Contributed by Bob Rawlins, oxygen user and consultant to CAIRE Inc. ~
Idiopathic pulmonary fibrosis (IPF) is the prototype of interstitial lung diseases (ILDs), a group of pulmonary diseases also referred to as “rare lung diseases.”
Now, that is a mouthful, right?
What is rare? By definition in the medical and healthcare world, a rare disease tends to affect less than 10,000 people in a general population. Geographical areas or environments are obviously more difficult to define, hence, idiopathic.
When I was first in the hospital of my eight-week stay, my wife and friends laugh now about how every day they went into the hospital to visit they had a different acronym for what they had me diagnosed as. This was after I had survived the dreaded Acute Respiratory Distress Syndrome (ARDS).
COPD, PF, CF, Double Pneumonia, Pulmonary Hypertension, Idiopathic Viral Infection, Infectious Disease … and you get the point … Umbrella is idiopathic.
I finally decided to go with the doctor that said, “we have little idea what caused your lung disease, other than to say, it’s not Chronic Obstructive Pulmonary Disease (COPD). “All 41+ infectious disease tests came back negative, therefore we label the unknown as idiopathic.” “Great,” I say. “Now what?”
So, the next seven weeks continued until I could be released with oxygen therapy and strict recovery plan.
And almost three years in and I’m still on a recovery plan with IPF that doctors still don’t know what was the origin of the disease.
So, now the tests continue every three months to make sure or find out if the scarring is progressing.
So new symbols come into play. TLC, IRV, FVC, FEV, and so on.
There are others, but have been told these help the anxiety of not knowing or knowing what shape your lungs are in.
Total Lung Capacity (TLC) at maximum inflation. Percentage usually.
Inspiratory Reserve (IRV) max volume inhaled from the end inspiratory level. So, your reserve and your ability to recover during some endurance.
Forced Vital Capacity (FVC) intake.
Forced Expiratory Volume (FEV) outtake.
Important to note as these tests are preformed to graph progress or decline.
Determine proper recovery routines and oxygen therapy if needed.
It was interesting to me that some of the COPD patients I did pulmonary therapy with and still do, don’t always need oxygen therapy all the time and mostly when working out to keep their levels safe.
Now, everyone is different, but it was so not me. I’m on oxygen therapy 24/7, sometimes when I’m resting or just watching the TV I can go without. (I call this my back to normal moments) J! A win! Count it!
There are of course tons of other abbreviations that you can find and discuss with your doctors about on your health chart. It’s a good idea, it helped me with peace of mind – that not knowing anxiety thing … really.
I would not recommend getting too bogged down in it, but it helps me get prepared and ready for those tests and hoping to improve them or at the least stay even with them.
And that’s another thing I had to get used to. “Stable is good.” Really?
I always wanted to improve in most things or find ways to better a process almost at the point of obnoxious nausea. But, I have since learned to try and be happy with that “Stable is Good” phrase.
However, life is good! Tell yourself that every day!
Till next time.
Breathe-easy my friends.
– Coach Bob
Bob Rawlins, 61, of Medina, Ohio, is husband to Terese and father to their 13-year-old triplets, a soccer coach, a hospital volunteer, and marketing guru. He enjoys skiing and golfing with his SeQual eQuinox portable oxygen concentrator.
If you have been prescribed oxygen therapy, learn more about CAIRE wearable, portable and stationary oxygen concentrators by visiting www.cairemedical.com or calling 1-877-704-0878 to talk to an oxygen advisor.
When using any oxygen therapy device please consult the applicable product instructions for use for product indications, contraindications, warnings, precautions, and detailed safety information.
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