Breathe Blog

Butterfly Notecards Benefit the Lungs for Life Foundation

2011-05-11T10:03:00.003-04:00

My dear friend and artisan, Barb, over at Bronson Hill Arts has designed a lovely set of handmade butterfly notecards and grouped them into a collection called the Flights of Life Collection.

There are four different butterfly designs in the collection set. Aside from the obvious (how beautiful they are!), Barb has graciously offered to donate a portion of the proceeds from the sale of each set to the Lungs for Life Foundation.

These cards have such a variety of uses from a simple handwritten note to a friend to a, birthday card, get well card (perfect for someone recouping in the hospital), 'just because' card or really any occasion. Your purchase will not only support artisan handmade goods, it will also support the mission of the Lungs for Life Foundation.

To order your collection set, simply visit Barb's blog and click on the "ordering" page.

A special THANK YOU to Barb for joining in the support of our mission and for joining our growing list of Targeted Giving Business Partners.

To learn more about becoming one of our TGB Partners, simply visit the Lungs for Life Foundation website.

Cystic Fibrosis Patient Becomes Successful Model

2011-05-09T16:44:00.001-04:00

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!

Cystic Fibrosis Explained by Oli and Nush

2011-03-14T12:35:00.004-04:00

I came across this short film, made for the Cystic Fibrosis Trust (www.cftrust.org.uk) by Absolutely Cuckoo. It's a fantastic video that helps children with cystic fibrosis understand their condition and explains to other (non-affected) children what Cystic Fibrosis is.

I remember, as a child, struggling to understand what cystic fibrosis was when I was old enough to understand that my oldest brother, Eddie, was diagnosed with CF. I only wish there was this short film that I could have watched.

Thanks for sharing the video, Joanne!

The Marilyn D. Roman Memorial Fund

2011-03-07T11:00:00.003-05:00

It is with gratitude and appreciation that we accept contributions being made in memory of Marilyn D. Roman (Illinois). Before Marilyn's passing (February 28, 2011) she designated the Lungs for Life Foundation to receive contributions in her memory and in lieu of flowers.

We learned Mrs. Roman's nephew, Todd, has cystic fibrosis (CF) and had a successful transplant (TX) in St. Louis -he is now 30 years old. This personal connection to both CF and transplant is why she desired for memorial contributions to be made to the Lungs for Life Foundation.

The Marilyn D. Roman Memorial Fund has been set up to receive contributions that will allow the Lungs for Life Foundation to assist cystic fibrosis individuals and families with both pre- and post- transplant expense needs.

All donations received under this fund will be acknowledged to the Roman Family.
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Obituary Notice:
Marilyn D. Roman, neeGoldstein, beloved wife of Richard L.; loving mother of Daniel (Marcie) Roman and Lisa (Peter) Buss; cherished grandmother of Jake, Max, Nick, Abby, and Ben; sister of Michael (Marge) Goldstein; sister-in-law of Barbara (Alvin) Silvian; adored niece, aunt, grandaunt, cousin, and friend. Private graveside service. In lieu of flowers, contributions may be made to Lungs for Life Foundation, 135 Battle Green Drive, Rochester, NY 14624.

Published in Chicago Tribune on March 1, 2011
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Our deepest condolences to the Roman family at this difficult time.

Did you know Mrs. Marilyn D. Roman? We'd love to hear your fond memories of her. Simply leave a comment to share your thoughts.

New Targeted Giving Business Partner: Word Décor 'n More

2011-01-05T08:00:00.000-05:00

Happy New Year!!!

It has been a great start to 2011! With the help of Crystal Allure Jewelry, I'm excited to announce Andrea with Word Décor 'n More has generously offered to donate a portion of the net proceeds from the sale of the Just Breathe wall quote to the Lungs For Life Foundation!

It's a perfect collaboration for both businesses and a special thank you to Andrea for her generosity and support of the Lungs for Life Foundation mission.

How You Can Help
The easiest way to help is simply to spread the word. Tell your friends, family, social network contacts and don't forget to pick one up for yourself!

Here are just a few ideas on using the Just Breathe vinyl wall decal:
-Give as a gift
-Give as a lung transplant anniversary gift
-Adorn your own wall and raise awareness of organ donation and transplant to all your visitors.

Have any more ideas on how to use the Just Breathe wall quote? Please feel free to comment and share your idea(s).

Choose your preferred size and colors over at the Word Décor 'n More website.

Live every moment to its fullest!

