Overall, I am doing better than I think anyone expected me to be doing so far. I have 2 moxe treatments under my belt. My creatinine is holding at around 0.85. Everything else is looking pretty good in my labs.
I feel like I am walking a fine, blurry, and shifting line on what I need to be doing on activity level and fluids.
The biggest challenge is striking the balance between being inactive enough I do not trigger HUS, and kidney issues, but not being so inactive that I develop a blood clot. Thanks to Netflix and Hulu, and several good books, the time lying in a hospital bed is going by faster than I would have thought.
My doctor has recommended to not stand for more than 15-30 minutes at a time. I can also only sit up for no more than 4 hours at a time. I have to lie prone to make sure sufficient blood is going to my heart. My daily labs this cycle have doubled and they are proactively checking to ensure there are no issues with my kidneys, or blood clots.
My blood pressure has been low again, so my fluid intact has been increased. We are still struggling to find that just right amount. We started out this cycle at 6L / day and now are at 7-9L / day.
I've had a few people ask if this will be the last cycle of treatment. I won't know until end of next week. If I make it through this cycle without developing Stage 3 HUS I will likely come back for a 6th cycle. Right now I am focused on getting through the next few days for an on time departure home on Thursday.