A Little About Joanne Schum

Please note: This article originally appeared on our www.lungsforlife.org site and is being re-posted to our new Lungs for Life website (www.lungsforlife.info). Please take a moment and update your bookmarks with our new website link. Thank you.

Joanne Marie Schum is the youngest of seven siblings of George and Katherine Schum. Growing up in the Rochester, New York area with Cystic Fibrosis (a genetic lung disease), Joanne led a rather normal life, attending college, working in her chosen career field and being with friends and family.

As she reached her mid twenties, life became increasingly more difficult until it was nearly impossible to maneuver and have any quality of life. That is when a lung transplant became the top priority in her life. She temporarily relocated to Chapel Hill, North Carolina while waiting for a bi-lateral lung transplant. She received her much anticipated transplant at the University of North Carolina Hospitals Chapel Hill, on September 12, 1997. Her lung transplant has allowed her to become involved with many organizations; volunteering as a speaker; writing for various Cystic Fibrosis and lung transplant newsletters; board member and mentor.

Never an athlete, in her post-transplant days, she has taken to biking, running, walking, swimming and she participated in the 2000 and 2002 United States Transplant Games. She no longer passes up an adventure and can be found driving tractors, motorbikes, and has also flown in a High Performance Schleicher ASK-21 Sailplane. Her continued great health will allow her many more days with her new 'wings of breath' so she can travel, work, play and enjoy her family and friends.

Update:
Joanne has compiled two very popular cystic fibrosis and transplant resource books:

Taking Flight -Inspirational Stories of Lung Transplantation

Taking Flight -Inspirational Stories of Lung Transplantation, More Journeys

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Medicare adopts new nationwide coverage policy for The Vest airway clearance system

Please note: This article originally appeared on our www.lungsforlife.org site and is being re-posted to the new Lungs for Life Breathe Blog (www.lungsforlife.info). Please take a moment and update your bookmarks with our new website link. Thank you.

Medicare has adopted a new nationwide coverage policy for high-frequency chest wall oscillation medical equipment. The policy covers the use of The Vest system for patients with cystic fibrosis, bronchiectasis, and, upon case-by-case review, others fighting respiratory conditions. Below I have attached a copy of our press release dated today. For a complete overview of the policy please visit http://www.thevest.com.

This is tremendous news. Combined with our current policies – shipping The Vest system upon prescription, 30-day in-home trials, patient training, comprehensive reimbursement support and a lifetime warranty – this policy will help make the device immediately accessible to all your patients in need. And now the reimbursement process has just become easier for your Medicare patients – and for us. For that, we all have reason to celebrate.

Along with this improved coverage and easier reimbursement process your patients can have the benefit of the newest model of The Vest system, Model 104, which was just released last month. It offers the same consistent, effective airway clearance therapy as earlier models and it’s portable. Weighing only 17 pounds, it’s half the weight and one-third the size of our previous device – approximately the size of a portable audio system. It’s also digitally automated and easier to use, making it a great choice for all of your patients with airway clearance needs. And its new patient-friendly design makes it easier for patients to be compliant with your orders, resulting in improved outcomes.

Airway clearance therapy via The Vest system is an important part of the standard care regimen for patients with cystic fibrosis, cerebral palsy, muscular dystrophy, bronchiectasis, and COPD. In the last decade more than 30,000 patients have used The Vest system in their home to successfully manage their airway clearance needs, representing over 80,000 patient years of experience.

For more information on The Vest system please visit www.thevest.com. If you would like to visit in person with a local representative, please contact us at 1-800-426-4224 or send us your comments or questions on the web at http://www.thevest.com. We look forward to serving your patients with airway clearance needs. Thank you for your interest and support.

Sincerely,

Elden H. Russell
President, Advanced Respiratory

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NEWS RELEASE
FOR IMMEDIATE RELEASE

Advanced Respiratory applauds Medicare’s adoption of a nationwide coverage policy for The Vest airway clearance system

New coverage policy will help patients with cystic fibrosis, bronchiectasis and other respiratory conditions breathe easier

ST. PAUL, Minn., June 16, 2003 – Advanced Respiratory, manufacturer and distributor of The Vest™ airway clearance system, today reported that Medicare has adopted a nationwide coverage policy for the use of durable medical equipment that provides high-frequency chest wall oscillation (HFCWO) therapy.

The coverage policy applies to patients with cystic fibrosis and bronchiectasis, and, on a case-by-case review, patients with other respiratory diseases or conditions.

“We applaud Medicare’s decision, as it will have tremendous impact on the health and quality of life of Medicare patients who are fighting to breathe," said Elden Russell, president and CEO of Advanced Respiratory. "With The Vest system, patients can easily and effectively remove trapped secretions from their lungs. This leads to easier breathing, less infections and hospitalizations, and improved health." Medicare is one of over 1,100 insurers that pay for The Vest system.

The Vest Airway Clearance System

The Vest system is a small and powerful, but gentle medical device – employing HFCWO technology – used in patients’ homes to provide airway clearance therapy. Approximately the size of a portable audio system, the device consists of an inflatable vest attached to an air-pulse generator. The generator rapidly inflates and deflates the vest, compressing and releasing the chest wall 5-20 times per second to create airflow within the lungs. Its gentle pressure moves trapped mucus from the smaller airways in the lungs to the larger airways, where it can be removed through coughing or suctioning. The action also works to thin thick secretions, making them easier to clear.

Advanced Respiratory Inc., headquartered in St. Paul, Minn., is the privately-held manufacturer and distributor of The Vest airway clearance system. For more information about the types of patients that could benefit from The Vest system, Advanced Respiratory and its products and services, visit the company’s Web site, http://www.thevest.com.

