What’s it Like to Live with Lung Disease?

Feb 04, 2020

It is estimated that chronic lung disease impacts more than 13% of the adult population in the United States.  That’s a serious chunk of us.  There are two broad types of lung disease, obstructive and restrictive.  Their names give away a lot about the disease types: obstructive diseases are ones in which the airway is impeded (it, in fact, obstructs the exhale) and, and in restrictive diseases the lungs are prevented from fully inflating (restricting the inhale).  Half of us with lung disease have COPD, or Chronic Obstructive Pulmonary Disease.  From, mild and barely noticeable, intractable and terminal, COPD is a category of illnesses ranging from asthma and chronic bronchitis, to emphysema.

For me, lung disease came on fast and furious.  In May I noticed I was having difficulty going up a flight of stairs without being winded, and within six months I needed oxygen, and before a year had passed, I was referred for a double lung transplant.  It was a harrowing, terrifying, and rapid journey.  My lung disease is restrictive.  I was at risk for it because of the pack my autoimmune diseases travel in called antisynthetase syndrome, it is a rare set of diagnoses.  However, the lung disease component is less rare.  It is called pulmonary fibrosis and most people diagnosed with it do not know the disease’s genesis – so, I’m lucky/unlucky.  Unlucky because I have it, lucky because I know WHY I have it.  The disease is progressive and irreversible.  In it, the small alveolar sacs in my lungs, that deliver oxygen to the bloodstream, are turning themselves to scar tissue.  Because of that, I cannot inhale, inflate, and expand my lungs as someone of my height/weight/age would be expected to (therefore, restrictive classifying it as a lung disease).  Also, because of the scarring in my lungs, what oxygen I can inhale has a difficult time passing through the scarred and thickened tissue into my blood stream.  So, it’s a double whammy of difficulty: less oxygen and less permeability.

You don’t know how central breathing is to every activity in live until it is made more conscious and difficult.  Everything from walking at a reasonable pace, to talking, laughing, crying, eating, not to mention what we know are big ticket items like exercise or sex, takes more oxygen.  In just several months’ time I went from someone who could breathe and had learned, over a couple of years of illness, to take solace in meditation; to having my breath be a scary experience.  I was now more trapped than ever in the prison of my body.  When I was laying down, at rest – which was most of the time, (remember, I was recovering the ability to stand, walk and roll-over, due to my muscle-wasting disease) I couldn’t catch my breath.  For someone who has never experienced this sensation, the only way I can approximate it is to describe it like trying to swim too far at a pace that was a bit too fast for me: over-exerting and not getting enough time when my head was out of the water for a full breath of air.  Feeling like I was close to drowning all the time and just getting “sips” of oxygen; never able to scream, cry, yawn, take a deep breath, or even sit in peace and stillness without feeling like I was about to suffocate.

I am not an anxious person, and yet, a new kind of anxiety gripped my waking moments.  Sleep, always elusive in my life, became even more difficult because in the stillness and quiet it was impossible not to focus on the shortness of my breath, the ragged burning in my lungs, the sensation of hunger for air, the fact that my 12 pound dog was taking longer breaths than me.  I asked my doctors for medication to help me sleep, and to help calm my agitated nerves.  I searched for alternatives about where to rest my mind in meditation.  Centuries of meditation practice focus on the inhale and exhale as the way to connect with the present moment.  I’d never experienced anything so terrifying.  My mind couldn’t find a peaceful place.  I turned to TV and other distractions during my waking hours to try and numb out and escape from the reality of my body.  And yet, I yearned for something more connected. 

Eventually, with compassion, patience, and a lot of practice (trying it and stopping almost immediately) there were two practices that eventually gave me ability to stop the anxious spin, or at least slow it when it would take hold.  One was a meditation practice, the other a grounding exercise.  Struggling to return to the peace I’d once cultivated by taking refuge in the present moment through meditation, I sought a way to connect to my body and the eternal now that wasn’t breath centered.  Looking for another bodily function I could focus on, I learned, with stillness and patience, to attend to my beating heart.  While our heartbeat is a much more subtle cue, and much less easy to control than an inhale and exhale, it became my new beacon, the point around which I was orienting It was like trying to tune in to a radio frequency in a town a bit too far away – distant and not always coming in clear.  In some ways, its subtlety is what made my heartbeat a good accomplice, I needed something to really concentrate on in order to detach or distract from my tortured breath.

The second practice is short and simple which makes it easy to use wherever I am.  It is a grounding practice and was offered to me by my counselor.  When I find myself starting to panic, I can often counteract the anxiety by focusing on other sensory experiences like this, “locate five red objects in the room around you.”  And then do a visual sweep.  Or, I can do a multisensory grounding, “notice what your feet (bottom, back, etc.) is resting on.  What can you smell?  Can you taste anything?  What are you hearing?  What are three things you see?”  By stopping and getting more granular about my other senses I am pulling the focus off my breath and yanking myself out of the panic I’m feeling.  It’s not just useful for those of us with lung disease, I find it helpful in all kinds of situations that make me feel nervous or stressed, gently bringing me back to my body and the present moment.

Contrary to what I was told would be true, my lungs have made improvements.  I can function for big chunks of time without supplemental oxygen.  These two facts alone are remarkable.  Not taking breathing for granted, I have been able to resume meditation practices that focus on the breath without breaking out in a sweat or having to stop (every time) because of anxiety about my breathing.  I’m grateful for these bellows in our chest that deliver life-giving oxygen to every cell in our body, every moment of every day – without us having to tell them to do it!  Lung disease has certainly shaped my perspective and honed my experience.  What about you?  Do you live with lung disease?  What tips or strategies do you have for coping with a shorter air supply?

