture of herself and Sara-beth.

Reanna lost her mother when she was just 4 years old. At 34, her mom quickly succumbed to cervical cancer.

But when Reanna sat down to write her first letter to Sara-beth, she made no mention of her loss; instead her thoughts and prayers were for Sara-beth.

Please get well soon. ... I hope your hert sergery[sic] goes well. And I am 8 and I herd you were nine. And I found the red balloon with a letter attached that talks about you. And my name is Reanna Roberts. And I pray you get well soon. P.S. I want to be your friend.

Reanna’s father mailed the letter later that day.

At Sara-beth’s send-off party less than a week before her surgery, family and friends donned red T-shirts saying, “I wear red for Sara-beth.”

On the day of the surgery, Sara-beth’s family learned about another young person rooting for the girl in the operating room: Reanna’s letter arrived.

Sara-beth’s second surgery is the latest chapter in a long journey of medical woes.

Born with Alagille Syndrome, a rare genetic disorder affecting the liver and other parts of the body, she underwent a liver transplant when she was 3 years old.

Last year, Sara-beth was having difficulty breathing, requiring emergency heart surgery to repair her mitral valve, which controls the way blood flows through the heart’s chambers.

A few months later, Sara-beth’s labored breathing returned, making it clear she required a second surgery, this time to replace her mitral valve, which wasn’t opening and closing properly.

Waking up following surgery and still groggy from the anesthesia, Sara-beth was given Reanna’s card. She smiled but didn’t say much. The next day, she asked to see the card again.

“I liked it so much,” said Sara-beth. “I thought it was sweet, and it was neat to see the card. ”

Sara-beth wasn’t surprised one of her balloons was discovered so many miles from her hometown.

“My mom was joking it might not fly past the pavilion at the party, but I just had this feeling some would probably travel very far away,” she said.

Once Sara-beth was home from the hospital, she called Reanna. The two girls got to know each other better. Sara-beth talked about how she loves karate and softball.

Reanna talked about her affinity for drawing pictures and singing.

They described their respective small towns. Sara-beth explained that her town had one stoplight. Reanna’s has none.

They talked about how much they loved the water. And they asked their parents for a play date.

The girls meet

In June, the families met at Hilton Head. Sara-beth’s family had a trip already planned; Reanna and her father drove over for the day.

The two girls spent much of their time together in a pool, jumping and splashing and talking.

Reanna said she felt a special connection; it was hard to explain.

Then she added, “I know what it feels like to be sad.”

Reanna told Sara-beth about her mom, an aspiring country singer who died too young. Reanna told her new friend that she loves to sing, too, and hopes to someday be a singer just like her mom.

Reanna said she only has a couple of friends and one is her cousin. Now, she says, she has one more.

“We are friends,” said Reanna, who stands about a head taller than the diminutive Sara-beth. “I could see that she’s just like me in a way. She’s kind of little, but she’s rough and tough like me.”

At a recent check up at Children’s, Sara-beth, wearing an orange bow in her hair, carried a binder containing dozens of homemade cards from friends and classmates . It holds the card from Reanna in the front pocket.

Since the surgery, Sara-beth’s energy has soared. Her appetite improved and she gained 8 pounds. She passed her test for her yellow belt in karate. She will soon go to an overnight summer camp. And she can’t wait to join her classmates as a fourth-grader this fall at Bleckley County Elementary School.

Also at the recent checkup, Dr. Rene Romero, medical director of the liver transplant program at Children’s Healthcare of Atlanta, marveled at how Sara-beth went from frail to highly energetic in just a matter of months. The heart surgery was successful, he said. Sara-beth’s health challenges will require lifelong medical attention, but he’s optimistic she will continue to thrive and do well.

Meanwhile, Reanna continues to spend many afternoons in her grandfather’s yard, inventing songs in her head. On a recent afternoon, she sang a song about a caterpillar and a butterfly.

“Butterfly fly and butterfly fly if you want to, butterfly fly away. ...”

She sings about a butterfly leaving her side, and she hopes for more surprises to fly into her life.

