Cystic Fibrosis Patient Becomes Successful Model

A regular hospital visit, to receive treatment for her cystic fibrosis, catapulted Cassie Hawthorne, 22, into the modeling world.

Cassie agreed to have her picture taken for the Birmingham Children's Hospitals' annual book and the photographer who snapped her shots, recommended she visit his studio. Coincidentally, his studio was also above a modeling agency. The rest, as they say, is history.

Her successful modeling career and resume includes promotional work for Tesco and hair emporium Umberto Giannini on TV and in magazines. Cassie was also chosen to front this year's Cystic Fibrosis week, which begins May 14.

Cassie says, modeling gives her the opportunity to glam it up and allows her to forget, if just for a little while, that she has cystic fibrosis. She adds, having the illness gives her the drive to just do things because she never knows what later will bring.

With determination like that Cassie has a bright future ahead of her and is a true inspiration to all who have cystic fibrosis!

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One Living Reason to Donate Your Organs

By Eric Ernst

When she was 18 and undergoing a Navy physical, Bette Luksha-Gammell got the shock of her life.

"You'll never have children, and I'm surprised you're still walking," a doctor said. He later told her parents she probably wouldn't live past 20.

Unknown to her, Gammell had pulmonary hypertension, and her lungs and parts of her heart were three times normal size.

Following that news, a gradual decline left Gammell hooked to an oxygen tank for too much of her days.

Eighteen years ago, doctors transplanted two lungs into Gammell and sewed up a hole in her heart. In 2000, after her body rejected those organs, she received a single lung transplant. Then, about four years ago, she received a transplanted kidney after hers was damaged by the medicines she took for her lungs.

She now lives in North Port with her husband, Larry. On Sunday, she'll celebrate her 50th birthday.

Gammell may have lived a life of struggle and pain, but she doesn't ask, "Why me?"

"Never question God," she says. "You might not like the answer."

Instead of wallowing in self-pity, Gammell adjusted her goals and went to work for Disney cruise lines and as a baggage handler (no kidding) for Continental Airlines.

"I'm one of those people, I have to be doing something. I can't sit at home and collect a check every month," she says. "I'd love to be back at work, but I know the risk I take."

Gammell settles for teaching a wire jewelry class at the Cultural Center of Charlotte County.

She's also an advocate and ambassador for organ transplants. At Disney, she started a support group called Second Chance. She records her daily struggles at www.survivinganorgantransplant.blogspot.com. She writes letters with suggestions for Medicare reform.

And she has traveled across the country to talk with potential recipients filled with doubts, fears and conflicting emotions.

At 9 p.m. Sundays, she watches a new CBS television series, "Three Rivers," which follows the lives of organ donors, recipients and surgeons at a fictitious hospital in Pittsburgh.

Gammell calls the show the first national platform for organ donations.

"It certainly starts a conversation, " says Jennifer Krause, public affairs manager for LifeLink Foundation.

The foundation, which arranges organ donations from Tampa Bay through Fort Myers, reported 584 transplants in its coverage area last year. Another 437 donors provided tissue for such uses as bone grafts and heart valves.

Gammell sees donors as the real heroes. "I try to do something, each day, to honor donor families," she says. "At the most grief-filled time of their lives, they gave up someone they loved to give life to someone that someone else loves."

To recipients and donors, she offers, by her own example, a simple creed: "You have all these issues, but you have to stay positive. Being positive keeps you alive, whether you've had a transplant or you're healthy."

To become an organ donor, register online at www.donatelife.net.

Eric Ernst's column runs Wednesdays, Fridays and Sundays. Contact him at eric.ernst@heraldtribune.com -or- (941) 486-3073.

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First and Longest Living Transplant Survivor

...An inspiration to other cystic fibrosis patients

By Pamela Fayerman, VANCOUVER SUN
October 21, 2009

Colleen Kohse is believed to be the longest living cystic fibrosis patient/survivor of a double heart/lung transplant. She went to England in 1989 for that and is celebrating two decades of good health. She is here with her Louisiana Catahoula Leopard dog named Bandit.
Photograph by: Ian Smith, Vancouver Sun

VANCOUVER -- Exactly 21 years ago, Vancouver resident Colleen Kohse became the first Canadian with cystic fibrosis to have a double lung and heart transplant. Today, she is the longest-living CF transplant survivor in the country.

But apart from that, she's an inspiration to hundreds of patients in B.C. with the hereditary disease, who face drastically shortened life expectancies (37 is the median) unless they get a lung transplant when their own organs have been ravaged by repeated infections. Last year, there were only enough donors for a handful of CF patients to get transplants.

Kohse was just 29 when she went to England, where she and her Langley friend and fellow CF patient Brandy Reich were on a waiting list for transplants at one of the few hospitals in the world where such operations were pioneered.

At a time when all her friends were getting married, starting families and careers, she was told she had only months to live without a transplant. "Here I was, winding down my life like an 80-year old person trying to get their affairs in order. It's a horrible feeling when everyone is starting life and I was finishing mine," she said at the time.

That's when she decided to put all her faith in a British surgeon who had, at that time, done the procedure perhaps 30 times before: cardiothoracic surgeon Dr. Magdi Yacoub, who was knighted by the Queen in 1992.

