A Thoughtful Commentary on the ALS Ice Bucket Challenges

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.

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What Color is Your Awareness Ribbon?

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.

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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 Pharmacy of Florida

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.

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Subscribe to BREATHE and Stay Informed

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.

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