Just Breathe...
You'll never live this moment again

Transplant Gatherings -Rochester, New York

2011-01-03T10:36:00.001-05:00

Joanne Schum is a member of TAO - Rochester (Transplant Awareness Organization) and she sent me an email that I wanted to share with you. TAO meets regularly for "lung transplant" gatherings and they would like to pull together "organ specific" gatherings. You do not have to be a member of TAO or attend TAO meetings, to be part of the gatherings. The gatherings will be for socializing, sharing, questions and answers, resources, stories, support and FUN!

Below are the DATES, TIME and PLACE for January, February and March 2011. Please contact Joanne Schum directly at the address listed at the end of the post for more details on the gatherings.
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MIKE'S NEW YORK DINER
3423 Winton Place (S. Winton Road Area, and Brighton Henrietta Town Line Road area)
Rochester, New York

1. Tuesday, January 11th - NOON
(The first meeting will be an introductions, planning, ideas, and getting some topics to discuss. We will also like to name our group.)

2. Monday, February 7th - NOON

3. Monday, March 14th - NOON

We will also discuss other possible locations, or day of the week for future gatherings. Mike's is centrally located and easy to get to from all directions.

REMINDER: Invite anyone else you know who is interested in lungs, the pre and post issues, and your family, friends, whomever would like to attend.

I will have everyone RSVP me, if they plan on going, the day before the meeting. For seating purposes.

I hope you all will consider attending a meeting sometime, should be fun. Please email for more details or to sign up.

Joanne Schum
Email: twoluckylungs [at] juno [dot] com

New Organ Transplant Awareness Bracelet

2010-07-28T09:04:00.005-04:00

It's been awhile since a new design has been rolled out but it's finally here and there are many more to come. This newest design features a lovely centered Swarovski Crystal flanked by sterling silver awareness ribbon blocks with a fully beaded bracelet of sterling silver, Swarovski Crystals, pearls and silver twisted floating rings.

And what transplant bracelet is complete without our signature butterfly charm and jewelry tag.

There is only 1 availabe of this designs so don't miss out. Hurry on over to Crystal Allure and snag it before it's gone!

Unusual Gifts That Make You Think Twice

2010-06-28T08:00:00.000-04:00

I happened across this 'gift' while doing a google search and just had to share. I think we would all agree, most gifts are meant to be enjoyed. But what about the gifts that are meant to get you to think twice? Such as this lung shaped ashtray.

So tell me, would it make you think twice?

Photo Source: Tree Hugger

Build-A-Lung

2010-06-25T15:31:00.002-04:00

Really?! Yea, I'm with you on that.

It sounds like something out of a science fiction movie, but in fact, it is true. I recently read about Yale University researchers who had regenerated the lung of a rat. Did it work? Apparently the lung "lived" for an hour or two. There is still much research to do on this discovery, especially for humans. But, it was stated it could take 20 to 25 years before such a leap for humans is in place, or accepted.

According to the American Lung Association, nearly 400,000 people die of lung diseases each year in the United States alone and lung transplants are far too rare to offer much help.

So what do you think about a human build-a-lung?

And P.S.: Thank you to the rat for dedicating him/herself to science, even if it wasn't his/her choice. :-)

Submit Your Transplant Story

2010-06-24T15:48:00.003-04:00

Joanne Schum is compiling the 2nd edition of "Taking Flight: Inspirational Stories of Lung Transplantation" and is in need of stories.

If you know anyone who had a lung transplant, were/are care takers of lung recipients, or were/are a donor family who donated lungs, have them email Joanne at [luckylungsforjo AT aol DOT com].

An added bonus: If you enter a story you have the opportunity to design the front cover!! Butterflies are the theme.

To learn more about the details of submitting your story, check out the Facebook Group page Lung Transplantation: Taking Flight with New Life. Those who have HAD, or are WAITING for a lung, lungs, or heart/lungs transplant, will find this group helpful.

Joanne Schum is 46 years old. A post double lung transplant of 13 years due to Cystic Fibrosis.

'Presumed Consent' for Organ Donation

2010-06-21T13:18:00.005-04:00

Westchester County assemblyman, Richard Brodsky (D-Greenburgh), whose daughter is a two-time kidney transplant recipient wants to flip New York's organ-donation system on its head by presuming people are donors unless they indicate otherwise. The reason: he feels "New York is a completely failed system".

Statistics show:
-The majority of New Yorkers would like to be donors, yet just 13% of residents 18 and older are on the state Donate Life Registry
-More than 9,600 people in the state need organ transplants (New York Organ Donor Network)
-There were just 423 deceased organ donors in New York in 2009

But because both individuals and religious groups have raised legitimate concerns on this subject, he will not be pushing the proposal this session. However, he co-sponsored legislation that would let people consent to giving an anatomical gift through an electronic signature. It has passed both houses and now goes to Gov. David Paterson for his consideration. Right now, 45 states allow electronic signatures for donor registries (New York Organ Donor Network).

