Why I Created an IPF Dictionary After My Diagnosis
Dictionaries play many roles in our lives. In early childhood, we use a dictionary to associate pictures with words. In early education, we learn to use a dictionary to define unfamiliar words and look for alternative meanings. In the computer age, we create spreadsheets with data dictionaries. Dictionaries fill in the blanks in our knowledge of language.
My first IPF dictionary
With a bachelor’s degree in criminology, a minor in behavioral science, and a master’s in business administration, I’ve always felt like I have a good command of the English language. But I didn’t start building my first IPF dictionary until the morning of Jan. 31, 2017, when I was diagnosed with idiopathic pulmonary fibrosis.
I understood each of the words separately. I understood that idiopathic meant unknown. I understood that pulmonary dealt with the lungs and respiratory system. I also understood that fibrosis meant thickening or scarring.
That morning, I learned that together, those three words referred to a chronic, progressive lung disease of unknown origin characterized by scarring of the lungs and that currently has no cure.
Words took on new meanings
When familiar words were combined with one another, they became unfamiliar terms. For that reason, I began building my own dictionary.
My care team always ensured that I understood every part of my diagnosis, and empowered me to ask questions to clarify any doubts, test results, or procedures I had. But medical chart entries tend to be written in a language only pulmonary fellows can understand. I wanted to understand that language, too, so that I could fill in the blanks when I heard or read new terms.
Childhood songs to adult primers
“Your foot bone connected to your heel bone/ Your heel bone connected to your ankle bone.”
Do you recall that song from days gone by, recorded in 1950 by the Delta Rhythm Boys? It has introduced many young children to anatomy.
Planting an earworm is not my intention. Rather, the song illustrates the importance of understanding my disease and the parts of my body it affects.
I wanted to better understand my lungs, so as I began building my dictionary, I included the correct names and definitions of each part of my lungs. I hoped to situate the medical names within a frame of reference I understood. For example, when I heard the word alveoli, I wanted my mind to immediately translate that into “the tiny air sacs at the end of the bronchioles.”
Knowing is understanding
Building a dictionary is not an attempt to earn a medical degree. Whether you’re a patient or a caregiver, it is an opportunity to be a better partner to your care team. Understanding basic terms will also help you ask better questions.
Most pulmonary fibrosis patients have received a variety of injections during their journey. Two common types are intramuscular and subcutaneous. When I think about intramuscular injections, such as flu shots, I remember that I usually receive them in my upper arm. Subcutaneous injections, such as blood thinners, are often administered in the belly area. This helps me remember the difference.
Building your dictionary
You can start by looking at known resources, and you don’t have to go far. Pulmonary Fibrosis News has a search function that allows you to search for specific terms.
Look for reliable, properly sourced articles that explain the terms you want to learn more about. For example, searching for terms related to pulmonary function tests might take you to an article about lung function, which can result in a better understanding of forced vital capacity.
The Pulmonary Fibrosis Foundation has a glossary of PF-related terms and procedures. The National Institutes of Health website has a robust search feature.
Remember, you are your own best advocate. Building your IPF dictionary helps ensure that you can better advocate for yourself. It’s how you can promise to make every breath count.
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.