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Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You

Waiting hard part for many needing organs

BY ANNE GEGGIS, STAFF WRITER news-journalonline.com

EDGEWATER -- Kayla Crouser is 24 and she needs a kidney.

A genetic flaw caused polycystic kidney disease and turned the former New Smyrna Beach High School student, who once played every sport she could, into a young adult who can barely get out of bed on some days. Going to dialysis is just about all she can accomplish -- a three-hour procedure repeated three times a week.

"I'm just stuck right here, not going anywhere," she said.

She is one of 470 patients on a waiting list for a kidney transplant at Florida Hospital Orlando, where Florida Hospital sends its patients in Volusia and Flagler counties for transplants. Halifax Health Medical Center, which operates the only transplant center in Volusia and Flagler counties, has 45 people on the waiting list for its kidney transplant program.

Crouser's mother, Donna Nichols, has been ruled out as a donor. But just watching her daughter's strength fade since she was diagnosed in 2006 is more than she can take.

Nichols raised $5,000 for her daughter's transplant and is now asking the community for something money can't buy.

They are looking for someone with O-type blood willing to be tested to see if his or her kidney would make a match with Crouser's body. Nichols has written letters to newspapers, posted a plea on Facebook and started a blog in the effort.

"I want to give her a life again, but I can't," said Nichols, 49, shaking her head as tears rolled down her face.

About 89,350 Americans are on waiting lists for the same fist-sized organ that filters waste from the bloodstream, according to the Organ Procurement and Transplantation Network. For them, a new life could be just one phone call away, but that call might never come.

An estimated 18 people a day die waiting for an organ transplant -- 12 of those are waiting for a kidney, according to the U.S. Department of Health & Human Services.

In that regard, though, patients in Florida are more fortunate, according to the Scientific Registry of Transplant Recipients. Patients at the majority of New York transplant centers have a median wait of more than six years for a kidney transplant, the most common type of transplant. In comparison, Florida's kidney transplant centers have wait times less than 24 months and only Shands Jacksonville and the Mayo Clinic in Jacksonville have median waits longer than 24 months.

Mike Mulrooney, Halifax's transplant coordinator, said Florida's elderly population means more donated organs are available. If someone dies in this area who is an organ donor, the organ is tissue typed and matched against people on the waiting lists at transplants centers from Indian River County to Jacksonville.

If no match is found, lists statewide are checked, and then in regional states, continuing on until a match is found, perhaps going across the country.

But locals get dibs first.

Begun in 1973, Florida Hospital Orlando has watched its kidney transplant caseload skyrocket from 20 per year in the late 1980s to 177 transplants last year. The services have expanded to include pancreas and liver transplants. And the hospital hopes to add heart transplants in a few months once it finds a heart transplant surgeon.

Florida Hospital could not say how many of the 470 patients on its waiting list for kidney transplants in Orlando are from Volusia and Flagler counties.

"As more people came to this area, that increased the percentage of the population who were experiencing renal failure and were in need of a transplant," said Leigh Ann Burgess, administrative director of the Florida Hospital Transplant Center in Orlando, on the growth of that hospital's program.

By contrast, Halifax Health's program is in its infancy. Twenty-seven transplants have been performed there since its kidney surgeon, Dr. Rod Mateo, came on board nearly two years ago.

The majority of organs have come from cadavers. Halifax has a high success rate in getting usable organs from cadavers to offer to transplant candidates, which helps explain why wait times are shorter here than elsewhere in the country, Mulrooney said.

"Eighty-three percent of our donor opportunities occur," Mulrooney said of Halifax's success rate in getting usable organs.

Still, the wait can be agonizing. This month marks two years since Wayne Madigan, 56, of Holly Hill got on the kidney transplant list at Halifax. He said he's itching to do more than just get through dialysis treatments, which leave him too drained to do much else.

"This is driving me crazy," he said, of sitting around. He said he'd love to put his 30 years working on machine equipment to use again.

