Waiting patiently...

This week was a relatively slow week. Last week was such a flurry of activity, that the rest was welcomed (and needed).

The Ultimiris infusions have been ordered by the kidney doc, so we've been working on all the insurance pre-approvals for that all week. Our out of pocket is gonna be $8,000, which is better than we anticipated since a year's worth of doses is roughly $500k. My doctor applied for me to be in a program with the manufacturer where they assist with the out-of-pocket costs. That got approved today. Praise the Lord for this provision!

We did dialysis education on Monday, just in case that becomes needed. The nurse that did the education was super nice, and she loves Jesus so it was a pleasant interraction. We have chosen the peritoneal method at home should I come to that point. Walking through the dialysis center, however was a sobering experience. I had never been to one and had never actually seen the actual process. There was a sea of chairs - way more than I expected - imagine 4 rows of 20-25 reclining chairs (the kind you see in hospital rooms). The patients all looked miserable, depressed, and like they desperately didn't want to be there. My heart ached for the people getting their treatments that day, and I prayed over them silently as we left the room. I held back tears (not for myself, but for them)... I think I held it together well, and don't think J or the nurse even noticed. If they did, they didn't say anything. I also prayed God's protection that it wouldn't come to that point for me.

Then, I met with my hematologist on Thursday, and felt so encouraged after seeing him. He was my absolute favorite doctor when I was in the hospital. He prayed with me every single day and even called me after I left! I am so grateful that God put him back in my path. He was really helpful and told me I was his healthiest patient of the day. Dr. E thinks the infusion route is a good step. He also said when we get the official confirmation labwork back for the aHUS diagnosis that he would take over as my primary provider and the kidney clinic would move to a secondary. He reiterated that I am quite the bizarre patient and that nothing really adds up with me. My presence doesn't match my labs. He was pleased to see that I am still feeling relatively well despite such awful labs. He said to look at me, you wouldn't know I was as sick as I am. I told him that was all God's grace and hand of protection on me. He agreed.

This week, my Creatinine is at 11.9, GFR has dropped to 4 (should be 90). Potassium, chlorides, sodium, etc. are all still normal. I'm still going to the bathroom like normal which surprised him. He said usually with numbers like that, you no longer produce urine... Again, God's mercy. He said he understands why dialysis hasn't been started - because the markers used to determine whether or not to do it are all still normal.

My arms are bruised up from being stuck so much during lab draws this week.

The reticrit (erythropoetin) shots are working. My hemoglobin has come up. I'm sitting at 8.2 right now. It is running my blood pressures super high though, so we are playing with my blood pressure medications again to stabilize that.

The meningitis shot side effects took me down a bit this week. I've had a blistering headache since last Saturday + nausea/vomiting. I'm praying that passes soon since I'm on day 8 post immunization.

Despite all of that, I'm still in good spirits and am trusting the Lord's timing. I'm at peace with whatever next step He chooses for me, and that makes the waiting bearable. I've always said that patience was not my virtue, but I'm learning to have it. I know the healing journey for me is not going to be an overnight fix, so I just pray my way through it. I am SO grateful for such a supportive family, friends, and church-family! They have been incredible... encouraging me and always pointing me to Jesus.

God's grace abounds! It's easy to get down and depressed in tough times, but regardless you CAN have joy and peace in the middle or tumultuos times. The bible says so...

You will keep him in perfect peace, whose mind is stayed on You, because he trusts in You. -Isaiah 26:3

And let the peace of God rule in your hearts, to which also you were called in one body; and be thankful. -Colossians 3:15

Now may the God of hope fill you with all joy and peace in believing, that you may abound in hope by the power of the Holy Spirit.-Romans 15:13

That's what I hope you take away this week... you CAN have peace and joy in the middle of whatever battle you are fighting!

Patiently waiting,

Kimberly