It is estimated that chronic lung disease impacts more than 13% of the adult population in the United States.  That’s a serious chunk of us.  Half of those will have COPD, or Chronic Obstructive Pulmonary Disease.  From, mild and barely noticeable, intractable and terminal, COPD is a category of illnesses ranging from asthma and chronic bronchitis, to emphysema.  There are two broad types of lung disease, obstructive and restrictive.  Their names give away a lot about the disease types: obstructive diseases are ones in which the airway is obstructed (in fact, it obstructs the exhale) and, restrictive diseases prevent the lungs from fully inflating (restricting the inhale). 

For me, lung disease came on fast and furious.  In May I noticed that I was having difficulty going up a flight of stairs without being winded, and within six months I needed oxygen, and before a year had passed I was referred for a double lung transplant.  It was harrowing, terrifying, and rapid journey.  My lung disease is restrictive.  I was at risk for it because of the cluster my autoimmune diseases travel in – called antisynthetase syndrome, it is a rare set of diagnoses.  However, the lung disease component is less rare.  It is called pulmonary fibrosis and most people diagnosed with it do not know the disease’s genesis – so, I’m lucky/unlucky.  Unlucky because I have it, lucky because I know WHY I have it.  The disease is progressive and irreversible.  In it, the small alveolar sacs in my lungs, that deliver oxygen to the bloodstream, are turning themselves to scar tissue.  Because of that, I cannot inhale, inflate, and expand my lungs as someone of my height/weight/age would be expected (therefore, restrictive lung disease).  Also, because of the scarring in my lungs, what oxygen I can inhale has a difficult time passing through the scarred and thickened tissue into my blood stream.  So, it’s a double whammy of difficulty: less oxygen and less permeability.

You don’t know how central breathing is to every activity in live until it is made more conscious and difficult.  Everything from walking at a reasonable pace, to talking, laughing, crying, eating, not to mention what we know are big ticket items like exercise or sex, takes more oxygen.  In just several months’ time I went from someone who could breathe and had learned, over a couple of years of illness, to take refuge in my breath, and meditation; to having my breath be a scary experience.  I was now more trapped than ever in the prison of my body.  When I was laying down, at rest – which was most of the time, (remember, I was recovering the ability to stand, walk and roll-over, due to my muscle-wasting disease) I couldn’t catch my breath.  I felt a bit like it did when I was a swimmer trying to swim at a pace that was a bit too fast for me – over-exerting and not getting enough time when my head was out of the water for a full breath of air.  Close to drowning and just getting “sips” of oxygen; never able to scream, cry, yawn, take a deep breath, or even sit in peace and stillness without feeling like I was about to suffocate.

I am not an anxious person, and yet, a new kind of anxiety gripped my waking moments.  Sleep, always elusive in my life, became even more labored as I had difficulty in the quiet and stillness not focusing on the shortness of my breath, the ragged burning in my lungs, the sensation of hunger for air, the fact that my 12 pound dog was taking longer breaths than me.  I asked my doctors for medication to help me sleep, and to help calm my agitated nerves.  I searched for alternatives about where to rest my mind in meditation.  Centuries of meditation practice focus on the inhale and exhale as the way to connect with the present moment.  I’d never experienced anything so terrifying.  My mind couldn’t find a peaceful place.  I turned to TV during my waking hours to try and numb out and escape from the reality of my body.  And yet, I yearned for something more connected. 

Eventually, with compassion, patience, and a lot of practice (trying it and stopping almost immediately) there were two practices that arose and gave me ability to stop the anxious spin, or at least slow it when it would take hold.  One was a meditation practice, the other a grounding exercise.  Struggling to return to the peace I’d once cultivated by taking refuge in the present moment through meditation, I sought a way to connect to my body and the eternal now that wasn’t breath centered.  Looking for another bodily function I could focus on, I learned, with stillness and patience, to attend to my beating heart.  While our heartbeat is a much more subtle cue, and much less easy to control than an inhale and exhale, it became my new beacon, the point around which I was orienting and trying, like a radio frequency, to tune in to.  In some ways, its subtlety is what made it a good accomplice, I needed something to really concentrate on in order to detach or distract from my tortured breath.

The second practice, while shorter, makes it easier to use wherever I am.  It is a grounding practice and was offered to me by my counselor.  When I find myself starting to panic, I can counteract the anxiety by focusing on other sensory experiences like this, “locate five red objects in the room around you.”  And then do a visual sweep.  Or, I can do a multisensory grounding, “notice what your feet (bottom, back, etc.) is resting on.  What can you smell?  Can you taste anything?  What are you hearing?  What are three things you see?”  By stopping and getting more granular with my other senses I am pulling the focus off my breath and yanking myself out of the panic I’m feeling.  It’s not just useful for those of us with lung disease, I find it helpful in all kinds of situations that make me feel nervous or stressed, gently bringing me back to my body and the present moment.

Contrary to what I was told would be true, my lungs have made improvements.  I can function for big chunks of time without supplemental oxygen.  These two facts alone are remarkable.  Not taking breathing for granted, I have been able to resume meditation practices that focus on the breath without breaking out in a sweat or having to stop (every time) because of anxiety about my breathing.  I’m grateful for these bellows in our chest that deliver life-giving oxygen to every cell in our body, every moment of every day – without us having to tell them to do it!  Lung disease has certainly shaped my perspective and honed my experience.  What about you?  Do you live with lung disease?  What tips or strategies do you have for coping with a shorter air supply?

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