High blood pressure landed him in kidney failure after a heart attack in 2006. Now, dialysis is keeping him alive, but the waste that it fails to remove during the filtration process builds up. As a result, his skin is thin and full of blisters and bruises.

He said he sleeps with a cell phone at his side. If the caller ID lights up with the word "Halifax" on it, his pulse starts racing, he said. So far, though, he's only had a call to be the back-up recipient -- an opportunity that he decided to pass on because of the donor's previous history of cancer.

Sometimes, he said, he looks around at the dialysis room and feels a twinge.

"It's really hard watching people die," he said. "First they come in using walkers, then wheelchairs and they don't come again."

Over in Edgewater, Crouser said she's tired of being a frequent visitor in the emergency room at Bert Fish Medical Center in New Smyrna Beach. She's had numerous problems with blood infections that have required hospitalization and intravenous antibiotics.

"I want to be able to get a job, go to work, take a walk," she said.

Her mom, looking on, just shook her head, "It's the little things that we take for granted that she can't do -- it's unbelievable."

Anyone with O-type blood who might be interested in giving a kidney to Kayla Crouser can call her mother, Donna Nichols, at 386-409-0910 or email dcrouser@hotmail.com.

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Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You

CF patient one of the longest-survivors of double-lung transplant

Surviving A Double-Lung Transplant: 'Life Is Good'

By NPR staff NPR Morning Edition

As a child, Howell Graham was diagnosed with cystic fibrosis, a genetic disease that often impairs lung function. By his late 20s, Howell would lose his breath doing things as routine as brushing his teeth.

So he underwent a risky operation — in 1990, he had a double lung transplant. And today, Howell, 49, is one of the longest-surviving recipients of that surgery. Recently, Howell and his mother, Nan, talked about a few moments when it seemed like he might not make it.

"I remember waking up from the surgery being on the vent [a ventilator], and seeing this absolutely beautiful brunette nurse," Howell says. "She held my hand her entire shift."

As he recovered, Howell drifted in and out of consciousness. And the next time he woke up, the hospital shifts had changed.

Then, he recalls, "a male nurse came in — this big burly dude," as his mother laughs. "And I was not happy at all."

Howell could not yet speak, as the ventilator helped him breathe. But he had a pen and paper.

"I just was writing notes like, 'Get him the heck out of here,' and 'I don't want this guy. Get me the girl back,'" he says.

"Lots of cursing," Nan remembers. "Lots of cursing."

"Lots of cursing," Howell agrees. "And my dad was tearing up the notes, because he was scared the male nurse would find the notes and kill me. So he spent his time intercepting my hate notes."

"Which is kind of understandable," Nan says.

After a month, Howell was able to leave the hospital.

"And when you got home, things were going well," Nan says.

"Well, things were going fantastic," Howell says.

His recovery was going so well that Howell took his father's 17-foot boat out — "thinking I knew what I was doing," he says.

"I ended up jumping out of the boat. And the boat got away from me, and it's too far to swim. And I really thought I was going to drown."

"Six months out of a double lung transplant," his mother says.

Howell says he was worried — but not just about possibly drowning.

"The first thing that popped in my mind was Dr. Egan, who's kind of a little fireball," he says, "how mad he was going to be that he had given me this transplant — and I blew it just being stupid."

"You said, 'He would have killed me!'" Nan remembers. "And I said, 'He would have had to get in line.' Your father and I would have been the first in line to kill you for this. We worked 28 years; he worked 12 hours."

"Yeah," Howell says.

After his surgery, Howell overcame a ruptured appendix; he is also a colon cancer survivor.

And more than 20 years after receiving his transplant, Howell says, "These are my lungs. And it's pretty amazing to have made it that far out. I've just been a lucky person."

"Life is good," Nan says.

"Life is good," Howell agrees.

Listen to the audio produced for Morning Edition by Nadia Reiman.

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Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You

Toxic Air Linked to Long-Term Damage for Deployed Troops

By LARA SALAH ABC News

Scott Weakley, 47, of Denver already had three deployments under his belt when he was sent on back-to-back missions in Pakistan, Afghanistan and Iraq that started in 2004.

