“Breathing involves a continual oscillation between exhaling and inhaling, offering ourselves to the world at one moment and drawing the world into ourselves at the next…” David Abram, Becoming Animal: An Earthly Cosmology

469px-Lungs_diagram_detailed.svgBreath: So necessary to the maintenance of life and so often a metaphor for life and spirit. Every year around this time, I take advantage of my blog to change the subject and write about diseases that harm the mechanism of breath, our lungs. I don’t do this to draw attention to myself. I do it to draw attention to the lung disease. I want people to be aware because Interstitial Lung Disease (ILD) can go undiagnosed or misdiagnosed and unattended for too long adding even more devastation to what is frankly horrific.

This year I was contacted by Heather Von St. James who wrote to me saying, ” I am an 8-year survivor of mesothelioma – a rare cancer caused by asbestos exposure. When I was diagnosed, I had just given birth to my little girl and was told I had 15 months to live. After undergoing a risky surgery, which required the removal of my left lung, I beat the odds and created Lung Leavin’ Day as a way to commemorate this day that changed my life forever.

“Lung Leavin’ Day is now used to encourage others to face their fears! One important thing cancer taught me is the importance of acknowledging these apprehensions that prevent us from living life to the fullest extent. Each year on February 2, friends and family gather at my house for a bonfire where we write our fears on plates and smash them into the fire.

“This year, we are asking bloggers to face your fears and raise awareness of this event by virtually participating in Lung Leavin’ Day! I have created an interactive page that tells the full story of this special day, which can be found here: Lung Leavin’ Day. 

“I would love it if you would check out the page and share it on your blog to help spread the word about Lung Leavin’ Day!”

800px-Kitchenware_Melamine_Plate_RezowanAnd so I encourage you to visit Heather’s blog. Learn about Mesothelioma. Face your fears – whether they have to do with lung issues or other challenges – and break a virtual plate by way of symbolically breaking your fears.

“Every damn breath hurt like hell, but I kept Breathing too. I told myself it would be a privilege to breathe through pain like that for the rest of my life – just knowing each breath was a gift.”  Rachel Van Dyken, American Romance writer

LLD-TalkingPlateIn the video below, Heather tells her story – or so I assume. I have to admit, my own experience with ILD is such that I can’t watch the video or read Heather’s entire story. I am, however, one of the lucky ones. I was diagnosed with Idiopathic Pulmonary Fibrosis (IPF) in 1999 and given two years. This condition turns lungs into scar tissue and scar tissue isn’t permeable enough for breathing.  IPF is fatal, usually within five years of diagnosis. As it happened, I responded to drug interventions and it became clear to all of us that I don’t have IPF.  

We went for years with the diagnosis-of-the-month or year. Now, thanks to my fabulous physicians, my condition is “managed.” I am considered chronic and stable and have a precise diagnosis: Hypersensitivity Pneumonitis, one of the many different kinds of ILD. I have an oxygen compressor and portable oxygen and medications that do not heal but do slow disease progression. I am in an excellent (99% success rate) pre-transplant program at a renown research and teaching hospital.

Heather lives with one lung. I live with two damaged lungs. Neither of us are going to run marathons, but we’ve both beat the odds. We’re both still here with our families and friends and we both live rewarding lives. The age of miracles is not dead and however imperfect our healthcare system is, people like Heather and me would not be alive without the advantages it does offer. Thanks to a combination of the best health care providers, our own internal resources and our families, we experience big and small victories and major love every day.

Please read about and be aware of the symptoms of lung disease and if you have any doubts about your lung health, see your doctor. Take advantage of the tools and expertise available for diagnosis, help and care. Remember that in these matters, timely action improves your chance of survival and the quality of your life as a survivor.

Illustration and photo credits ~  lungs/Patric J. Lynch, medical illustrator under CC A 2.5 Generic license; dish/Rezowan via Wikipedia under CC A-SA 3.0 license

19 Comments

  1. Reblogged this on THE BARDO GROUP and commented:
    Heather Von St. James is an eight-year survivor of mesothelioma, a rare cancer caused by asbestos exposure. She initiated Lung Leavin’ Day to encourge people to face their fears, whatever those fears might be. Together she and Jamie Dedes share some of their experiences with and victories over Interstitial Lung Disease (ILD) and encourage you care for yourself.

