My Illness: Check-up at NJH
This post is the 12th in a series on my Necrotising Aspergillus Pneumonia illness. Where have I been? On a journey, to say the very least. If you’d like to start from the beginning, start here.
As you can see from above, I had quite the busy day – as is the norm when I go there. What you don’t see in the image, is that I had another lab test on my way out the door, which was after 4pm!
The lab tests were only two tubes in the morning and one in the afternoon. Woo hoo – only three for the day!
We went over the CT Scan of my chest with my Infectious Disease doctor. He said that where there were changes, they were miniscule this time. There is an area in my lungs that had a bunch of holes – almost like honeycombs. That area is now closing up with scar tissue. He said that this is a good thing, because when it’s closed, bad things can’t get inside them to cause infection. He noticed a new issue on the CT. It’s a small, hazy area. When he listened to my lungs, he could hear it in that particular area of my right lower lobe. That’s where I had the most damage. He didn’t seem particularly concerned and said that if it’s a fungus, they’re slow-growing and we will check back at a follow-up CT Scan in three months or so. I remembered to ask him why he had decided to get me off my meds after a year, instead of when there were no more changes in my CT Scans like he had originally said. He said that his reasoning was because of the toxic neuropathy in my feet. He was hoping that by taking me off of them, that it would help the condition. As I’ve mentioned before, since there is no precedence on how long to keep a patient with a healthy immune system on antifungals, he decided it was best to take me off of them to see if it would help with the neuropathy symptoms. As it turns out, unfortunately it has not. He doesn’t think that it will get any better at this point. Granted, the symptoms are not as bad as they were in the beginning. At that time, it had went 1/2 way up to my knees, and my ankles were giving out when walking. Now it’s only in my feet. And my symptoms are only tingling and numbness. Thankfully I don’t have the pain that is sometimes associated with neuropathy.
The PFT test was something new to me. When I see my local Allergist/Immunologist, I have PFT tests. At least that was what I thought. It turns out that I was only having Spirometry Testing. A PFT test is done in a clear booth. I get claustrophobic. As it turned out the tests weren’t too bad. It was several different types of breathing tests, including a nebulizer treatment. As long as she kept talking to me I was fine for the most part. When someone popped their head in the room to have a few words with her, I ended up knocking on the wall motioning to her to open it up. She had forgotten to show me where the emergency release was! I’m also not overly fond of having clips on my nose. When the machine stopped the air coming in, I would get panicky.
When I went to the appointment with my Pulmonologist, we went over the CT Scan again. He compared it to the one that I had in July and the one that I had in January. He seems to think that the reason for the haze could be because of my illness in April. He said that my next follow-up CT would be before the end of the year. He’ll decide the time frame with my infectious Disease doc. He wants to hear back from me sooner if I start to get a cough that won’t go away.
The last appointment that I’m going to talk about was the Resp Care Sputum Induction. That’s just all sorts of fun right there! I said good luck to the therapist. He said that they had their ways. I ended up having a regular nebulizer treatment first, then he added salt to it (supposedly lungs reject salt and that causes mucus). He ended up adding more salt the third time and then we tried it a fourth. I produced less than a pencil erasers size. He said that it just might work. I didn’t see how. He said it’s microscopic. Hmmm… Too bad he didn’t try to get more out of me over the next few days, because I had a delayed response! Hahaha!
Well, they may not be concerned about the hazy area (at least not outright), but I sure am – not enough to drive me crazy – but who wouldn’t be? As usual, I will update you when I know more!