Weakley, a marathon runner, was in peak shape, and said he was physically charged for the work ahead. But within five years, Weakley transformed from the lead runner in his battalion to a patient who may now need a lung transplant.

Weakley was diagnosed with constrictive bronchiolitis, a relatively rare irreversible lung condition marked by inflammation and scarring in the airways.

While serving overseas, Weakley inhaled thick plumes of smoke from open pits that regularly burned material and human waste, debris and chemicals. Weakley said burn pits were a constant presence near the U.S. Embassy in Pakistan, and some bases and outposts in Iraq and Afghanistan.

"I knew at the time that smelling it could not be good for me," said Weakley. "I just remember trying to cover with my BDU [battle dress uniform] shirt."

While serving in Iraq, Weakley was also exposed to fierce dust storms, which may also have contributed to his condition, his doctors told him.

Like Weakley, a growing number of soldiers who have served early on in the wars of Iraq and Afghanistan have now been diagnosed with deployment-related lung disease that comes from inhaling toxic waste from sources like dust storms, combat smoke and burn pits.

While the U.S. Department of Defense reports that it has shut down all burn pits in Iraq -– replacing some with closed incinerators -- and plans to do the same in Afghanistan by the end of the year, new evidence suggests the health effects may be irreparable for soldiers who were already exposed.

A new report by researchers at Vanderbilt University found that nearly half of 80 soldiers in Fort Campbell, Ky., who could not pass a standard 2-mile run because of breathing problems, were diagnosed with constrictive bronchiolitis. More than 80 percent of those with constrictive bronchiolitis had been exposed to dust storms, and more than 60 percent had been exposed to burn pits, according to the report, which was published Wednesday in the New England Journal of Medicine.

"I don't' think that we can say that our data says these exposures are the cause, at least not yet," said Miller. "But I think it is very concerning."

Standard tests that are used to detect respiratory diseases, such as a pulmonary function test or CT scan, could not pick up the soldiers' condition. Only a lung biopsy could detect constrictive bronchiolitis in the soldiers, Miller said.

"A large number of soldiers who have these respiratory disorders are being missed," said Miller, who suggested that more soldiers may have a form of respiratory condition and not know it.

While a pulmonary function test picked up Weakley's condition, Miller said that many doctors won't test further if standard tests fail to find anything.

"It's unusual for someone to take people normal on the tests and still give them a biopsy, but it's the only way these guys would've gotten the compensation that they needed," said Miller, who recently served on an American Thoracic Society speaker's panel with Weakley.
Although Weakley felt short of breath, he chalked it up to exhaustion from long hours and little sleep.

"I was trying to decipher the reality and the psychological," said Weakley.

But, he said, serious respiratory cases might be easier to detect if soldiers had a record of their breathing capacity beforehand.

"Everybody that is deployed should get a pulmonary function test before deploying, said Miller. "If we have baseline breathing test on everybody we were seeing, then that would limit the amount of biopsies."

Weakley said his wife was the first to notice that something was wrong. Weakley recalled calling her within a week of his first exposure to the burn pits in Pakistan.

"She wondered why I was having a tough time talking," said Weakley, who was not one of the cases reported by the Vanderbilt researchers. "She recognized something was wrong over the phone."

Although Weakley felt short of breath, he chalked it up to exhaustion from long hours and little sleep.

"I was trying to decipher the reality and the psychological," said Weakley.

At the time, Weakly said, doctors told him he may have asthma, a common diagnosis among many soldiers deployed to Iraq and Afghanistan.

"When I got home [in July 2005], my wife from the get-go said I don't care who you see, something is wrong," he said. "It didn't hit me until I got home."

Post-deployment lung diseases like Weakley's sometimes mirror less serious respiratory infections, because it's unclear what's causing the condition, said Miller.

"There's pigment in the lung area, but we don't know exactly what that chemical or exposure is yet," he said.

