My Emphysema Journey

I began this journey nine years ago at 72 when I was in the hospital for a compression fracture of T12. Obviously, I had emphysema long before then without knowing.

The start of my journey

The doctor set me on my journey with oxygen at night, a daily inhaler, and a stint at pulmonary rehab. I worked hard to eat healthy, exercise, and learn all I could about living with emphysema.

With my Inogen G4, I managed to live a relatively normal, active life up until a year ago. I started needing more oxygen when walking or exercising, so I graduated to the heavier G5. But shortness of breath became a familiar symptom unless I was at rest. In addition, I couldn't maintain my O2 saturation in the 90’s without connection to a concentrator. This was a definite change that caused me some concern.

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Exacerbation or decline?

I wondered if this was the beginning of an exacerbation or just the natural progression of my disease. I worried and I waited. The next available appointment with my doctor was months away, so I sent him a message to give my data. His said I should go to the ER or an urgent care if I was concerned. Well, that didn’t answer my question.

Instead, I caught a mild case of CORONAVIRUS 19 after four years of successfully avoiding it. It was just a bad cold, but ever since then my emphysema symptoms have gotten worse.

Last year the test showed I needed 4 liters when walking and 2-3 when at rest. Now I get short of breath walking with 5 liters and my saturation drops into the low 80’s and sometimes into the 70’s.

Life changes

I started sending out my laundry a couple of weeks ago, and my cleaning lady now changes the sheets on my bed. And I have become a total couch potato. Even taking my daily shower is a long process as I must stop and catch my breath. Next I will have to wear my oxygen as I shower less often.

I’m still plagued by the question: is this the natural progression or am I working toward an exacerbation? It probably doesn't matter other than is this the new normal? Will I ever be able to go for my walks without SOB?

I wonder, should I go back to continuous flow tanks rather than the pulse feed G5? Should I just ride my mobility scooter more often? Should I just stay connected even through a dinner out with friends?

I have been so fortunate these past nine years, so perhaps I just need to adapt to this new progression.

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