Arghhhh!! The moment when I was starting to feel more energetic and my body was finally getting rid of the side effects from the antibiotics (nausea, bowel issues, etc...), I went to clinic today to discover that my lung function has dropped down to 19%, or FEV1 of .67. Surprise! Not exactly the news I was hoping for.
I knew that the bump from two weeks ago wouldn't last but I didn't think
it would take two weeks to wear off. I was hoping to have at least a
good 6-8 weeks as I'm still on one oral antibiotic (that is clearly doing shit-all). I was so excited to have finally responded to the
medication but that was obviously a bit premature. I did not expect it to drop to the lowest I've ever been without me even noticing. How do I not feel that my lung function is down to 19%? This perplexes me so much.
I knew my lung function had declined some and wasn't awesome as I've been needing a bit more oxygen while walking around and feel short of breath more often, but I really didn't expect it to be as bad as when I had pneumonia. That time, I couldn't make it through the night without coughing, I could barely stand up straight for any period of time and couldn't make it through a shower without sitting down. I definitely feel better than that.
It's so weird to have your body crap out on you when you don't feel symptomatic. I wonder if this is how people with cancer feel when being told they have stage 4 even though they thought they were perfectly healthy in every way. Although for my hypothetical person with cancer, it would probably be way worse as they wouldn't be expecting it at all, at least it's not a complete shock to hear that my lungs are not doing well. The delcine always makes sense in hindsight (so that's why I've been feeling more short of breath when walking to the bus), but it's shocking at the time. I think that just speaks to how well the body can adjust and compensate loses.
After the doctor grimaced for awhile and said a lot of uplifting things such as "your lung function numbers are freaking me out", "I don't know what meds to give you anymore", and "we're stuck between a rock and a hard place," she came up with a plan of action, kind of. I was sent home for two days on some new oral antibiotics and then once my sputum culture report is completed, I'll be admitted to the hospital to start IV antibiotics based on whatever I'm currently growing.
The solution that sounds easy "you were on the one antibiotic and responded well, went off it and crashed, clearly you should go back on it," unfortunately doesn't work if I want to keep my kidney for any length of time (and I do). The side-effects of that medication are pretty strong and can destroy the body. The nausea, vomiting, and diarrhea I experienced are considered 'mild side effects.' They don't like to keep people on it for longer than a month at a time and my month is up.
They also want me to try a new antibiotic in my aerosol mask. However, since it can cause chest constriction, I have to wait to try it while I'm in the hospital as (quoting the doctor) I "don't have much lung function to work with if constricted too much." Again, comforting words from the doctor.
I could really use that transplant about now....every time I hit another bump, I think 'well, this must be it,' and so far it has never been 'it'. Maybe this time? I don't want to get my hopes up to high only to have the crushed once again.