By Rachel Doboga
Photo by Tyler Quiring on Unsplash
Alright, here’s the scoop. In early March, we knew one bacteria had colonized my lungs, meaning it will never go away. We just have to manage it with hour-long nebulizer / breathing treatment sessions in the morning and evening, and I have to do regular tests. We also knew that a second bacteria was present.
The secondary infection worked very fast and by the morning of Monday, March 6th, I was coughing up blood. My first thought was, “I don’t want to marry Edgar Allan Poe!” His wife died of tuberculosis, and so did his mother. Talk about trauma! Did I mention I was an English teacher before ALS? I digress.
I got my bactrim fast and my awesome primary provider at the ALS clinic fought insurance to get my tobramycin. Slowly, blood clots replaced the fresh blood. I don’t understand why, but at the height of my illness I experienced paranoia and severe nightmares. I even hallucinated there was a tarantula on my stomach, but just as I was about to hit my alarm, it jumped down and skittered away. Evan very patiently explained again and again that the Pacific Northwest doesn’t have tarantulas, but I still am not sure… At any rate, my mind eventually cleared, though I am still recovering.
My pulmonologist is doing an in-home chest x-ray since I am bedbound (very cool!), a blood test, and I already had a sputum test. Sputum is the gunk I cough up, gunk being the scientific term. I was on bactrim and tobramycin for two weeks, and now I take tobramycin every other month preventatively to manage the bacteria that have colonized my lungs. Unfortunately, the second bacteria colonized my lungs as well, but I’m trying to stay positive and remember I’m in good hands!
And you won’t believe this, but those good hands at Pulmonary Critical Care just told me my sputum test came back completely clean – no colonization whatsoever! We’re still doing the nebulizer treatments and the tobramycin, as well as the chest x-ray just to be safe, but I don’t mind. I’m just ecstatic the bacteria are gone for the first time since October! Rejoice with me!
- I can’t post comments or reply to them, but I can read them and I love them. Keep writing!
If you have fond memories of Rachel as a teacher in her life before ALS, or if a post on this blog has ever moved you, please consider making a contribution to Rachel’s out of pocket caregiving fees, medical expenses not covered by insurance, and transportation costs through Friends of Rachel. From your PayPal account you can donate to FriendsofRachelDoboga@gmail.com