Lungs for Life BREATHE Blog

April Awareness: Donate the Gift of Life

2015-04-30T09:05:00.000-04:00

April is both National Donate Life Month and Organ Donation Awareness Month making it the perfect time to consider registering to be an organ donor. If you are already and organ donor, congrats! And thank you! Maybe this is a great time to spread the word and share your decision with friends and family...you just might inspire someone to register.

There are many misconceptions about being an organ donor. From personal experience, there is one misconception I'd like to clear up.

Myth:
If you're not in great health, you shouldn't or couldn't sign up or be an organ donor.

This is absolutely not true and couldn't be farther from the truth.

While it is true you may not be able to donate certain organs, there are other organs and/or even tissues that may be perfectly fine and usable.

The day my brother lost his battle with cystic fibrosis, the first thing I thought about was organ donation. We had actually been right in the middle of fundraising for his double lung transplant and we had learned so much about organ donation and transplant. It just seemed like the right thing to do.

Unfortunately, at that time that I was fundraising for him, I was also working a full-time job, a part-time job and taking college courses part-time. I know.....when did I possibly have time to do fundraising?! I will not lie. It was not easy. But, I did it.

Having all that responsibility......I just never thought to have that conversation with him. You know, the one that would answer that question, "Do you want to be an organ donor?" I guess a part of me figured he would have most certainly had that conversation with his wife -right?!

That day when I got the dreaded call...Eddie was losing his fight. I was completely heart broken and devastated that he passed before I got to his room. I never got to say goodbye; to say it was okay to go; or to say I was sorry that I couldn't do more to have changed his circumstances.

As I stood next to him in his bed, the nurse had come in and asked my mother if she wished to have him be an organ donor. Her response, "I don't think there is anything (organ) good he could donate." I glared at her and said, "That's not true!" But, in the end, she was listed as his health proxy, so I didn't have a say.

At that time, I was angry with my mother for thinking he (my brother) could in no way be an organ donor. It was almost as if she was saying he was damaged. He was not damaged! Looking back, now, I think her response came from a place of fear/uncertainty and lack of knowledge. I knew, he may not have been able to donate his lungs or pancreas, possibly a few other organs -but, he could donate organs and even tissue(s).

The point of sharing my very personal experience with you is to educate through experience, as my grandmother always said, "Knowledge is power." Yes, my brother had cystic fibrosis but that did not disqualify him from being an organ donor. Please talk with your health care provider, transplant clinic and family. Educate yourself, and above all, please consider being an organ donor.

Fact:
One organ donor can save up to eight (8) lives! That same donor can also save or improve the lives of up to 50 people by donating tissues and eyes!¹

Remember -you can save a life -register to be an organ donor and Donate Life, today.

Learn how to register and become an organ donor from the U.S. Department of Health and Human Services, Donate the Gift of Life.

¹LiveOnNy: Organ Donation Facts and Information.

Learn About and Protect Yourself Against Lung Cancer

2015-04-26T20:42:00.003-04:00

April is National Cancer Control Month

Heather Von St. James
Wife, Mother, Survivor
Photo source

Have you ever heard of "National Cancer Control Month"? Me neither. Which is exactly why I'm sharing this newly learned information with you. I was first introduced to Cancer Control Month by mesothelioma cancer survivor, Heather Von St. James, who was diagnosed with pleural mesothelioma at just 36 years of age.

The purpose of recognizing National Cancer Control Month is to honor the fight against Cancer. Many of us are already familiar with the various cancer awareness months spread throughout the year. So, you might be asking yourself, 'Why is raising awareness of Cancer Control Month so important'?

According to Heather, "This year, an estimated half a million Americans will lose their lives to cancer, and 3 times that many will be diagnosed. Prevention and screening are the best defenses against cancer, along with education and research."

That's far too many losses! I am only too happy to help raise awareness of Cancer, Lung Cancer and prevention. The best way(s) to reduce your risk of cancer is through prevention and lifestyle changes that include: quitting tobacco, eating healthier, exercising regularly, using sun protection and undergoing recommended screenings.

It can seem overwhelming to think about ALL cancers, so let's narrow our talk down to lungs and lung cancer. I, personally, know all too well the importance of healthy lungs and taking care of those little butterflies in our chest. Learn about why the butterfly is a symbol of lung transplant.

Although my late brother, Eddie, didn't exactly have a choice with his lung disease (he was born with cystic fibrosis); he did have choices on taking care of them in the best way possible. I, too, have choices in protecting my lungs and controlling for any possible asthma triggers. For anyone suffering from either of these lung diseases, one of the best ways to take care of your lungs would be to quit smoking and/or stay away from cigarette smoke.

We've all no doubt seen those commercials of Doug who had mesothelioma. Sadly, Doug passed away in 2012. Mesothelioma is a form of lung cancer that is both aggressive and difficult to treat. But -it can be treated. Learn more about mesothelioma treatment.

Did you know mesothelioma can also be caused by asbestos fibers? And that the chances of developing the disease still exists, when there is a genetic predisposition to cancer, even if you were only minimally exposed to asbestos.