Other organ donation reforms he is working on includes requiring the state Department of Motor Vehicles to provide information on organ donations and creating an organ donation tax credit.

In an April Donate Life America report, data showed other states with low donor-registration rates are Texas (an estimated 2 percent), South Carolina (9 percent) and New Hampshire (10 percent), compared to 73 percent in Alaska.

No states have "presumed consent" laws, although there have been attempts in several of them, including Maryland and Pennsylvania. Legislation is under consideration in Illinois. A bill was introduced in the Delaware Legislature two years ago. And a number of European nations, including France, Austria and Spain, have this kind of system in place, and they have seen an increase in organ availability.

It is felt by some that since the majority of New Yorkers and Americans want to donation organs and tissues when they die, the burden should be on the minority to opt out.

The Long Island Coalition for Life Inc. opposes Brodsky's legislation. "This legislation opens up the door to abuse via hastened death of vulnerable people and overriding of family concerns," Jerome Higgins, chairman of the coalition, wrote in a memorandum to lawmakers. "It also goes a step further toward turning human organs into commodities. The sick and disabled need to be protected, not exploited for their body parts."

Mary Ann Baily, a fellow of the Hastings Center, a bioethics research group in Garrison, Putnam County, who once sat on an Institute of Medicine committee that looked at how to boost organ donations, stated that even if all available organs were taken, it wouldn't eliminate waiting lists. Hospitals may not get the maximum number of organs possible if they and organ banks aren't well organized, she said.

Cara Matthews
Gannett Albany Bureau

So what do think about presumed consent? Leave a comment below, we'd love to hear your thoughts!

Struggling to Breath with Pulmonary Fibrosis

2010-06-15T12:13:00.002-04:00

A video I happened across and wanted to share with you. I'm sure there are "pre-commercials" before the actual video starts.

Visit msnbc.com for breaking news, world news, and news about the economy

Linking Donors To Save Lives

2010-06-10T09:28:00.003-04:00

Today I caught notice of a local newspaper article about donors linking together to save lives. Intriqued, I read the article and was quite amazed. It was about a local man who needed a kidney transplant and his sister was more than willing to donate her kidney but she turned out to not be a good match. So, they entered into this kidney chain.

This pay-it-forward kidney donation chain works to match living donors with those in need of a kidney transplant. Rising rates of diabetes, hypertension, obesity and longer lives has resulted in more kidney disease, making it the most-needed organ for transplant.Photo Source: United Network for Organ Sharing
Theorectically, these chains could go on forever, but typically include a half-dozen pairs. Some chains end when the last willing donor has type AB blood. Participating in a donor chain provides many more chances...as long as you have a healthy friend/family member willing to share their kidney.

The national waiting list, in 2009, showed 16,831 kidneys were transplanted nationwide, 62 percent from deceased donors and 38 percent from living donors. Living donors must pass alot of tests but their kidneys transplant better than cadaveric kidneys.

What about the living donor? Live donors can live fine with just one kidney. If illness or injury does hurt a living donor's remaining kidney, they then move to the top of the list of people needing a kidney tranplant (a guideline set by the United Network for Organ Sharing). The surgery is minimally invasive with tiny incisions made in the lower abdomen wall, resulting in a much less needed hospital stay.

For more information:
United Network for Organ Sharing
www.transplantliving.org/livingdonation

Alliance for Paired Donation
www.paireddonation.org

National Kidney Registry
www.kidneyregistry.org

Transplant Awareness Bracelets -Get Your Discount

2010-04-27T08:21:00.004-04:00

What?! A discount on designer awareness jewelry? Get outta town. That's right. The exclusive awareness jewelry designs offered by Crystal Allure are included in their recent grand re-opening announcement and offer.

That means until April 30, 2010, you can get 20% off your transplant bracelet order! AND for every order you place until then, your name will be entered into a contest to win a FREE $50 gift certificate to spend at CrystalAllure.com!!!

Let's run this down:
1. 20% off your order
2. a chance to win a $50 gift certificate -and-
3. a portion of the proceeds from awareness jewelry sales are donated to charity

Is it me -or is this a fabulous deal?! Now's your chance to get your favorite awareness bracelet (transplant awareness bracelet, cystic fibrosis awareness bracelet) before it's gone. Remember some pieces are one-of-a-kind and cannot be duplicated. Help raise awareness of transplant, organ donation and cystic fibrosis with sparkling jewelry by Crystal Allure!

Petition to Enable Treatment of Cystic Fibrosis in Japan

2010-01-29T10:27:00.003-05:00

Anabel Stenzel, from the Power of Two, sent me this very important information about the need for action on a petition to enable treatment of CF in Japan.

