Unexpected Grace

Update #25

I am so elated to write this update! (I just realized it's been a month since my last one - sorry about that.)

Earlier this week during Sunday school, the Lord spoke to my heart in so many ways! We were covering the last few verses in the book of James and God was just working away on me. I don't remember a lot of what was covered during class because I was distracted in my own little world - just me and the Lord.

Lately, I have felt so discouraged and defeated. The extreme nausea/vomiting has returned. As of today, I haven't kept anything down 8 out of the last 9 days, and I'm down 5 more pounds. My blood pressure has been going really high a lot lately (likely due to the poetin shots). Even though there have been so many little miracles along the way this last year, there have also been a few setbacks. Each flare up I've had has caused my numbers to fluctuate, and puts a lot of stress on my body phsically. Sometimes those setbacks can make us question what we know, or second-guess promises the Lord has given us. That's essentially where my headspace had been prior to Sunday school. Distracted. Discouraged. Worried. Questioning. etc. Sounds about like the Israelites, huh?

While going through our Sunday school lesson, so many good points were made during the discussion, but I found myself lost in my own thoughts and fighting back tears. God was teaching me something so different from what the other were discussing, yet so specific to my current situation as I was reading those passages. God was digging down and cleaning up my heart. The class began to pray over everyone's prayer requests, and I prayed silently on my own... letting go of all the discouragement and defeat. Then, the tears welled up. Quickly wiping them away so no one would see, as soon as class dismissed, we headed out. Something was different, though I couldn't put my finger on it, I could feel a change.

Monday morning, I had an appointment with the nephrologist. When he walked in the room, he had the biggest smile and told me he had great news for me. I had no idea what it could be. He told me that the other patient they are treating for aHUS had mysteriously started to recover. They can't explain it. That patient's kidneys were completely nephrotic on their biopsy. Dialysis was started immediately for them and Ultimiris infusions ordered. They had shown zero improvement since, and then suddenly after six months regained enough kidney function to come off of dialysis. Though the doctors cannot explain it, I believe it was the prayers of the righteous. I have been asking everyone to pray for this other, unknown person since I heard about their situation - God both heard AND answered!!!

I told the doctor that was AMAZING and I was so happy for the other patient, but can't understand how that's good news for me? He then proceeded to answer my question, and I could have never imagined what was coming...

The nephrologist had gotten back the report from the 2nd opinion hematologist I had seen at Wake Forest about a month ago. That hematologist has treated several HUS/aHUS patients and felt that there is a strong chance that I'll recover, but that this disease usually takes a long time to do so. The kidney doctor said that even though my case was not nearly as bad as their other patient, they were hopeful that my kidneys will heal more! Then the big news came...

He said at this time, we can stop pursuing a transplant and give my body a chance to heal.

In August he said we could delay the discussion for a couple of months, and then come back to it this fall. Now we are just on hold indefinitely in hopes of recovery.... The caveat is that this is the plan as long as my numbers don't start going backwards (or) they stop going down. He can't guarantee that I will never need one, but is hopeful for healing and recovery! So that's where our prayer continues.

WHAT AN ANSWER TO PRAYER! We are so grateful for a chance to REST and BREATHE! Everything we've been through the last year has been incredibly stressful, and this feels like a huge weight lifted off my shoulders. As I told a friend today, this is just another stepping stone of grace on the journey to healing!

So, for now... we wait, keep doing the Ultimiris infusions, and continue to pray for healing!

The doctors are giving me a rest and all are beginning to space out my appointments. I will go see most of the physicians on my team again around Christmas. After being in hospitals and doctor offices nearly every week for 14 months, I am thankful to finally have a break.

I think having this time to just rest and renew without the stress of a transplant (along with all the other nuances of having aHUS) looming over my head will give my body some much needed respite and allow my body to heal some.

At the end of the day, I know all healing comes from God. My kidneys still have a ways to go on the healing front, but He can do anything! At the end of the day, may He get all the glory.

Specific Prayer Requests:

• Thank the Lord for this transplant news!

• Creatinine to drop significantly

• Blood pressure to stay low

• Nausea/Vomiting to stop

I am so grateful for each and every one of you that have been praying with me for the last 14 months! This has been quite an experience, but we are trusting the Lord and leaving it all in His hands!

In Christ,

Kimberly