My Living House Episode: Part the First

Let's just skip last the apologies for blog neglect and get straight to the crazy whirlwind that has been my life of late. That whole ER trip I wrote about last time? SparkNotes of the CliffsNotes version, I had to go back that night and was admitted and put on 3 intense IVs for what everyone involved simply thought was a bitch of a sinus infection, got my pain and nausea down to levels manageable with oral meds, and went home to finish two weeks of IVs. Alas, around 10 days into said 14 day IV course, I was feeling only marginally better, and had developed an even stranger and more painful headache which woke me promptly within 10 minutes of 4:00am, throbbing to the beat of my pulse.

Concerned, I had a follow-up CT scan that showed some improvement, enough that my head shouldn't still be hurting quite that badly, and was in the process of setting up another ENT appointment when my CF docs called with my latest bloodwork results. Evidently, being on Tobramycin, Vancomycin, Zosyn IVs and oral prednisone had caused my kidneys to go on strike, and between their frustration with "tele-medicine", my unresolved headaches, and protesting kidneys, my CF team insisted (wisely) that I just throw in the towel and trek up to UNC for admission.

Once I arrive, I go through a battery of tests and see an overwhelming number of doctors (even for me), including 2 ENTs who scope my nose and declare my sinuses, at least the ones accessible by scope, to be "pristine", especially for a CFer. Next up were the neurology docs, who, after another battery of tests, are left with the diagnosis-by-process-of-elimination that I have atypical migraines and decide to start treating me with some long-term maintenance med for people who get migraines all the time. Between meeting with neuro and the time for the med to actually be delivered, however, I was told that they wanted to get an MRI, just to be positive.

Good thing they did. Turns out one of my sphenoid sinuses had become severely infected and developed a mucocele, or accumulation of trapped mucus, that had been doing its thing long enough that it had eroded the bone between my left sphenoid sinus and left carotid artery, leaving the artery exposed and weakened. Needless to say, I was scheduled for surgery immediately. Thankfully, Dr. Senior (a nationally-renowned ENT who does this procedure often, and works with CFers alot, and who is also an awesome and hilarious person) was open to do the surgery that afternoon. I found out what was happening mid-morning Friday, and was in surgery by 3. Once they were "in", they discovered that the infection causing the mucocele was fungal in nature, and removed as much infection as they could, but had to leave well enough alone when it came to that poor beat-up artery, lest it breakdown and start spurting uncontrollably. Thankfully, everything went as well as could be hoped, exceptionally considering the risks, but that artery is still in need of some help that the ENT folks simply couldn't give.

Unfortunately, so are my kidneys, and the next step for my poor mutilated artery is determined by my kidneys deciding to get their act together. When I was admitted, my creatinine levels were around 1.9 - they should be closer to 0.6-0.7. They had come back down to about 1.3, still not great, but trending in the right direction. What with my new antifungal IV meds and my general reluctance to well, drink anything yesterday, it's creeping back up. That next step I mentioned will be a carotid angiogram, which involves contrast dye, which could cause my protesting kidneys to straight up walk off the job, metaphorically speaking.

So. It's all a bunch of wait-and-see-and-try-to-ignore-that-a-major-artery-in-my-brain-is-crapping-out-in-the-meantime. On the bright side, everyone involved has been absolutely wonderful and have communicated and deferred to each other in ways that are seemingly unheardof in medicineland. I also just moved back up to the "normal" floor from the ICU, which is a relief, even if just psychologically. And mom just showed up with Panera, so life's not all bad. Just full of lots of pee measuring and gatorade. More to come, prayers appreciated in the meantime...