Currently in Japan, CF is not included in the medical expense assistance program for incurable diseases.

And, the basic medications which are used in Europe and the United States of America, such as pancreatic enzymes for digestion, inhaled antibiotic medication, and inhaled mucolytic enzymes are not approved in Japan or covered by the national health insurance.

Every adult and child with cystic fibrosis deserves to be able to take advantage of the medications and treatments available for cystic fibsosis. These important factors help to extend their lives and allow them to live a quality life.

Please show your support: http://www.PetitionOnline.com/cf2010/

Cystic Fibrosis Lampwork Awareness Bracelet

2010-01-28T10:03:00.004-05:00

Now available at Crystal Allure Designs is a beautiful cystic fibrosis awareness beaded bracelet designed with artisan lampwork purple ribbon awareness glass beads, accented with Swarovski Austrian Crystals, and a mix of both goldfill and sterling silver metals.

Purple is the awareness support color for cystic fibrosis, which is often referred to as 'sixty five roses' by young children.

Don't forget to check out the matching cystic fibrosis awareness earrings for a complete awareness jewelry set!

Remember, each purchase helps support the mission of the Lungs for Life Foundation.

Potential organ donors should be sure to register

2009-11-06T08:00:00.001-05:00

Monday, October 25, 2009 -Friday's front page Tri-City Herald story should have had a disclaimer on it that warned readers to keep a box of tissues nearby.

Herald reporter Annette Cary wrote a piece about one local girl that now will live because another died tragically.

Alex Hatley-Flores and Taylor Tefft, two middle school cousins from Richland, both died from injuries in a collision on Interstate 182.

Kayla Jackson, a Pasco teen in need of a double lung transplant, was likely one of nine organ recipients from these two young donors.

Kayla has been on the transplant list for eight months. Her lung capacity was down to 10 percent and had been told that without a transplant, she would only live a few more months.

It is an awful and wonderful, grief- and hope-filled story.

Our hearts go out to the parents of all of these girls.

There are some interesting statistics about organ donation. According to Donate Life Today:

* More than 100,000 men, women and children currently need life-saving organ transplants.

* Every 11 minutes another name is added to the national organ transplant waiting list.

* An average of 18 people die each day from the lack of available organs for transplant.

And here's a statistic that is easy to change. Although 90 percent of Americans say they support organ donation, only 30 percent know the essential steps to become a donor.

It's easy to register as a donor in Washington. If it's something you are interested in, you should indicate your wishes on your driver's license or state ID.

Out of courtesy to your loved ones, you should also let your loved ones know of your wishes.

Washington does not require family consent for donation, but filling out a family notification card will help avoid and confusion or delays. This form can be printed from www.donatelifetoday .com.

From this same site you can also register to become a donor, update (or remove) your profile or register your child as a donor.

What many would-be donors may not understand is that everyone can be a potential donor, regardless of age, race or medical history, and there is no cost to the donor's family.

They may also be concerned that if they sign up for organ donation, their own life becomes less valuable. Thankfully that's just not the case.

Even if you are a donor, when you are in an accident or become seriously ill, the first priority will always be to save your life.

Each life is precious. Timothy Woodall, Alex's stepfather captured this sentiment beautifully when he said, "(God) takes one under his wings and saves another."

Becoming an organ donor is a personal decision, but those who favor the idea should take the necessary steps to register. You never know when your chance to save a life will come.

Source: http://www.tri-cityherald.com/962/story/767366.html

Dr. Egan Receives $1.47 Million Grant For Lung Transplant Research

2009-11-04T15:13:00.001-05:00

Wednesday, October 14, 2009 — The National Heart, Lung, and Blood Institute has awarded Thomas M. Egan, a professor of surgery at the University of North Carolina, a $1.47 million, two-year grant for research on perfusion and ventilation of lungs outside the body before transplant. The research could lead to a significant increase in the number of lungs available for transplant.

Thomas M. Egan, M.D., M.Sc.
Dr. Egan, a surgeon in the UNC Division of Cardiothoracic Surgery, is internationally known for his research on lung transplantation, which has been under way since he came to UNC in 1989 to start its lung transplant program.

His new grant was awarded under the NHLBI's Translational Research Implementation Program, a two-stage program designed to translate fundamental research ideas into proof-of-concept efficacy testing in patients. This Stage 1 grant is supported by the American Recovery & Reinvestment Act's Grand Opportunities (GO) grants program, for large-scale research projects that the National Institutes of Health says have "a high likelihood of enabling growth and investment in biomedical research and development, public health, and health care delivery." NHLBI is part of the National Institutes of Health.

Dr. Egan's project will perfect a technique to perfuse and ventilate human lungs outside the body (ex vivo) to determine if they are suitable for transplant, and will demonstrate safety of transplanting human lungs after ex-vivo perfusion in a pilot clinical study.