Though Kohse's heart was healthy, Yacoub removed it during the six-hour operation and replaced it with one from a young British man who had died in a car accident. Heart transplants are no longer part of the procedure for CF patients but two decades ago, the whole harness of lungs and heart was transplanted in the belief it would result in a higher success rate, Kohse said.

Her heart was given to a man from Greece who lived another 17 years after his transplant.

Kohse, who lost a sister and a brother to CF, admits she was gripped with fear, but she took solace in the fact that if she was to die after her transplants, she'd be happy knowing that her last act was saving another life. In an interview at the time, her dad, Fred, told The Vancouver Sun: "She thinks it's quite amusing that she got a British heart and lungs transplanted by an Egyptian-(born) surgeon and gave her Canadian heart to a Greek man."

During her hospital stay, she got a congratulatory call from then prime minister Brian Mulroney and his wife, Mila, a great advocate for CF patients, she recalled Wednesday.

In the decades since her transplant, Kohse has lost count of the many CF friends she has lost, including Reich, who died soon after her own transplant at the same hospital.

"Fifty is considered old age for CF. Transplantation isn't a cure for CF; it's an end-stage treatment. It gives us not just a longer life, but a new life," Kohse said in an interview.

Her health today is very good, an amazing feat consistently noted by her doctors.

"I take about 30 pills a day, including immunosuppressants that all transplant patients have to take for the rest of their life, and then some enzymes to improve the digestive issues that CF patients have. My lungs are still fine," she said.

Joyce Taylor, manager of the Lower Mainland chapter of the Canadian Cystic Fibrosis Foundation, said Kohse is one of about 30 B.C. CF patients still living after a transplant. About a year after Kohse got her B.C. government-paid transplants in Britain, Vancouver General Hospital opened its transplant unit so B.C. residents wouldn't have to leave the country. Some patients still must go to Toronto because of shorter waiting lists and facilities that handle higher risk or more unusual procedures.

There are currently 10 CF patients waiting for transplants, and many look to Kohse for hope.

"We're very proud of Colleen Kohse," Taylor said. "Her survival success and quality of life helped many people with CF make the very difficult decision to start the assessment process.

"In the last few years, we've had a number of people die within a few years of post transplant. This has made the decision once again very difficult as patients look to Colleen and her success and then consider all those who weren't successful. Unfortunately, for many there's no choice and they have to hope theirs will be a success story."

Kohse and other CF patients will be part of the annual Canadian Cystic Fibrosis Foundation gala Nov. 7th at the Pan Pacific Hotel. Money raised will support research. For tickets and information, call 604-436-1158 or go to: www.65roses. ca.

pfayerman@vancouver sun.com

© Copyright (c) The Vancouver Sun

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Taking Flight -Inspirational Stories of Lung Transplantation

Lungs for Life has had a long standing relationship with Joanne Schum. When she first compiled "Taking Flight" we were thrilled for her and we received first grabs at the new copies before they hit the store. From that point forward we have always kept this book in stock and available to the cystic fibrosis and lung transplant communities. It is a valuable resource for those considering or going through lung transplantation. Learn more about the book below.

Taking Flight -Inspirational Stories of Lung Transplantation
This book is the gathering of 255 stories from around the world of those who have had a lung or heart/lung transplant. The recipients share their amazing stories. Also included are stories from caretakers and loved ones and how lung transplant changed the lives of their loved ones, and how wonderful it is to witness the new life that has taken place.

The fascinating and miraculous stories of all these individuals are just a small number of those who have received a lung transplant and now have the joy of living and breathing and being with their loved ones for many more years. Inspirational, moving and a true miracle for all these folks.

Compiled by Joanne Schum (Cystic Fibrosis Bi-Lateral Lung Recipient, September 12, 1997). Authored by Lung Recipients Around the World.

Released: July 6, 2006 | ISBN-10: 1553696840
Purchase Taking Flight: Inspirational Stories of Lung Transplantation through Amazon.

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The Butterfly: A Symbol of Lung Transplant

I love butterflies and how appropriate the butterfly has also become the symbol of lung transplant. If you have cystic fibrosis, at some point your doctor will discuss with you the need for a lung transplant. It is my hope the following story behind the symbol of newly transplanted lungs will provide you with hope and inspiration as you begin your transplant journey.

The Butterfly: Life has wings...or rather life should have wings. When Cystic Fibrosis damages the lungs with scarring from past infections, and antibiotics no longer give the relief they once did, and the quality of life is stalled, or the length of life is shortened when you are told, "you have only a couple of years left", you want those wings back to fly. Lung Transplantation is the option to get those wings once again and live your life dreams.

For those who are fortunate enough to witness the actual lung transplantation surgery, they will describe it as a moving experience that is emotional and awe inspiring. When the old lungs are removed, appearing much like raw liver, and the new lungs are taken from the cooler they have been transported in, the light pink, white new lungs are in such contrast to the old. But the more breath taking experience is to see the new lungs take life when they are connected. It is described as "like beautiful butterfly wings, opening for the very first time, they expand and you can see the beauty in life and in good lungs".




Like butterfly wings opening for the first time, so is the size and shape of the new lungs...a comparison that has great meaning to those with Cystic Fibrosis who get the gift of new lungs and a chance to live their dreams.

As you consider and journey through transplant, read inspiring stories of transplant survivors. Taking Flight -Inspirational Stories of Lung Transplantation is available through Amazon.

Interested in submitting your personal transplant journey for consideration on our website or blog? I'd love to hear from you! Just contact us for details.

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