I play a lot of “wanna-bes” in life. In this case, while this may sound like medical advice, it’s anything but. I am a lawyer-wanna-be and a financial-guru-wanna-be for avoiding trouble and homelessness, but I draw the line at being a doctor-wanna-be as their job is still too much “art” and too little firm science. The doctors have great, educated guesses and theories which might help, but at the end of the day we’re working in partnership with them to try and keep our old bodies going as long as we can.
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As I’ve been going through this birth defect journey, first labeled “Asthma” and now labeled “Small Airways Disease” or “Emphysema” or “COPD”, I’ve always been an active participant in my own therapies and care, as no one has a cure for what ails me.
My parents spent thousands of dollars on my physical repairs, and it wasn’t until I put my foot down and stopped all the surgery (as being as good as it was going to get) that I started to stabilize. To the best of my ability to understand what’s going on, I have a bunch of different things showing up in my CT scan:
– Mild bronchial wall thickening (Translation: a radiologic sign which occurs when excess fluid or mucus build up in the small airway passages of the lung, causing localized patches of atelectasis [lung collapse]). However, the report was also clear to state, “No bronchiectasis”. Bronchiectasis is then defined as an “abnormal widening of the bronchi or their branches, causing a risk of infection.” Clear as mud, right? However, other medical texts indicate that some authors consider this term synonymous with “bronchiolitis”. Bronchiolitis is later defined any any form of inflammation of the bronchioles, and the inflammation is usually demonstrated by a widening of the bronchi, and a higher than normal mucus secretion.
– Mild mosaic attenuation of the lung bases suggests inflammatory small airways disease (Translation: it’s a label for a group of infections as well as non-conditions that affect the small airways (i.e., airways that are more peripheral to the main bronchi and proximal bronchioles). It goes on to indicate a hypersensitivity to pneumonitis. Pneumonitis is later defined as an inflammation of the walls of the alveoli in the lungs, usually caused by a virus or inhaling irritating substances. In lay people’s terms – I’m so delicate, that simply inhaling can make me sick. Sheesh !
At the end of the day, though, despite both labels starting with the word “mild”, my doctor has labeled my small airways disease “severe”, as evidenced by my breathing capacity in the 32-33% range (which means that 66% or 2/3rds of my lungs are garbage).
So, why am I telling you all this? Because most of the meds I’ve tried haven’t been worth the risk factors that they cause (up to and including the risk of death), nor worth the very elevated price. Why improve my breathing by 1-2%, maybe even as much as 5-7%, if it means that I lose my vision? Or, that I’m in pain from muscle and bone aches, or that I’m covered in rashes? Never mind when one medicine causes all 3 issues simultaneously.
So, I haunt the internet in my spare time looking for possible treatments or even cures for my disease so that I can get back into step with where I’m supposed to be in the world at age 55 – earning a living, exploring the world to store up memories, and saving for retirement – vs. being home on disability, merely existing, and fighting for disability benefits so that I’m not made homeless due to the very fact that I reside in California.
Some of the more interesting pages I’ve found this week which might be of interest for suffers of lung disease and possible treatment options are:
If you’re on this journey to find relief from what ails you, I hope that you’ve also spent time challenging the status quo on your diagnosis so that you can find alternative therapies that others may not have chosen as of yet to bring to your attention. An active patient, participating in their own health care, is a happier patient who feels more in control of an aggravating, uncontrollable situation.