Lung disease is the fourth leading cause of death among Americans. Lung transplantation helps patients with end-stage lung diseases and improves survival, but transplants are critically limited by an inadequate supply of suitable lungs from conventional organ donors – people who have been declared brain-dead after a lethal brain injury and have been on ventilation before a controlled cardiac arrest when organs are retrieved for transplant. Lungs that have been offered for donation frequently cannot be used because lung function in the donor is poor, due to inflammation or infection or fluid build-up (edema) that occur after trauma and emergency treatment.

During transplant, the stopping and restarting of circulation to the lungs can cause ischemia-reperfusio n injury, which damages cells in the lung and leads to problems with lung function after transplant.

Only about 1,400 lung transplant procedures are performed each year in the United States; since 1995, 6,022 people have died while on the waiting list for lung transplants. This week, 1,867 people were on the national waiting list for lung transplants, according to the Organ Procurement and Transplantation Network, part of the U.S. Department of Health and Human Services.

Dr. Egan has designed an ex-vivo perfusion and ventilation circuit in which lungs are placed for evaluation and possible treatment before transplant. Ex-vivo perfusion and ventilation allow for lung function assessment, and also for possible treatment of lungs to reduce ischemia-reperfusio n injury in transplant. Thus, the lungs treated this way could have less graft dysfunction or failure and the transplant recipient could have an improved chance of survival. This would revolutionize lung transplantation, and could have a major impact on other types of organ transplants.

Michael Knowles, M.D., of the UNC Division of Pulmonary and Critical Care Medicine, a collaborator on Dr. Egan's project, called the research project "groundbreaking. "

"I have been involved in lung transplantation from its inception at UNC, and have seen, first-hand, the suffering and unnecessary death that results from the shortage of lung donors in the U.S.," Dr. Knowles said in a letter of support for the research.

The project has support of lung transplant physicians at several other universities as well as from Carolina Donor Services, the organ procurement organization serving most of North Carolina.

For the Stage 1 project, Dr. Egan's research team will use lungs from conventional organ donors that have been declined for transplant because of concerns about lung function, as well as lungs from DCD (donation after cardiac death) donors, patients who are not brain dead but whose next-of-kin have decided to withdraw life support because their condition is so poor. The lungs will be assessed in the ex-vivo perfusion and ventilation circuit.

In a Stage 2 study, Dr. Egan's project will also plan a large multi-center clinical trial to use the ex-vivo lung perfusion/ventilati on system to evaluate human lungs retrieved after death from non-heart-beating donors, patients who have died of sudden cardiac arrest outside the hospital or in the emergency room. Using animal models, Dr. Egan was the first scientist to show that lungs could be retrieved from non-heart-beating donors after death and safely transplanted. His research has shown that lungs are viable for substantial periods of time after circulation stops, because lung cells do not rely on perfusion (circulation of blood or other fluids) for cellular respiration.

Widespread use of lungs retrieved from non-heart-beating donors followed by ex-vivo assessment could provide much larger numbers of human lungs for transplant that may function better and last longer than lungs currently being transplanted from conventional brain-dead organ donors.

Investigators for his project, entitled "Ex-vivo perfusion and ventilation of lungs to assess transplant suitability, " are:

Thomas M. Egan, M.D., M.Sc., Professor, Division of Cardiothoracic Surgery, UNC Department of Surgery (Principal Investigator) , UNC School of Medicine
Peadar G. Noone, M.D., Associate Professor, Division of Pulmonary and Critical Care Medicine, UNC Department of Medicine, UNC School of Medicine
Paul Stewart, Ph.D., Research Associate Professor, Department of Biostatistics, UNC Gillings School of Global Public Health
Eileen Burker, Ph.D., CRC, Associate Professor, Division of Rehabilitation Counseling and Psychology, Department of Allied Health Sciences, and Adjunct Associate Professor, Department of Psychiatry, UNC School of Medicine
Benjamin E. Haithcock, M.D., Assistant Professor, Division of Cardiothoracic Surgery, UNC Department of Surgery, UNC School of Medicine
William K. Funkhouser, M.D., Ph.D., Professor, Department of Pathology and Lab Medicine, UNC School of Medicine
Katherine Birchard, M.D., Assistant Professor, Department of Radiology, UNC School of Medicine
R. Duane Davis, M.D., Ph.D., Professor, Division of Cardiothoracic Surgery, Department of Surgery, Duke University School of Medicine
For more information, contact Dr. Egan at (919) 966-3383.

One Living Reason to Donate Your Organs

2009-11-02T11:00:00.000-05:00

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.

