I've been getting hassled to write an update here, and as much as I've wanted to, it's been nearly impossible for me to sit and stare at a computer screen for long enough. Let alone try to condense the swarm of thoughts buzzing around my brain into a concise block of writing.
But here I go, doing my best...
A lot has happened over the past couple of weeks, including one day of multiple mistakes by a nurse that left me bawling -— maybe that's an understatement; let's go with "wailing" — as well as prompted my parents and best friend to call a come-to-Jesus meeting involving high level hospital staff from many departments.
During my complete and utter breakdown on the hospital bed after learning I had been given two hours of the wrong IV bag, I decided I had to take control of the situation, rather than fall completely apart. I broke out my computer and typed up a line-by-line instruction sheet for my daily care, from timing to dosing, that left no room for the incessant daily questions, or for any mistakes. That sheet was printed out and passed around to every nurse assigned to administer my treatments.
Since then, my care itself has gone off mostly without a hitch.
My body, however, has been taking quite the beating. It would appear the drugs being pumped into my system each day are trying to kill me, along with my disease.
I am now getting 750 mL of IV saline both before and after each administration of Amphotericin (that's 3 hours of daily hydration), which seems to be curbing the alarming decline in my kidney function.
Worse than my plummeting kidney scores — at least relative to what I am able to actually feel — is that I have become constantly nauseous, and forever fatigued. I can't sit up, stand up, walk, or change position without getting dizzy. I'm really not able to do much at the hospital or at home beyond lying horizontal.
My infectious disease specialist had already brought my Flucytosine Rx down from 5 pills every six hours to 5 pills every 12 hours due to the kidney issues. As of yesterday, she allowed me to discontinue them entirely, in hopes of curbing some of the awful side effects that now besiege me 24/7.
At this point, I am having to regularly take anti-nausea pills at home, as well as receive the same medication in a stronger dose through my IV line almost as soon as I arrive at the hospital each day.
My magnesium levels also keep dropping, and have stopped responding to the slow-mag pills the doctors were dispensing, which may be what has brought on the recent return of my raging headaches.
Worst (and scariest) of all, my hemoglobin and hematocrit blood counts have been on a rapid decline each day over the past week. With eight days left of infusions, the question at this point is whether I will receive a blood transfusion.
My counts are so low that they would normally have transfused days ago, but there is some debate between my physicians, nurses, family, friends, and myself as to how to proceed. I will visit my primary care doctor in his office tomorrow morning before heading to the hospital, and hope a final decision will be made at that time.
The good/bad news in my latest round of progress testing is as follows:
GOOD... The cryptococcal antigens no longer appear in my bloodstream — which, as I understand it, means either the infection is now completely inactive, or is confined entirely to my brain.
BAD... My most recent MRI indicates the brain lesions have not changed since the previous MRI (before treatment began). I'll have another MRI in a month, with a new approach that will look for calcification on the lesions, which would indicate they are no longer active but are instead becoming permanent scars.
Another main update I guess would be my stars. I started seeing a LOT of them over the past few weeks, and so they hooked up a bunch of electrodes to my skull and strapped me down with a brain wave recorder and battery pack for 24-hours to look for seizure activity. I don't know the results yet.
I also saw a neurological ophthalmologist today, to be sure there was no retinal damage brought on by my condition that could be causing the "visual hallucinations."
The doctor found that my vitreous (basically, the jelly in my eyeballs) has coagulated due to the major health changes, constant dehydration and rehydration, etc. She compared the process to a grape wrinkling. It's apparently not a big problem unless the activity causes the vitreous to tear away at my retina. The doctor gave me some symptoms to watch for that would prompt me to come back immediately, and otherwise I'll go back in a month to have her check the status.
I'll need to come up with a nickname for this newest doctor added to my arsenal. So far, my "entourage" as I like to call them, are known among my family as follows:
Primary Care Physician: Dr. Dad-Jokes
Infectious Disease Specialist: Dr. Good-Hair
Neurologist: Dr. Fabulous
Well, this has been about as much as I can handle of being on the laptop. I do try to post brief updates on Facebook and Twitter, which are a bit more tolerable to my eyes/brain/stomach, thanks to their small-bursts nature.
I finally have just over a week to go of "short stay" hospital visits (not that I consider eight hours a day "short"). Thanks everyone for praying, visiting, sending notes, gifts and cards, and most of all, for caring...
Love,
-Molly