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  2. I am glad to know that your illness is now manageable. It is scary, being not able to breath. When I was very young, I had asthma. Thank God, it went away when I turned a certain age. However, I saw some of my friends suffer and manage their condition.
    All the best, Jamie. Take care. 🙂

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    1. I’m glad you don’t have asthma anymore. Apparently it is not uncommon for childhood asthma to pass with the years. Phew! Be well, Imeda. Keep those lovely flower photos and poems coming …

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  3. I have COPD and have been working my lungs in the best ways I know how – especially with diet, walking and Yoga. Consequently the last test (3 years since the previous one) showed no change. That’s as good as improvement in my mind – since, alas, I realize aging is happening .

    I’m very determined to keep a positive attitude.

    Thank you for the description of your condition, Jamie. And a huge congratulations. When we first connected, you were waiting for a transplant. So you really have done some great sleuthing. As you inferred, we have to be strong advocates for ourselves these days. We need to get through robotic responses and insist upon understanding consequences of our decisions.

    My doctor is frustrated by the Internet because she says she spends a lot of time “undoing” info not applicable to a particular patient. However, it really helps me formulate some of the questions I may not otherwise ask.

    Now, I’m even very careful about what tests I have done. Once a condition, no matter how slight, is on our chart, we can’t remove it. I’ve learned all of us are walking around with various anomolies inside us – scars, lumps, discolorations. When we begin testing, these things show up, of course. We can fall into some negative attitudes. My friend who taught nursing told me the list of weird items that happily attached themselves to her different organs. She just watches them. No meds needed – they don’t have to bother her. She said they won’t kill her. However, she avoids exacerbating them.

    That’s how I feel about COPD. I walk hard and frequent. My heart is in great shape. I become short winded on major hills – so do my even younger walk buddies. As a friend said when he was diagnosed with colon cancer – “something has to kill me. Better I know what that may be.”

    Thanks for the video – I empathise with her vis a vis the responses she receives from others when she is determinedly positive.

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    1. I would agree that “stable” is a victory and diet and exercise are the best medicine along with family and good friends and a life of the mind and spirit. What a wonderful job you are doing. Thanks for sharing your story – another heroic journey – enriching my life and those of other readers, Amy.

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    2. As Amy knows I was diagnosed with lung cancer and had the top lobe of my right lung removed — that was 24 yrs ago and other than shortness of breath at times I have been blessed with good health since that time. My heart goes out to every one with any lung disease because ” breath is life”

      .Carol

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  4. I put up a post today too on Lung Leavin’ Day, Jamie…had received an email from Heather’s husband, Cameron to help spread the word. I was happy to see that you posted one and went on to share about your lung issues too. Even having a cold can turn many of us into whiney babies when our breathing is constricted, and there are so many who have to contend with much worse on a day to day basis. I am so glad that our paths crossed, Jamie…you are a blessing.

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    1. I’ll have to pop over and visit. I’m glad you that you posted too. Lung disease has a way of creeping up on people before they realize what is happening, which can then be too late. Awareness is key. I would submit that you too are a blessing and I’m so grateful that we’ve encountered one another. So many good friends for whom we have Jingle to thank. Be well, little Grandmother. 🙂

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  5. Thank you for sharing this, Jamie. Your private references to your chronic illness and the use of “interstitial” in your poetry are now housed in an explanation in my brain. It is one thing to be curious, another to be compassionate. I imagine you drawing waking breaths in a new way, and my heart goes out to greet you.

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  6. You are a wonderful and brave woman. For 25 years as a respiratory therapist I cared for those with both obstructive and restrictive lung disease. I acquired asthma about 5 years ago, but I am lucky in that it is well managed. This is an excellent post Jamie.

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  8. This is rather terrifying. Anything involving the breath can make one feel powerless, under attack–so frightened. I have minor lung issues that I can’t stand todealwith, so this resonates especially. I am so very sorry to hear of your diagnosis.that must be terribly difficult– you seem to manage beautifully, still it must be hard. K.

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    1. You are right. Any constraints on the breath leave us feeling vulnerable and sad … and some of the sad part is the chemistry that’s involved. Hard to deal with and thank goodness for some pretty miraculous drugs. The growing numbers of people with ILD of one sort or another, often suffer as the result of environmental issues. There are over 160 different cause of ILD.

      K., I am so sorry to learn that you have a lung issue too. Nonetheless, you are so productive and so full of talent and cheer … and certainly much appreciated. Breath deep. xo

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Thank you!