Miller said he is now working with Weakley's pulmonologist at National Jewish Health in Denver, Dr. Cecile Rose, who will examine the biopsies to find the exact chemical that is causing the condition among soldiers.

Weakley, who could once run two miles in less than 13 minutes, found that he had to stop and catch his breath. In 2008, after five deployments in more than 20 years of service, Weakley received a medical discharge from the Army.

Now Weakley said he struggles to keep up with his 8-year-old and 11-year-old children.

"Before I left, I could do anything and everything," said Weakley. "I never thought I would have to brush the idea of a lung transplant."

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Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You

Infant dying as parents refuse care

english.eastday.com
THE nine-month-old infant He Shunzhi moans in bed as his hand falls down on his belly, which has grown to the size of his head due to a bacteria infection that causes him pain every time he takes a breath.

The baby is dying in the Shanghai Children's Medical Center before he can learn to speak, with his limited remaining days supported by long tubes, oxygen and medicines, doctors said yesterday.

He has been suffering from congenital biliary atresia since he was born, a disease not common among newborn infants but totally curable after a series of operations. But his parents, both farmers from Sichuan Province, quickly gave up on their baby.

During the past three months, He's parents have removed him from hospitals three times despite objections from doctors, turned down advice on liver transplant surgery that was given a 90-percent plus chance of success to cure the disease, and refused all donations to cover the cost of the transplant.

"Just donate the money to other poor needy children," said the father surnamed He. 

The baby was finally sent back to the hospital last Thursday after people had seen the mother holding the baby outside the hospital in the hot sun on July 9, waiting for his death. They reported to police that the mother, surnamed Zuo, was "attempting murder." 

The family said they are giving up on the baby because they fear the 10 percent failure rate of the operation. They also said the father wouldn't donate part of his liver to his son in fear of losing his physical ability to farm or damaging his own health.

"It's totally unbelievable," said an official surnamed Xia with the hospital. "We have the chance to cure the disease via the liver transplant in April and the father has been proved to be the perfect candidate for the surgery, but he refused to sign on the papers and left." 

She said volunteers had even promised to cover the 100,000 yuan (US$15,487) to 150,000 yuan cost of the transplant and reassured the parents that money wouldn't be a problem. But the father insisted on no treatment.

In the following three months, the baby's condition deteriorated day by day until he suffered severe bacteria infection that prevented the doctors from carrying out the transplant, meaning he was past the point of no return. To make matters worse, the parents and baby were living on the streets, kicked out of their apartment by a landlord who irrationally feared the baby's disease might spread to other residents.

The tragedy of the baby sparked heated discussion among local residents over whether parents have the right to make life-or-death decisions for their children.

Many volunteers who have offered money and help to save the infant accused the parents of murdering the baby. "If he died, he wouldn't die of the disease, but died under his parents' hands," said a 39-year-old mother surnamed Zhou. 

Others argued that volunteers had no right to get involved in the family's business.

According to local lawyers, the father's refusal to donate his liver to his son didn't violate the country's Juvenile Protection Law.

"The law requires parents to send their children to the hospital for medical treatments if the disease is curable and they are capable of paying the expenses, but it doesn't force parents to donate their organs," said lawyer Wang Zhan.

Wang said the father didn't violate the law, since he had spent all of his money on the medical treatment, although people may blame him for his moral selfishness and ignorance.

However, Wang said the case reveals a loophole in the medical and legal systems, because the Juvenile Protection Law protects parents who refuse to make the decision to save their children, and it protects government facilities and hospitals that can legally look away and do nothing to alter the decision.

Zuo, the baby's mother, told Shanghai Daily yesterday that her husband had changed his mind and was now willing to offer part of his liver to the boy if the bacteria infections could be cured. But the doctors said it's too late.

“You Have the Power to Donate Life – Sign-up today!
Tell Your Loved Ones of Your Decision”

Canada Ontario,
Canada - British Columbia, other Canadian provinces

United States, organdonor.gov

United Kingdom, register at NHS Organ Donor Register

Australia, register at Australian Organ Donor Register

Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You