H1N1 Advisory for Heart/Lung Transplants

2009-10-31T11:00:00.000-04:00

In light of the daily media attention and alerts to the spreading flu, it makes sense to provide some information relevant to the transplant community.

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NEW YORK, Oct. 26 (UPI) -- There are additional challenges for cardiopulmonary transplant recipients and donors if they catch H1N1 flu, U.S. researchers say.

Physicians representing the International Society for Heart & Lung Transplantation Infectious Disease Council issued an advisory for all programs in cardiothoracic transplantation that aggressive diagnosis and early treatment need be paired with active preventative measures to stem the impact of infection in the transplant population.

Since transplant recipients are treated with anti-rejection drugs, the advisory provides clear directions for specific dosing of anti-viral drugs and management of the background immunosuppression. Specific guidelines for evaluation and management of post-surgical transplant patients are also given, as well as recommendations for how and when to administer vaccines.

On the donor side, the advisory provides guidelines for how to evaluate and treat donors so that organs can be safely used and not wasted. Finally, it provides specific guidelines for the healthcare teams managing such patients.

"Nowhere is the threat of H1N1 (flu) more real than in cardiopulmonary transplantation", Mandeep R. Mehra, editor-in-chief of the Journal of Heart and Lung Transplantation, says in a statement.

"The ISHLT's Infectious Disease Council has developed what is assuredly the most comprehensive and clinically relevant direction for prevention and management of H1N1 flu in donors, recipients, care providers and family members."

The guidelines are published online in the Journal of Heart and Lung Transplantation.

Help Spread The Word!

2009-10-29T08:45:00.004-04:00

Crystal Allure Designs Handcrafted Beaded Jewelry has been an avid supporter of the Lungs for Life Foundation since it began. Their cystic fibrosis and transplant awareness jewelry supports the mission of only the Lungs for Life Foundation.

The donations we receive from the sales of the awareness collection are unrestricted funds that allow us to open up our programs to a wider community of need, across the United States.

For that reason, I am asking for your help in spreading the word about Crystal Allure by asking you to become a fan of Crystal Allure's facebook page (ask your friends and family, as well).

Become a Fan of Crystal Allure

New Awareness Bracelets to Share!

2009-10-27T14:25:00.000-04:00

Don't you just love fresh, new, unique awareness jewelry designs?!

Three new awareness beaded bracelets have been added to the Crystal Allure Awareness Jewelry Collection. By popular request, one of the designs is for cystic fibrosis and the other two are transplant awareness.

By far, this is my most favorite. Why? Because the focal stone has a unique coloring that looks like a mix of both green and purple -the two most important awareness colors for cystic fibrosis and transplant! This is the Transplant Awareness Jasper Gemstone Beaded Bracelet.

These two beautiful stunners were designed specifically to provide jewelry with meaning AND to add a little sparkle for the upcoming holiday. Each showcases a shimmering Swarovski emerald or amethyst crystal cube and the pearl of hope accented with shiny sterling silver Bali spacers. Your choice of either the Cystic Fibrosis Awareness Crystal Beaded Bracelet or the Transplant Awareness Crystal Beaded Bracelet.

Best of all? They are all one of a kind! That means when you purchase one (or all!) of them -you buy that design. How exciting is that? It's like having your own name on that design!

And remember, each purchase helps support the mission of the Lungs for Life Foundation. Beautiful jewelry that does double duty.

Psst. I've heard there are many more unique awareness designs coming from Crystal Allure!

First and Longest Living Transplant Survivor

2009-10-26T12:51:00.000-04:00

...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

Pulmozyme: Help for pharma costs and co-pays

2009-10-22T11:00:00.000-04:00

If you don't have insurance or you need help covering the cost of your PulmozymeR (dornase alfa), check out www.PulmozymeAccessSolutions.com or call 1-800-690-3023.

Two Inspiring Videos for the CF Community

2009-10-20T11:00:00.000-04:00

Brian Gerofsky passed away from cystic fibrosis in May 2009 at age 57.

In this heartwarming video, his wife of 26 years and his two sons share
their fond memories of Brian.

Through them, we meet a man of strength and courage, and deep love for his
family.

Remembering Brian -A Wonderful Husband and Loving Father

---------

The song "Breathe" is about the search for a CF cure.

It was written by the talented English singer/songwriter Matt Scales, who
lost his battle with CF two years ago.

CFvoice brought three U.S. singers with CF together to create an inspiring
remix of this song.

Breathe Song

Robot Saves Patient's Transplanted Lung

2009-10-19T10:34:00.000-04:00

In a first-of-its- kind procedure, physicians at the Methodist DeBakey Heart & Vascular Center used a robotic catheter to save a patient's transplanted lung.

