I wanted to give a general overview of what’s been going on with me health-wise.
I have a lung disease.
It’s been making things hard for me for a while – beginning in June of 2019. That’s when an epic case of Viral Pneumonia hit me hard. We tried a number of things to kick it, and eventually a short run of steroids seemed to do it. But during that Viral Pneumonia my primary care Doctor ordered a CT to check for blood clots in my lungs (my sister had a lot of clots and died of a pulmonary embolism, so it was a fear for me).
The CT didn’t show clots… but it did show damaged lung tissue. Blood work was ordered. A culture of a series of my nasty phlegm nuggets was done. Over the months I’ve had dozens of tests. I had a bout of aspergillus that made it hard to see the underlying cause of things.
The last few months (August through October) have seen a steep downturn. My ability to get oxygen into my body has been really hurt. Without supplemental oxygen I am able to maintain an oxygen saturation of about 87%. I’ve seen it go lower than 79% at times. Normally, the average person is able to maintain 98 or 99 percent oxygen saturation almost all the time. Once you get below 91 or 90 percent your body can’t maintain itself properly; the fall-off is steep.
What began as intermittent exhaustion and strange bouts of breathlessness solidified into constant problem by August. I have worked out almost every day since my heart attack (Feb 2016), but I have not been able to do “normal” workouts since the beginning of August. Basically, I “earn” the same amount of heart-rate elevation and physical exertion just trying to get around the house and walk to my classroom as I used to get doing a full on hour at the gym. This is because I’ve apparently lost 15 or 20 percent of my lung capacity (according to the Pulmonary Function Tests I’ve had). Activities that used to barely register as effort at all are now breath-busters. I’m on oxygen all night long (5 liters pushed through my CPAP) and 30 to 40 percent of the day using my portable oxygen condenser.
I was given an initial diagnosis of Interstitial Lung Disease, which basically has two primary causes – either autoimmune or environmental.
The doctors on my Pulmonary team ordered CT scans that showed them two things: first, the “changes” to my lung tissue are continuing but, second, there seems to be no permanent damage at this point. The main issue with Interstitial Lung Disease is the scarring that can happen. Once lung tissue scars, that’s it; it’s basically permanent. But when the cause is environmental, and if the scarring has not yet taken effect, the situation can be reversed.
My doctors decided that a Bronchial Biopsy was necessary. I had a Lung Lavage during the same procedure (I encourage you to Google what a Lung Lavage entails… the more intense variations are something else). Unfortunately during this biopsy/lavage procedure part of my right lung collapsed. I spent the next 30 hours in the hospital to provide therapy to my lung and make sure that I healed from the collapse and the biopsy.
So what’s next? My doctors will look at the biopsy and lavage analysis to chart a course forward. My condition looks like a cross between Interstitial Lung Disease and Hypersensitivity Pneumonitis. I hope to learn more this week and trust that a course of treatment will manifest.
As it stands now I feel like about 50% of the person I was last semester. Doing everything – sleeping, getting around, parenting, teaching – is hard. I’m thankful for the support around me, good health insurance, good doctors at all levels (especially my Cardiologist and my Primary Care doctor who believed me when I said things were different with this).
I will update here when I know more.
I had no idea, sure you told me, but I wasn’t listening. I feel I have been so selfish in y dealings with you recently. I’m pumping you for drawings while they are dragging the lake for MattS Spirit.
Prey excuse me Matthew. I did not know, I did not listen, I did not want to know you were anything other than visionary. A visionary I might use. I feel like the guy who savagely pitches his forty pieces of silver into the darkness thinking……I’m fucked
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My husband started feeling fatigued and developed a bad sinus infection. He thought he needed a strong antibiotic but was told he had ILD and severe scarring on his lungs He went from 6 -8 hours of oxygen per day to 24 hours. He needed more and more oxygen, developed a terrible cough and ended up in hospital for one month. He did come home and was on 5 liters all day and could not get out of bed. He ended up on 10 liters and passed 3 weeks later. It is a horrible disease. People should read and learn more about Interstitial Lung Disease. It took my husband’s life and left me a widow.
Elizabeth, I’m so sorry that happened. It has been a long road back for me. Thank you for sharing your story❤️