Symptom Symphony

This past month has been trying for me.

On the heels of hearing about my  mysterious sputum bug, "Ochrobactrum Antrhopi", I visited clinic to find that my lung function was down, weight was up, bloodwork was off (wbc 13). Doctor suggested we do nothing for 2 weeks to see if it was merely a bad day. I frequently have clinics where things are *a bit* down but I feel perfectly fine, and this was no exception. The number drop was a bit more severe than I'm used to, but it didnt seem to phase my doc.

Two weeks later, I come back to clinic expecting improvement despite changing nothing in the prior two week period. Wrong. Same situation to the detail. This time I saw a different doctor, and we decided that oral antibiotics were in order since in the past they have worked well and thus we would avoid the need for ivs (which I have not had in over 2 years).

My first 2-3 days on the two drugs was utterly shocking in the effectiveness I felt. I'm used to orals helping, but this was a complete whoosh of energy and ... how can I explain... muscle loosening that I can only compare to how I've felt once or twice on iv drugs (circa 2005/2007). My body exudes clues that drugs are doing their best work. My tongue changes from gray/green/yellow to perfect pink, and the other key clue is sadly a huge disruption in my bowels... but normally its all par for the course. I really wish I could put words to the relief of good antibiotics. Even at my low lung function I laid in bed those first few nights raving (and honestly I could almost cry) at how relaxed my body felt. I lounged in the strangest positions on the bed like a 12 year old watching tv. Because I could. Its amazing the tension that we live with in our bodies with CF. All involuntary protection of our brittle sick little lungs.

Unfortunately, that Friday I began to feel off.. but not in a strong enough way to know immediately that it was a cold. Antibiotics, as far as I know, mess with your  nutrient status for a few reasons. The bowel disruption is one of them, and therefore immunity decreases. On top of this, when I'm trying to handle my normal routine and add in two twice-a-day meds which ideally are taken hours away from multivitamins and milk (for best performance), I tend to let some things go by the wayside (like careful frequent handwashing). needless to say, I caught this cold, and then seemingly got over it in a couple days.

Since then, its been day after day of new symptoms. One day I'll be short of breath, the next day I'll have a headache and acid reflux. Virtually everyday I have painful gas at night and have had a couple nights with only 2 or 3 hours of sleep because of this. I try and eat yogurt, and probiotics, but its really hard to keep up with it all. I'm finding my physio is lacking, I haven't done Cayston in a couple days, etc etc.

now I have just 4 days till clinic to try and get back to how I felt at my peak and although I was soldier'ing on determinedly for awhile, I'm doubting thats possible at this point.

All this to say that I see now that there is a limit to what a person can do and handle. I know there's so much worse that has happened to friends at my lung function, and I realize that the doctors really are right when they say that there comes a point where transplant is the easy choice because of this whole mess.