Welcome back friends!

Health Update #30

Hi y'all! Several friends have sweetly reminded me that it's been a while since I've done an aHUS / kidney update... so here goes!

The last 6 weeks have been wonderful with very little nausea/vomiting! Praise the Lord! 🙌 I am able to have 1-2 small meals a day. I have felt "good" (that's relative, I guess), and I seized the moments of energy... but might have overdone it a little bit and required a few naps & recovery days 😅 - still lose energy super quick.

I met with the blood doctor at the cancer center several weeks ago. My creatinine had come down to 8.9 (even though my kidneys have sustained quite a hit, he was happy that was still trending down). The rest of my labwork was normal. I gained 4 pounds, which he was thrilled for, but told me not to go wild since I've been keeping a little more food down these days.

The next week, I met with the kidney doctor. He was happy that my hemoglobin has stabilized - staying around 10-11. That means my body is producing & maintaining blood faster than my aHUS can kill it off - another answer to prayer! He still wants me to get a transplant. He did agree to meet me in the middle and let me get away with a standing appointment at the clinic (in case I get worse and we need to expedite).

I prayed the Lord would put up a roadblock if it wasn't the right decision, and He did just that... let's just say it was a huge one. 🛑 Hubby was amused and told me to be a little more specific next time I ask God for a road block. 😁

Transplant is a precarious thing for me. There are no good options for me. While it would help with the kidney failure, it will 100% trigger the disease again. The major concern is that I won't survive another flare. We don't have peace about it, so we are trying to hold off as long as possible (despite pressure from the nephrologist.)

💉 About 10 days ago, I had my Ultimiris infusion. I tolerated that well - was super tired for a few days & a little queasy. Otherwise, that continues to go well.

Overall, not a whole lot of change - I'm stable and hanging in there. 💁‍♀️

🧬 The kids had their genetic testing. After a long wait, we got word that the lab messed up on their test, and we will have to redo it. So, it will be a few more months before we know if they have the same genetic defect that I do. There's a reason the Lord allowed that, so we are trusting His plan.

God has been SO GOOD to me - faithful & merciful. I am grateful for every prayer that you have prayed - God bent His ear because of you and has had a hand of protection on me.

Getting sick was a gift. I know that sounds weird, but it's true. It has totally changed my life and perspective on a lot. I look at life through a totally different lens now. Life has become more slow, and I live more present in the moment.

I have also learned what it means to TRUST God and to be completely & wholly dependent on Him. When you truly learn to rely totally on God for every moment and every breath... THAT is a beautiful thing to experience.❤️

In Christ,

Kimberly