Friday, October 29, 2010

A Bluegrass Emergency

The following article is from the Cary Citizen.

After recovering from having a heart pump implanted this past spring, musician Jan Johansson was added back onto the heart transplant waiting list in July. His friends have organized a fundraiser to help him and his wife, Theresa, defray his medical expenses. PineCone helped with a benefit held at Sertoma Amphitheatre this past June. That event raised about $4,000.

On November 7 there will be another benefit concert to raise funds for the Johanssons at Cary’s Sertoma Amphitheater.

Among the musicians and bands confirmed for this latest benefit concert is David Tate, a banjo player who is also Johansson’s cardiologist at UNC-Chapel Hill. Tate plays with the band Fescue 911, which has been “on-call for bluegrass emergencies” since 1993.

And what could be a more fitting emergency than a bluegrass musician in need of a heart transplant?

To read the full article, click here.

Friday, October 22, 2010

Man To Run NYC Marathon After Double-Lung Transplant

From CBSNewYork.com:

A Connecticut man is running his first marathon next month. That might not sound unusual except for the fact that last fall he couldn’t walk across a room.

One year ago, Tim Sweeney could barely walk without wearing an oxygen mask. One year ago, both Tim and his wife, Beth, believed his days were numbered, reports CBS 2′s Dana Tyler.

“I always knew there was something different when I grew up. I always had a slight cough in the morning, but as the day went on, it became less and less,” Tim said.

For years, he had no idea that he’d been diagnosed with cystic fibrosis when he was 2 years old. Cystic fibrosis is a genetic disorder in which the body produces a thick mucous that clogs the lungs and hampers digestion.

Tim never missed a day of school, though. His mother gave him the proper medications; his father pushed him to be athletic. They didn’t label him.

“He was so young. We didn’t want to stop him from doing anything, to be as normal as possible, to play with his brothers and do what everybody else did, so we didn’t tell him when he was young,” Tim’s mother, Rose Sweeney, said.

Tim was always athletic. He finished college and worked as a fitness trainer. When he and Beth started dating, she heard something in his chest, and insisted he see a doctor.

“They asked, ‘how long have you known you had cystic fibrosis,’ and I was 26, 27, and I was like, ‘whoa,’” Tim said. “To me, it was a bombshell. Now, all of a sudden, it was real. I looked it up, life expectancy was 37 or something. It was a major shock.”

That was in 2004. Tim said he felt fine and always thought he could beat it, but in 2007 – soon after the couple married – his health began to decline.

They were able to have a baby through in vitro fertilization, but doctors told the new father he had 18 months to live if he didn’t undergo a lung transplant.

Tim recalled the agonizing wait for a donor.

“There’s someone out there leading a normal life. Typically it’s an accident victim, so it’s sudden,” Tim said. “It’s such a tragic and beautiful thing all at once. You know it’s going to happen.”

When his normal treatments failed last fall, Tim was unable to breathe on his own. With double pneumonia, Sweeney was quickly moved to the top of the list for a rare double lung transplant.

“I was 120 pounds, I was so weak, eyes sunken in, losing hair,” Tim said.

After three false alarms, Dr. Joshua Sonnett transplanted the lungs of a 25-year-old accident victim last Nov. 10, saving Tim Sweeney’s life.

“Medically, he was at a point, he was around 20 percent of where he should be. He lost 80 percent of his lung function,” Dr. Sonnett said. “Once you get in the 20 percent range, basically in a window, if he got an infection he could have died.”

Only 100 double lung transplants are performed in the United States each year. Tim woke up in intensive care wondering how the transplant went, when Dr. Sonnett shocked him with a question.

“He said, ‘I understand you’re a trainer. I just did the NYC marathon,’ and I thought that would have been great, especially with new lungs,” Tim said. “He said, ‘Why don’t we do that?’”

“He said, ‘I’ll run it with you next year.’ I didn’t expect him to do it,” Dr. Sonnett said. “[But] I knew he could, I knew he could.”

Dr. Sonnett said Tim’s lifelong commitment to a good diet and exercise – even walking the hospital corridors with weights – ensured his speedy recovery. He was released from the hospital in a week, and there’s still been no infection and no rejection.

