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My stronghold & refuge
Update #26
Happy Saturday Friends!
It's been a little bit since I shared an update, so I thought I would do one here on the blog!
About 4 weeks ago I had my appointment with the Kidney doctor. That appt went well, however my creatinine had slightly increased from 10.1 to 10.5. Dr. Hubby says that was within the "margin of error" so he didn't seem too worried about it. Our research has turned up variable answers about remission, so I asked the kidney doctor for clarification about what that would look like for me. He couldn't give me a solid answer; only saying that the standard was variable and that the inusions I am on should be keeping me from having flares. No changes were made to my care plan at that appointment.
Not having answers can get frustrating from time-to-time, but it's also helping me lean on my faith even more and trust the Lord's plan in all of this. So we continued on. I had a poetin shot the day before Thanksgiving. Thanksgiving was great and low-key. I got to enjoy the meal, but did end up getting sick later that day. It was disappointing, but also another glimpse of grace that I was able to enjoy most of the day.
This week, on Wednesday, I had my hematology appt at the cancer center. I got no clear answers on remission - again. It's kind of defeating, but I do understand the reasoning. The doctor said that aHUS is so ultra-rare, individualized, and nuanced that there is no clearly defined answer for what constitutes remission... There's just not enough of us to study and determine. However, he did say our main goal for this moment is to keep me off of dialysis, and we are meeting that benchmark for the time being.
My creatinine came down from 10.5 to 9.8. That is a small improvement, we will take it! Praise the Lord for it!
My hemoglobin was still low at 8.4, meaning my body is still killing off & not replenishing my red blood cells fast enough. I go for my next poetin shot the week of Christmas, so hopefully that will improve.
My kidneys are still "estimated" to be functioning around 5%, so we continue to pray for improvement and healing.
I had my Ultimiris Infusion on Thursday, and it kicked my tail. Both Thursday & Friday I was throwing up profusely and slept a lot. I had a lot of muscle pain, which that hasn't happened in a while either... But... praise the Lord today I feel somewhat back to myself and relatively normal as of today.
We are continuing to plug right along and trusting the Lord for wisdom & guidance for each next step. I am SO GRATEFUL to be alive and able to share my story of God's love and mercy and how He's brought peace in the midst of chaos.
This morning, in my Our Daily Bread devotional book, the key verse was 2 Samuel 22:2-3 "The LORD is my rock and my fortress and my deliverer; The God of my strength, in whom I will trust; my shield and the horn of my salvation. My stronghold and my refuge...". As I read that verse this morning, I thought about how fitting this description is, especially in light of my current situation.
I hope you are having a WONDERFUL Christmas season with your family! I have a fun update coming your way on Wednesday with some things we've been doing!
Merry Christmas!
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