Saturday, October 31, 2009

H1N1 Advisory for Heart/Lung Transplants

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.

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.


Thursday, October 29, 2009

Crystal Allure Jewelry: Awareness Bracelets

Crystal Allure Beaded Jewelry has been an avid supporter of Lungs for Life since it began in 2001. Their cystic fibrosis awareness jewelry and transplant awareness jewelry were the first pieces designed in support of Lungs for Life.

The monies received from the awareness jewelry collection allow me to continue publishing the Breathe Blog and provide informational resources to the Asthma, Cystic Fibrosis and Transplant communities.

Help Spread the Word
Please help spread the word about Crystal Allure Beaded Jewelry and the beautiful crystal awareness bracelets available. Many designs are one of a kind and none are mass-produced.


Tuesday, October 27, 2009

New Awareness Bracelets to Share!

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.

Jasper Organ Transplant Awareness Bracelet (B165)
Jasper Organ Transplant Awareness Bracelet (B165)
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 Jasper Organ Transplant Awareness Bracelet (B165).

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 Sterling Purple Cystic Fibrosis Awareness Bracelet (B166) or the Sterling Green Organ Transplant Awareness Bracelet (B167).
Sterling Purple Cystic Fibrosis Awareness Bracelet (B166)
Sterling Purple Cystic Fibrosis Awareness Bracelet (B166)
Sterling Green Organ Transplant Awareness Bracelet (B167)
Sterling Green Organ Transplant Awareness Bracelet (B167)
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 Lungs for Life Breathe Blog. Beautiful jewelry that does double duty.

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


Monday, October 26, 2009

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.


© Copyright (c) The Vancouver Sun


Thursday, October 22, 2009

Genentech Access Solutions: Pulmozyme Inhalation Solution

Genentech Access Solutions' moto is 'We focus on access so you can focus on health'.

It is without doubt they do just that. Access Solutions offers a full range of programs and services to meet the needs of patients and health care professionals. The help they provide for pharmaceutical costs and co-pays (when a Genentech medicine is prescribed) has been invaluable to thousands of patients.

The Access Solutions logo is a registered trademark of Genentech, Inc.
This assistance extends to those who are uninsured, have been denied coverage by their health plans, have concerns about co-pays or are worried about out-of-pocket expenses.

Below are just some of the services this program offers (when a Genentech medicine is prescribed):

Coverage -helps you with benefits and coverage issues such as benefits investigations and prior authorization.

Reimbursement -helps you by guiding you through denials and appeals and providing billing and coding information.

Patient assistance -can help you obtain the therapy prescribed, regardless of your ability to pay.

If you don't have insurance or you need help covering the cost of your PulmozymeR (dornase alfa) inhalation solution for the treatment of cystic fibrosis, it is worth the time to look into the Genentech Access Solutions program.

Genentech Access Solutions: Pulmozyme Inhalation Solution


Tuesday, October 20, 2009

Two Inspiring Videos for the CF Community

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

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


Monday, October 19, 2009

Robot Saves Patient's Transplanted Lung

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


Tuesday, October 13, 2009

Cystic Fibrosis "65 Roses" Awareness Necklace

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!

65 Roses Crystal Cystic Fibrosis Awareness Necklace (N088)
65 Roses Crystal Cystic Fibrosis Awareness Necklace (N088)
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'."

View the full Cystic Fibrosis Awareness Jewelry Collection

Remember, each designated awareness jewelry purchase from Crystal Allure helps support the Lungs for Life Breathe Blog.


Thursday, October 8, 2009

Raising Awareness of Cystic Fibrosis and Lung Transplant

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 Beaded Jewelry.

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 Lungs for Life, cystic fibrosis and lung transplant. Pearl even mentioned the Lungs for Life Breathe Blog!

Thanks Pearl!


About This Blog

Welcome to the Lungs for Life BREATHE blog. It is here that I hope to keep you informed, provide resources and just stay in touch with asthma, cystic fibrosis, organ donation and transplant communities.

Feel free to contact me with any questions or concerns you may have. Thank you.


The teal-green lung(s) graphic images were designed and generously donated to Lungs for Life by a young man, James Binegar, who lost his fight with cystic fibrosis while waiting transplant. We deeply appreciate James' work on our graphics and for donating his time to LFL. He will be missed but his memory will live on through our use of his graphics.

  © Blogger templates The Professional Template by 2008

Back to TOP  

Related Posts Plugin for WordPress, Blogger...