How Do You Know?

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As I’m on a journey to understand my Asthma / COPD (and whatever label they want to apply today), I’m often asked to explain my understanding of my disease.

Since the diagnosis was applied in childhood, 55 years ago following my first pectus excavatum (chest surgery to break my ribs and realign them to keep them from piercing my heart and lungs), it’s anybody’s guess as to how I got where I am today.

Unless the person I’m talking to is a medical professional assigned to my care, I tend to gloss over what happened to get me where I am today, as I just don’t want an endless list of “how do you know” questions.  This is my life, and I’m not simply studying for a test by random strangers.

So, the best thing to do to aggravate me is to presume that I’m not involved in my own therapeutic options.

Nothing is guaranteed to make me see red faster than the presumption that I’m a hypochondriac because I’m interested in my care options outside of what the doctor specifically recommends.

Because of my attendance at a “Better Breathers Club”, initiated by my own volition, I learned about chair exercises (with paper plates under my shoes to reduce friction) and it was very helpful in January when it was pouring and I felt too crappy (conjested) to get out and do the exercises that are recommended to be part of my daily routine.  (Pix credit:  Santa Clara Valley Better Breather’s Club facebook page – January 11, 2016).

 

Today’s class was also interesting, as we talked about the link between heart attacks and COPD, as well as how to deal with early morning congestion upon awakening.

These events are sponsored by the American Lung Association, usually run by volunteers at one’s local hospital, and run by a combination of nurses and respiratory therapy specialists.

I’m a big fan of different sources of information.  Of comparing what works, what doesn’t, and what might be possible to try, vs. simply doing what my lone doctor recommends.

That’s not a slam against any one doctor, but more of a belief that variety and fresh voices leads to the best quality of life and healthy alternatives as our understanding of best practices evolves.  These others are voices and sources of information that I might not otherwise have thought about due to lack of context and exposure to the topic as it relates to me and my experience existing in this refurbished old chassis.

I tell you all that to tell you this, though.  I am spending most damp mornings getting up, exhausted, but too tired to keep lying down and struggling to breathe.  Once I cough up a lung for the next hour to three, I begin to feel better (if still tired) because I am getting more air into my lungs.

As with the illustration below, my understanding is that the mucus builds up in the bottom of my lungs overnight.  Upon rising and moving around, sputum is produced as my lungs slowly empty out due to my once again being upright and moving to break up the congestion.

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In today’s discussion with Sandy and Gail, the nurses hosting the gathering, the question was asked about how I knew I had asthma / COPD.  Frankly, I don’t.

Because my breathing issues are an offshoot of deformed ribs, which lead to crowding my lungs and multiple incidents of colds and pneumonia, the all-purpose label (and treatments) have been asthma-specific because that’s how they labeled my breathing challenges in 1961, and they’ve never found a more applicable label.

The label isn’t particularly scientific (as it was decided before genetic testing), but it’s good enough to prescribe a course of treatment that works, and give me the quality of life I currently enjoy.

However, during today’s meeting we were discussing congestion and wondering whether or not a pulmonary percussive vest would help me feel better faster, and keep my chest cleared longer.

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While I had heard of manual thumping of the chests of people who have cystic fibrosis or lupus, and wondered if it would help on bad days when I couldn’t get ahead of the conjestion, I never knew there was a machine that might help them, nor that it might work for COPD relief, too.

So, my nosiness comes up with another non-drug symptom reliever, and now I start the, “What do you think?” conversation with my pulmonologist as it comes with a weighty $15,900 price tag, and a prescription is required in order to be allowed to purchase one – with or without insurance.

Anyone else reading this have experience with percussive vests for COPD congestion alleviation?

 

 

 

 

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