Thursday, April 30, 2015

April Awareness: Donate the Gift of Life

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 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.

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.

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.


Sunday, April 26, 2015

Learn About and Protect Yourself Against Lung Cancer

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


Monday, August 25, 2014

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 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 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.


About This Blog

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

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


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

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