My Illness: It’s a New Year and I can see the light at the end of the tunnel – I think.
This post is the tenth 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.
Yes, this is a brand new year and I’m still working through this – but much, much better!
The chest CT scans at National Jewish was one thing that I forgot to expand on in a previous post. It explains why that institution is so particular about their testing. When told that I needed this test or that, I’d ask if I could have it done locally so that I wouldn’t have to make the drive to Denver. The answer was usually no, that they did things a little different (better) and that if I’d gotten some tests done locally, it wouldn’t be with the same results. Back to the CT scan for instance. Locally, they would have just had me lay on my back. At National Jewish, they had me lay on my back, on my front, and did several rounds alternating holding my breath with my lungs full of air, and with my lungs empty.
I met with the Infecious Disease doctor first. He said that there wasn’t really a precedence as to how long a person with a healthy immune system should be medicated. He wanted me to make it at least a full year (meaning 3 more months), but he would join me in my Pulmonologists appointment after lunch. There we would make a game plan together.
During lunch I called the pharmacy to ask them to investigate the availability of my medicine. The answer was 32 bottles. Scary! That’s nationwide! I use 4 bottles a month. I told them that after my last doctor’s appointment I would know for sure if I needed them to get a supply for me.
The Pulmonologist said that my left lung looks much better. My right one showed marked improvement. When he listened to me with his stethoscope, he couldn’t hear much air going into the right side compared to the left. The right side is where most of the damage is. He told me that the Infectious Disease doc stopped by and spoke to him during lunch about me. They decided that I would stay on the medicine to make it a year total. They want me back for another chest CT in June, which will be about 2 months after I’m off the medicine. I will also have appointments with both of them to discuss the results.
The first thing that I did when I walked out of the exam room was call the pharmacy. I asked them to order enough to get me by – enough so that I wouldn’t run into an ordering problem on this last leg (8 more bottles since they already had 4 waiting there for me).
I’m feeling much better, and as people point out, at least I’m vertical. I still have neuropathy, but it’s 50% better. It’s not above my ankles any longer, so this new medicine must have helped with that. I’m praying it goes away completely when I’m done with my medicine. I’ve been told that if it’s going to get better, it could take several months to see improvement. One of the doctors had also mentioned that I will produce much more mucus/phlegm for the rest of my life from the damage.
Unless something drastically happens before then, my next post will be in June or July after my appointment. Thank you for keeping up!
Update: Visit here.