Dr. Alan Lumsden, chair of the department of cardiovascular surgery at Methodist, and Dr. Miguel Valderrábano, chief of the division of cardiac electrophysiology, used a robotic catheter to place a stent in a patient's pulmonary artery when it became severely narrowed after his transplant, potentially damaging the new lung.

Pulmonary artery stenosis or narrowing of the pulmonary artery that carries oxygenated blood from the heart to the lungs, can occur where the transplanted lung is sewn to the patient's own pulmonary artery. Physicians use stents, mesh tubes that are used to prop open clogged arteries, to restore blood flow to the lungs.

The lung transplant patient Charles Brennen was in danger of losing his new lung when physicians could not get the new stent in his artery because it was too twisty to maneuver the stent through the catheter from the groin to the damaged pulmonary artery. Furthermore, the placement of the stent was hampered by the pulsing of the artery due to the beating heart on one end of the vessel.

"I'm hoping that the stent will get more blood flowing to my lungs so I'll have more stamina," said Brennen, an active 72-year old father of five. "I want to get back in shape, do more things."

Brennen is a retired marketing executive who spends time working on the Texas ranch that he shares with his family and sister.

Lumsden and Valderrábano used a Sensei® robotic catheter system designed by Hansen Medical for use inside the heart to successfully reach the narrowed part of the pulmonary artery. The robot allowed the physicians to compensate for the motion of the beating heart, and place the stent safely and accurately, providing the patient's new lung with a ready flow of oxygenated blood. This was the first time in the U.S. that the robotic catheter was used outside of the heart.

Valderrabano used 3D guided imaging to direct the robotic catheter to precisely the right spot to place the stent. With successful implantation of the stent, the patient avoided being placed again on the lung transplant list.

Source: Methodist Hospital, Houston

Cystic Fibrosis "65 Roses" Awareness Necklace

2009-10-13T08:44:00.000-04:00

The first of its' kind is finally here! For years I racked my brain for a design that would symbolize the term "65 Roses" (cystic fibrosis, is often referred to as 'sixty five roses' by young children). I'm so happy with the design. Not only is the pendant bail a one-of-a-kind designer original the bead pattern is set so that groups of 6 and 5 crystals run throughout the necklace. Absolutely beautiful!Cystic Fibrosis Awareness 65 Roses Swarovski Beaded Necklace by Crystal Allure Designs

The story behind why cystic fibrosis is referred to as "65 Roses" by young children:

In 1965, after learning that her three little boys had Cystic Fibrosis, Mary G. Weiss began volunteering to raise money to cure cystic fibrosis. One of her duties was to call every civic club, social and service organization seeking financial support for CF research. Mary's four year old son, Richard, listened closely to his mother as she made each call. After several calls, Richard came into the room and told his mom, "I know what you are working for."

Mary was dumbstruck because Richard did not know what she was doing, nor did he know he had Cystic Fibrosis. With some trepidation, Mary posed the question back to Richard, "What am I working for, Richard?"

"You are working for '65 Roses'," he answered so sweetly. Mary was speechless. She went over to him and tenderly pressed his tiny body to hers. He could not see the tears running down Mary's cheeks as she stammered, "Yes, Richard, I'm working for '65 Roses'."

Shop the Crystal Allure Awareness Collection
Remember, each purchase helps support the mission of the Lungs for Life Foundation.

Raising Awareness of Cystic Fibrosis and Lung Transplant

2009-10-08T15:06:00.000-04:00

My dear friend, Pearl, who writes The Beading Gem's Journal recently posted on the topic: Awareness Jewelry to Aid Research and Help Families. She did her research and posted a fine summary of what cystic fibrosis is and then she so graciously talked about the awareness jewelry collection I have designed for Crystal Allure.

I'm so flattered and humbled! Thank you Pearl for your support and for sharing with your readers the Crystal Allure Awareness Jewelry Collection and helping to raise awareness of the Lungs for Life Foundation, cystic fibrosis and lung transplant. Pearl even mentioned my humble little blog, Breathe!

Thanks Pearl!

Back in Stock: Transplant Awareness Ribbons Bracelet

2009-09-21T08:32:00.000-04:00

There are currently 3 Transplant Awareness Ribbons Beaded Bracelets available for purchase. But hurry, this bracelet has been very popular and I don't suspect it'll be in stock for long over at CrystalAllure.com.More information and/or purchase the Transplant Awareness Ribbons Bracelet >>

Taking Flight -Inspirational Stories of Lung Transplantation

2009-08-14T08:09:00.001-04:00

The Lungs for Life Foundation 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.

