On the schedule

Health Update #18

Today is a HAPPY DAY around here!!! The infusions have been scheduled and I go for my first dose on TUESDAY at 10:30am! 🥳

If you think of it at that time, please lift my name in prayer! God has had His hand of protection on me in tremendous ways over the last 7 months, and I know He can heal me if that's His will.

The last 24 hours have been surreal... almost feels like I'm in a dream. We went from nothing and lots of quiet to all of a sudden things started moving again, and moved FAST!

The medicine I'll be taking (ULTOMIRIS) works by inhibiting the C5 protein in the terminal complement cascade, a part of the body's immune system. 🧬

The easiest way I know to explain it this... in an AHUS patient, when a flare up is triggered, your body's complement system becomes completely uncontrolled & unregulated. This is important because the complement system is the part of your immune system and helps control your body's clean-up tasks, such as clearing microbes and broken cells. When that gets discrupted, your body then doesn't function correctly. Your proteins get all disrupted, and cascade issues begin to happen like strokes, cardiac events, seizures, liver necrosis, etc., and in my case high blood pressure & renal failure.

The medicine will help put my complement system back into remission. We don't know how long it will take. For some patients it only takes a few months, for others a couple years, and for a handful, they never recover. I don't take a lot of medicine, and never have, so I tend to respond well when medications are needed. Our prayer is that my body responds positively to this as well.

With the infusions, my bacterial immune response will be inhibited (especially for meningitis), however, my immune response to viruses should remain intact. I'll have to be a little more careful not to get sick, but otherwise should be able to carry on as normal.

I've been told recently that because my body was pretty healthy to start with, that has benefited me greatly in all of this... but I think it was really the Lord's merciful hand of protection and providence.

We are taking a leap of faith, praying big prayers, and trusting the Lord's will for the end result. So, in just a few days, a new part of this adventure begins!

🙏 Specific Prayer Requests:

- Minimial side effects

- Protection against bacterial infections

- My body responds well & full kidney function will return over time

Kimberly