Even with supplemental oxygen I was having trouble breathing. Things
finally stabilized once we bumped me up to 4 liters of supplemental oxygen, but
even with that my oxygen saturation was still a bit low. I was also REALLY
struggling with “tightness,” which is how I describe the feeling in my chest when
airways are inflamed and irritated. The tightness was so bad that it prevented
me from taking deep breaths and clearing out the congestion, instead leaving me
with a dry hacking cough. I was also struggling with significant stomach
issues, and all the coughing didn’t exactly help with nausea. All in all I was
not living my best life.
After a few days with no progress, the doctors decided to try adding
another antibiotic called Amikacin. Amikacin is in the same family as
Tobramycin, and also has a risk of hearing loss, but less of a risk than
Tobramycin. They also decided to start waking me for nebulizers every 4 hours to
prevent me from losing ground overnight. So for the last few days I’ve been
even more sleep deprived than usual in addition to all the stomach and
respiratory symptoms. I’ve pretty much been sleeping most of the day and
feeling pretty gross during my few waking hours.
Yesterday we finally saw a small amount of progress. Various
medications finally kicked in and started getting the stomach issues under
control. I was also able to lower the supplemental oxygen for the first time,
and maintained decent oxygen saturation even with only 2 liters of supplemental
oxygen. Unfortunately, my chest is still really tight and I’m still not moving
air well. They’re going to try increasing the dose of Amikacin, but if there
isn’t real improvement within the next few days we’ll have to move on to
Tobramycin instead.
This has been my worst CF exacerbation in a very long time. Hopefully
things will start to turn around soon.
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