Purchase Taking Flight

Transplant Awareness Bracelet being Retired

2009-08-11T15:31:00.000-04:00

Crystal Allure Designs has been designing and selling beautiful beaded transplant and cystic fibrosis awareness bracelets since the company first started. A portion of the proceeds of each bracelet sale is donated to the Lungs for Life Foundation, in support of its' programs and mission.

Due to changes in the production of certain materials used in their extraordinarily popular Transplant Awareness Ribbons Bracelet, the bracelet will be retiring. There will only be 10 more bracelets designed and sold. Don't miss out and reserve yours today. Every purchase of this bracelet (and other jewelry in the Awareness Collection) benefits the Lungs for Life Foundation.

The Butterfly: A Symbol of Lung Transplant

2009-08-07T10:59:00.000-04:00

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 the LFL Marketplace.

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.

In Memory..

2009-08-06T08:19:00.000-04:00

Today, I came to work intent on a celebratory post of someone's transplant anniversary and ironically, I learned a dear friend, colleague and Lungs for Life supporter had passed away.

David Messmer, aged 51, died August 1st at Duke University Hospital. For those of you who knew Dave, he had cystic fibrosis and received a double lung transplant many years ago. Recently, he went to Duke for a lung re-transplant, yet a few short weeks later he developed pneumonia.

David will be missed dearly. Please take a moment today and remember Dave.

New Lung Transplant Support Forum

2009-08-05T08:33:00.000-04:00

My good friend Joanne Schum (which many of you know already) has recently started a lung transplant support forum with a new host. A double lung transplant survivor herself, she offers a plethora of information and support connections for those affected by cystic fibrosis (CF) and transplant (TX). Here is what she emailed me:

Lung Transplant Support For Patients

Here is the website address:
http://health.groups.yahoo.com/group/LungTransplantSupportForPatients/
Here is the chat site:
http://xat.com/LungTransplantSupportforPatients

The group E-Mail is:
LungTransplantSupportForPatients@yahoogroups.com

I am hoping many people with various lung illness, and their friends and family will check it out and do some emailing. Presently it does not have a chat room, but I am researching this. We will talk illness and LUNG TRANSPLANT, both pre transplant and post transplant issues.

Just a bit of history on me. I am 45 years old, live in upstate New York. I had a double lung transplant, due to CF or Cystic Fibrosis. The transplant was September 12, 1997. I also compiled a book: Taking Flight- Inspirational Stories of Lung Transplantation in 2002. My transplant was performed at University of North Carolina Hospitals - Chapel Hill - Dr. Thomas Egan was my surgeon.

Please don't hesitate to email me: twoluckylungs [at] juno [dot]com -or -luckylungsforjo [at] aol [dot] com.

If you have questions about the site, ideas for the site, if you know a good chat room site, questions on transplant.

Thanks for your patience - this was a long time in the making, after the MSN Group closed. MSN shut down all groups they had.

Fall 2009 Current Fundraiser Online

2009-08-04T16:02:00.000-04:00

The Fall 2009 Current Fundraiser products are now available online. When you shop the secure online store and select the Lungs for Life Foundation as your charity of choice (at checkout), LFL receives up to 50% of your purchase!

It's quick, simple and you can shop from the comfort of your home for holiday gifts, decor, wrapping paper and so much more!

Personally, I love the giftwrap selection and this year, not only will I be ordering some more, I plan to order the dishwasher magnet (clean/dirty). In my house, if you are not the one who loads and unloads the dishwasher, you never know if they are clean or still dirty. This little helper solves my problem and donates 50% of my purchase to Lungs for Life! The purchase that gives back!

Happy shopping and thank you in advance for supporting the Lungs for Life Foundation.

>> START SHOPPING

Subscribe to BREATHE the easy way!!

2009-08-04T10:47:00.000-04:00

Managing the LFL Blog hasn't been easy thusfar and I am going to try this once again. Because of the "non-friendliness" of Wordpress and my familiarity already with Blogger, I've decided to move the Breathe Blog over to my Blogger account. To get us started I wanted to remind you of the ease of staying informed simply by selecting an RSS format comfortable for you. Read more below.

The easiest way to stay informed on the happenings at the Lungs for Life Foundation is to subscribe via our nifty RSS tool. So what is this RSS? It is an acronym for “Really Simple Syndication” and allows you to receive the headlines of the most current stories/news of your favorite websites (in this case, it would be for LFL).

Right over there in the left hand column under the title “subscribe” you have the option to subscribe via email or feed. What’s the difference?

If you subscribe via email, all you do is enter the email address you wish and each time a post is made in BREATHE, you will get an email about it. If you subscribe via feed, you have a variety of feeds to choose from. Many of you might already have My Yahoo or Google, simply select your choice of reader and you’ll start receiving the headlines of the Breathe blog posts.