one day at a time . . .

Bronchoscopy Results

So I had my bronch on Thursday and it’s not what I had anticipated. Pneumonia with thick mucus in both lungs! Really! After over 6 weeks of IV?

Plan: Stay on Zosyn until cultures come back. That could take 3 to 4 days!

This result upset me deeply. I became very emotional. I’ve heard of pseudomonas taking over and ending in death. I just assumed that would be me. When I got home I emailed my transplant dr explaining I was scared and if I was over reactung. I then cried myself to sleep.I later emailed my CF doc and explained what was going on. Her response calmed me down and gave me hope again:

Don’t worry. This happens sometimes. It’s from your immune system being suppressed and the Pseudomonas. The meds will work. I see that your organism is sensitive to polymyxin. Have you ever had that? It is sensitive to some other antibiotics as well.

There is also a new antibiotic out for Pseudomonas called Zerbaxa. I can’t see that they tested for it. Do you want to mention it to Dr. Shah or would you like for me to mention that we corresponded.

Please try not to worry. In the big scheme of things, this is really a manageable situation.  Are you taking nebulized antibiotics at home (TOBI, Cayston, Colistin, inhaled ceftaz) are some of the options. “

I shared these ides with my transplant dr and as it turned out she has discussed my case with Infectious Disease and they recommended adding Zerbaxa to the testing as well.

So I wait until it’s figured out!

It’s 3:30am on the 10th and I woke up with a temp of 100.2… UGH – why on a weekend!

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