“He woke up every night, for every night for two years, having coughing fits,” Beth said. “[Now] there was no coughing, no heavy breathing, no oxygen sound. I’m lying there, dead silent – we just started laughing.”

And now, there’s no stopping him. Beth designed T-shirts to raise money for medical costs and cystic fibrosis, and be his coach.

“I try to get him to lengthen his stride and lean forward a bit,” Beth said. “I run behind him on these things so he doesn’t get an injury that day.”

The little boy with the cough now has wings on his heels, and he doesn’t run alone. He’s grateful to his doctors, the donor and his family.

“It felt like something…I was doing something I was born to do,” Tim said. “This is what came natural to me, to go outside and go running.”

Tim Sweeney’s first marathon will be on Nov. 7, and even though it’s Dr. Sonnett’s fourth, he said it’ll be tough keeping up with Tim and his new lungs.

Tim and Beth hope his story inspires others waiting for organ transplants – that they know that yes, it’s a long and often dire road, but there are heroes all around us sharing the gift of life.


Thursday, October 21, 2010

Groundbreaking Stem Cell Transplant Surgery Done at Emory

From Fox5 Atlanta:

ATLANTA, Ga. - A groundbreaking surgery took place Wednesday, Oct. 20 at Emory University Hospital as a 58-year-old Hoschton man, who was diagnosed with the neuro-degenerative disease ALS, had a stem cell transplant.

John Conley is only the seventh ALS patient in the country, and the first who is still able to walk. To undergo the high-risk experimental surgery, Conley says he was a bit nervous, but he was ready for the very delicate operation.

Neurosurgeons at Emory actually opened up Conley’s spinal cord, and then they delivered five injections—each containing 50,000 fetal stem cells along the bottom of his spinal cord.

The procedure has never been done before, so no one knows if it’s safe. But, Conley and his wife, Sandy, say he volunteered for the trial knowing there are no guarantees.

Conley’s surgery wrapped up on Wednesday afternoon.

FOX 5’s Beth Galvin was in the operating room during the groundbreaking surgery. She’ll have an update on Conley’s progress on the FOX 5 News at 5 on Monday, October 25.


Tuesday, October 19, 2010

Bingo Fundraiser a Big Hit!

Volunteers for NFT patient Richard Calm held a successful bingo fundraiser last month. For $20, attendees played bingo and had a hot dog lunch with chips and a drink! Gift baskets were also given away in a raffle, and baked goods were available for a donation. The event raised nearly $2,000 in honor of Richard!

If you'd like to plan a bingo fundraiser for your campaign but need a few ideas or tips, feel free to contact us at info@transplants.org.

Richard's grandson Thomas with his great-grandmother.


The gift basket table.



Friday, October 8, 2010

October Patient of the Month: Vicki Lauer

In 2004, Vicki was in an accident that caused an inhalation injury. She awoke in the ICU after being in a coma for two days, and she was diagnosed with end-stage lung disease. Her disease has worsened over the years, and doctors say a double-lung transplant is essential to her survival. While she awaits her lifesaving transplant, she depends on an oxygen tank 24 hours a day.

Her illness has caused many challenges for Vicki, emotionally, physically and personally. However, she is grateful for the lessons she has learned, and she looks forward to receiving a second chance at life. Vicki says if she is blessed with her transplant, she will spend more time paying attention to the truly important things in life and encourage others to do the same.

A double-lung transplant costs approximately $650,000. And that's only the beginning. Before the hospital will add her to the transplant waiting list, she must raise $40,000.

Although she loves her work as a clothing designer, she is currently unable to work because cutting and draping the fabrics is too physically taxing, adding to her financial strain. Because she lives more than 175 miles from the transplant center in New Orleans, she must temporarily relocate to be near the hospital during recovery, incurring significant expenses for travel, food and lodging.

To learn more or to donate to NFT to assist Vicki with her transplant-related expenses, visit her web bio of the NFT website.

Wednesday, October 6, 2010

Florida Musician Awaits Kidney Transplant

NFT patient Kenny Cox needs a lifesaving kidney transplant. His son will donate one of his kidneys to save his father's life. Below is a video Kenny's fundraising volunteers have created on his behalf, featuring a song written and performed by Kenny.