The mere presence of asbestos in not necessarily a problem. The problem begins when the asbestos becomes damaged or breaks down over time and releases asbestos fibers into the air we breathe. If you believe your home may have asbestos in it, contact a licensed abatement professional.

It is my hope that this information on Cancer, Lung Cancer and raising awareness of National Cancer Control Month will help you, a family member, relative or friend. Additional resources on asbestos, mesothelioma treatment and prevention can be found below.

Please help me to raise awareness of National Cancer Control Month and this information article by sharing this post link with your friends and family. Have you had an experience with any of the causes listed in this article? Please comment and share your experience with us.

Learn more about:
-Asbestos in the home
-Mesothelioma prevention

A Thoughtful Commentary on the ALS Ice Bucket Challenges

2014-08-25T08:49:00.000-04:00

I am part of a lung transplant group on Facebook and recently another member posted a powerful message in response to the ASL ice bucket challenges circulating the internet. She has given me permission to share her message and it is definitely "food for thought".

Posted by: Kara D.
I wrote the following on my wall in regards to all of the ALS posts that has bombarded my wall, as I'm sure everyone else's...sorry in advance for the long post!

I am amazed that ALS has been able to raise so much money in such a short amount of time, and I am happy for them and their cause. At the same time, when I scroll through to see all the videos of people pouring buckets of ice water on their heads, I can't help but think, are these people donating, or just pouring water on their head because everyone else is doing it, and it's the "cool thing to do" right now? I wish there was some sort of trend I could start that would go viral to get organ donation awareness out there. I live every day half fearing if today is the day my lungs start to fail again. I look at my kids and see my oldest graduating this year...will I make it to see his graduation? In "good" shape? On oxygen? Or worse...not here?? What about my other 2 kids. My youngest will be in 6th grade. Will I still be here in 6 years to watch him graduate? Every day, my day is a big, fat question mark.

Not everyone is an organ donor. Some fear that if they are in an accident and the EMS sees you are an organ donor that they won't save you. FALSE! For me to even get my lungs, my donor had to have been declared brain dead at the hospital on life support. She could not have perished at home or anywhere else. Some think that they are too old to donate. I just recently read of a 92 year old woman donating when she passed!! Some think religion separates them from donating. Wrong again. Some people want to donate, but don't have it on their license, nor have they told their families of their wishes....the family that is grief stricken when they know they have lost you, wants to keep you whole and decides not to donate your organs, eyes, or tissues. That's at least 8 lives, probably more that could have been saved. There are so many that die while waiting for their life-saving transplant. Instead of the 1 donor that passes on, 8+ more people pass along with them. We need more education for everyone.

We also need more research money for transplants. I'm living on borrowed time, like I said before. My lungs could reject tomorrow...next week...next month...2 years from now...20 years from now. I don't know when, but they will. At this current time, transplant is NOT a cure. It's a temporary fix. A band-aid. With more research money, they could come up with new and improved ways to make it so your transplanted organs will become a part of you, instead of a foreign body in your system that every single day it's a fight and a struggle to keep them.

I'm not bashing ALS, or what they've done by any means. It's genius that they've been able to get in the spotlight the way that they have. I'd love to know or figure out a way to get organ donation awareness out there too...after all, it's a death sentence for us too.

I posted the below comment on a friend's post that said she would not be doing the ALS challenge since they have been blessed with so many donations already. She instead, is donating to the Arthritis Foundation in honor of her mother who suffers from osteoarthritis and will need surgical treatment.

My comment:
"Good for you! While ALS is a horrible disease, there are also so many other diseases out there that need attention, help, and awareness. Organ donation is one I'd like to see go viral. There are so many that die on the waiting list because there are not near enough people that have signed up...so we lose at least 2 lives, but many more when one person doesn't say yes on their drivers license. Plus any money raised could help researchers find a way to help make transplanted organs so they would never reject in the recipient. One is not cured after transplant...we are simply living on "borrowed time". I'm glad you are donating to a cause close to your heart instead."

My apologies on the long post...I just felt this all building up.

So what do you think of Kara's comments? Share in a comment below.

What Color is Your Awareness Ribbon?

2014-08-18T10:20:00.000-04:00

Since the early 1970s, awareness ribbons have been recognized and used to raise awareness of diseases and causes. However, so many designations have been made that it can be confusing to know what color represents the cause closest to your heart.

What Color is Your Awareness Ribbon?

To help answer that question, I'll list a few of the causes that I have come across during my ten-plus years of designing crystal awareness bracelets and handmade jewelry. For those of you who know me, you know topping that list are the following causes and nationally recognized awareness ribbon color(s):

Cystic Fibrosis -purple awareness ribbon
Organ Donation -green awareness ribbon
Transplant -green awareness ribbon
Lung Transplant -green with a butterfly as the symbol designating the transplant is specifically 'lung'

I've been honored over the years to also design custom awareness bracelets for a variety of related causes that include the following causes and nationally recognized awareness ribbon color(s):

Pulmonary Fibrosis -red and blue awareness ribbons
Asthma -gray awareness ribbon
Behcet's Disease -light blue awareness ribbon

If you do not see your cause listed, please check out the full and comprehensive Awareness Colors and Meanings article or the Awareness Ribbons by Cause Color article both by Crystal Allure Beaded Jewelry.