Contact:
Kerstin March, Advanced Respiratory, 651.234.1633

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Advanced Respiratory Announces FDA Approval for The Vest

Please note: This article originally appeared on our www.lungsforlife.org site and is being re-posted to the new Lungs for Life Breathe Blog (www.lungsforlife.info). Please take a moment and update your bookmarks with our new website link. Thank you.

The new Vest system Model 104 gives the same consistent, effective airway clearance therapy as earlier models and it's portable. Weighing only 17 pounds, it's half the weight and one-third the size of our previous device. It's also digitally automated and easy to use, making it a great choice for all of your patients with airway clearance needs. The new patient-friendly design will make it easier for your patients to be compliant with your orders, resulting in improved outcomes.

The Vest system has become part of the standard care regimen for patients with cystic fibrosis and is rapidly becoming the airway clearance therapy of choice for patients with cerebral palsy, muscular dystrophy, bronchiectasis, and COPD. In the last decade, more than 30,000 patients have used The Vest system to successfully manage their airway clearance needs, representing over 80,000 patient years of experience.

As a company, we have worked hard to earn your confidence and appreciate your support of The Vest system. And our commitment to you and your patients remains as strong as ever. Along with the introduction of the new Model 104, Advanced Respiratory will continue to offer immediate shipments, 30-day in-home trials, patient training, comprehensive reimbursement support, and a lifetime warranty.

We are excited about our newest model of The Vest system and the opportunity it affords patients and caregivers to benefit from effective airway clearance therapy. We trust you will also be delighted as you see the new device and hear the success stories from your patients.

Sincerely,

Elden H. Russell
President, Advanced Respiratory

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NEWS RELEASE
FOR IMMEDIATE RELEASE

FDA clears new medical device for nine million Americans with chronic lung disorders

Gentle Vest therapy replacing old “pounding” chest physical therapy in home

ST. PAUL, Minn., May 19, 2003 – Breathing comes naturally to everyone – but for millions of people, it does not come easily. For the nine million Americans fighting chronic lung disorders and diseases such as cystic fibrosis (CF), cerebral palsy (CP), muscular dystrophy (MD), and chronic obstructive pulmonary disease (COPD), Advanced Respiratory, Inc. today announces U.S. Food and Drug Administration clearance for The Vest™ airway clearance system Model 104. This small and powerful, but gentle medical device – employing high frequency chest wall oscillation (HFCWO) technology – is used in patients’ homes to replace manual chest physical therapy (CPT).

The Vest Airway Clearance System

When people catch the common cold, they usually become congested and have more difficulty breathing. Fortunately, the body is able to move the congestion, or excess mucus, out of the lungs by coughing so the individual can breathe easily again.

Breathing is not effortless, however, for those people whose disease creates more mucus than the body can remove naturally, or for those who have an impaired cough reflex. When mucus is trapped in the lungs, it creates an ideal breeding ground for infection. This causes the body to produce more mucus. The result is a cycle of recurrent episodes of respiratory inflammation, infection and, eventually, irreversible lung damage. To stop this cycle, those individuals require effective airway clearance therapy.

CPT – the repetitive, manual pounding on an individual’s back and chest – has traditionally been used to loosen secretions in the lungs. In fact, forms of CPT have been used to help manage airway clearance disorders since the early 1900s, and became widely recognized for CF patients in the 1960s. As a modern alternative, The Vest system is gradually replacing CPT as a gentler, painless in-home therapy. The Vest system also makes airway clearance therapy possible for patients who do not have access to CPT, or for whom CPT is not recommended.

Unlike CPT, The Vest system enables patients to receive airway clearance therapy without being dependent on parents or caregivers. Since The Vest system eliminates the need for pounding and positioning that is required with CPT, patients are also able to do other tasks while receiving therapy, such as nebulizer treatments, reading or working on the computer. Therapy with The Vest system is now standard care for patients with CF and is becoming recognized for CP, MD, bronchiectasis and COPD. It is reimbursed as medically necessary equipment by over 1,100 health plans and government programs across the country.

The Vest system is a medical device consisting of an inflatable vest attached to an air-pulse generator. Using HFCWO technology, the generator rapidly inflates and deflates the vest, compressing and releasing the chest wall 5-20 times per second to create airflow within the lungs. Its gentle pressure moves trapped mucus from the smaller airways in the lungs to the larger airways, where it can be removed through coughing or suctioning. The action also works to thin thick secretions, making them easier to clear.

The new model of The Vest system is smaller and more portable than the previous model. In fact, at 17 pounds, it is half the weight and one-third of the size – approximately the size of a portable audio system.

“Everyone knows that a person’s ability to breathe is vital. When breathing is impaired, it threatens your strength, your health, and in the worst case, your life," said Elden Russell, president and CEO of Advanced Respiratory. "With The Vest system, people are breathing easier. They have access to therapy that fits into their lifestyle, is easy to administer, and most importantly – improves their pulmonary health."

That could help millions of Americans breathe a little easier.

Advanced Respiratory Inc., headquartered in St. Paul, Minn., is the privately-held manufacturer and distributor of The Vest airway clearance system. For more information about the types of patients that could benefit from The Vest system, Advanced Respiratory and its products and services, visit the company’s Web site, http://www.thevest.com/.

For interviews, photographs, video or demonstrations of The Vest system, contact:
Kerstin March, Advanced Respiratory, 651.234.1633
Gwen Chynoweth, Maccabee Group, 612.337.0087

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Cystic Fibrosis Explained by Oli and Nush

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!

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Petition to Enable Treatment of Cystic Fibrosis in Japan

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/

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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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