Tuesday, October 5, 2010

Let NFT Tell Your Story!

Are you an NFT transplant patient whose friend has been by your side throughout every health challenge you've faced? Has a friend offered to be your donor match or done something else incredibly generous for you?

A national health magazine is looking for powerful stories about friendships, and NFT's marketing department would love to hear from YOU. The deadline for us to pitch the story is Tuesday, October 6 at 7 p.m. EST, so act quickly!

If you have a story we can share on your behalf, please contact us at info@transplants.org.

Living Kidney Donation Webinar

KidneyLink is hosting “Learning About Living Kidney Donation,” a webinar hosted by Harvey Mysel of the Living Kidney Donors Network on Tuesday, October 12 at 8 p.m. (ET). The webinar will teach people how to raise awareness about living kidney donation and how to tell others about their need for a kidney transplant.

Medical professionals say the only way to increase kidney transplants is to increase the number of kidneys available. Living kidney donation is a key way to help this occur. Many people, however, don’t know a lot about living kidney donations or are afraid to ask someone for a kidney.

To learn more about the upcoming webinar or to register to attend, visit the KidneyLink website.

Monday, October 4, 2010

Paired Kidney Exchange Links Donors and Recipients

The following article is from the Reporter, Vanderbilt University Medical Center's weekly newspaper.

Amy Ragsdale and Brenda Copeland have a lot in common.

Both suffered from polycystic kidney disease, an inherited kidney disorder. Both relied on dialysis for survival, needed kidney transplants and had several folks willing to donate. But neither of them had a compatible match among their donor pool.

Luckily the pair had another thing in common--Vanderbilt University Medical Center.

Coordinators with the Vanderbilt Transplant Center recognized that both patients had exactly what the other patient needed--donors that were blood-type compatible.

Ragsdale, who is B positive, had a pool of potential donors that had A-blood typing while Copeland's donor pool was populated with B-blood types. She needed A's.

“Thankfully, Vanderbilt noticed that there was another family on the waiting list who had the exact opposite scenario as me,” said Ragsdale. “They ran a cross-match and found that we were compatible with the other's donor. We are just so fortunate to have such incredible donors.”

On Sept. 16, both women were successfully transplanted, through a paired kidney exchange.

Murfreesboro resident Ragsdale, 29, had hoped to receive a kidney from her sister-in-law Courtney Mobley, while Alabama resident Copeland, 64, was to receive longtime friend Terry Green's kidney.

But instead, donors and recipients were swapped. And in the end, everyone accomplished what they set out to do.

“This was the easiest type of swap,” said David Shaffer, M.D., professor of Surgery. “Logistically, it is easier if we can find a swap within our own center. That way patients don't have to travel, nor do we have to ship organs to another center. Everyone is in one place.

“Although swaps are challenging, they are a way to increase living donor transplants,” said Shaffer, surgical director of the kidney/pancreas transplant program. “We will be able to improve patient outcomes and reduce the need for patients to be placed on long waiting lists for a deceased donor transplant. This gives patients the best possible kidney in the shortest possible time.”

This is Copeland's second transplant. First diagnosed with kidney disease at age 27, she received her first kidney in 2005. She has been on dialysis for two months awaiting another transplant.

“Anyone who has been on dialysis knows your quality of life is not good,” said Copeland. “It's just a way to exist. This transplant, although not a cure for my disease, will give me my life back.

“I've been so sick that I spend most of my time in the house. I am so looking forward to getting out more. This is a perfect time to start a walking program, don't you think?”

Ragsdale, who had both kidneys removed over the summer, has lived with polycystic kidney disease since she was 12. She said she can barely remember what feeling healthy is like.

“It has been such a struggle and battle for me,” said Ragsdale. “There are just so many things I am looking forward to. The doctor said I will feel better than I have felt since I was a teenager. For the rest of my foreseeable future I will have a sense of normalcy.”

Donor coordinator for living donor transplants, Verna Johnson, R.N., is pleased the transplants went well.

“There are so many obstacles that can arise when finding compatible organs,” said Johnson. “It's not as simple as finding matching blood types. There's a lot more testing that goes on. But it really all comes down to patience and time to find those perfect donors.”

All patients were discharged and will continue to be followed on an outpatient basis.