I hope this information has helped guide you in understanding some of the nationally recognized awareness ribbon colors for the cause(s) closest to your heart. And if you don't find your cause listed, please visit the articles, I'm sure you will find them there.

That said....What Color is Your Awareness Ribbon? Share in a comment below.

A Little About Joanne Schum

2014-07-05T08:00:00.000-04:00

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

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

2014-07-03T08:00:00.000-04:00

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

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

Advanced Respiratory Announces FDA Approval for The Vest

2014-07-01T15:17:00.000-04:00

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

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

Cystic Fibrosis Pharmacy of Florida

2014-06-26T19:12:00.000-04:00

If you do a search for "cf pharmacy" or "cystic fibrosis pharmacy", the CF Pharmacy of Florida does not come up as the first link. BUT, if you are a savvy internet user, you know that sometimes the best of links are not always the first ones listed!

Go down a little further and you will find the title "Freedom HHCS", which also isn't very recognizable -but look at the web address link and you will see "mycfpharmacy.com". Back in 2006, a patient contacted Lungs for Life for assistance and introduced us to the CF Pharmacy. I made contact with Beverley Donelson (a.k.a. "Grandma Bev") asking for more information on the CF Pharmacy.

One of the questions I asked was for clarification on whether the CF Pharmacy of Florida was affiliated in any way with the Cystic Fibrosis Foundation's (CFF) pharmacy.

Bev immediately responded to my email and here is a summary of that response:

The CFF has a pharmacy. They don't run it. They subcontract the services of another Rx (pharmacy). They do not have a pharmacist (on staff). They can ONLY sell to those with CF and TX (transplant), if they have CF -and only medications.

The CF Pharmacy of Florida were the first, and for over 6 years, the only Cystic Fibrosis PHARMACY in the USA. We service folks all over the world (if their country allows).

We specialize in all Respiratory, TX meds, Diabetes meds and equipment/supplies. We also do alternative meds. We have all nutritional supplements. We do compounding to order and IV's. We also flavor meds when asked (if possible). We deliver directly to your home or address you tell us to. We send out automatically each month as requested. We call for refills for you when needed.

CF Pharmacy of Florida
www.mycfpharmacy.com
1-888-307-4427

If you still have questions after reviewing the information on their website, you may contact Beverley Donelson via email: bevd [at] hhcs (dot) com.

Feel free to comment below on your experience with the CF Pharmacy of Florida and/or additional information not already contained in this blog post.

You may also share this blog information article through any of the social sharing options below.

Subscribe to BREATHE and Stay Informed

2014-06-18T10:22:00.001-04:00

The year 2014 has become the year of changes. Not all of us welcome change. But, the changes with Lungs for Life and the BREATHE Blog are all good ones!!

I am slowly getting around to dissolving the charity portion of Lungs for Life, so that I can put my focus on providing resources and information for cystic fibrosis, organ donation and transplant. Also, you will notice the addition of Asthma to the BREATHE Blog. Adding this lung disease made sense, (a) because I have Asthma and (b) it affects the lungs which was/is the core focus of Lungs for Life.

Changes are coming for the look and feel of the blog too, but for now I wanted to let you know of an important change that has already been put in place. This recent change affects all of you who had previously subscribed to the Lungs for Life BREATHE Blog. The RSS feed address has been updated and to continue receiving post alerts, you will need to update your feed. The good news -it's really easy!

For all current and NEW subscribers, simply select your feed method (by RSS or Email) using the buttons near the top, in the right hand column (see image above for what to look for). Subscribing is FREE and the best part is you will always receive valuable blog updates.

I am looking forward to sharing with you all the information and resources I have gathered over the years.

Bronson Hill Arts: Butterfly Notecards

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 the Lungs for Life Breathe Blog and for being a sponsoring supporter.

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.

Word Décor 'n More: Wall Quotes

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

UPDATE (6/16/2014): This partner is no longer supporting the Lungs for Life Breathe Blog

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.

Floating Ribbon Organ Transplant Awareness Bracelet (B177)

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

Currently, there is only 1 available of this designs so don't miss out. Hurry on over to Crystal Allure Jewelry and snag it before it's gone!

Unusual Gifts That Make You Think Twice

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

photo source

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 Jewelry 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 Beaded Jewelry Designs is a beautiful Lovely Lampwork Ribbon Cystic Fibrosis Awareness Bracelet (B151) designed with artisan lampwork purple ribbon awareness glass beads, accented with Swarovski Austrian Crystals, and a mix of both goldfill and sterling silver metals.

Lovely Lampwork Ribbon Cystic Fibrosis Awareness Bracelet (B151)

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 Ribbon Earrings (E220) for a complete awareness jewelry set!

Cystic Fibrosis Awareness Ribbon Earrings (E220)

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