a.h.u.-what?

This week has been a flurry of activity around here... We've had new developments and improvements in my health.

On Monday, I went to the hospital and had an erythropoetin shot, which is a hormone that your kidneys produce to make your body produce more red blood cells. I can tell my hemoglobin is improving because my blood pressure was below normal, and has been slowly rising.

I shared with you last week, the drs are doing genetic testing. Tomorrow is THE DAY! I go see my kidney doctor and he has ordered the tests to be done.

The specific thing my nephrologist is looking at is called an aHUS (atypical hemolytic uremic syndrome). It is an ULTRA-RARE genetic syndrome that lies dormant until something triggers it. Once triggered, it causes blood clots in the vessels of the kidneys. This sydrome can also cause strokes and heart attacks. It is often missed & misdiagnosed as kidney failure because it is a cascade issue that causes the failure. You can see more about it at the AHUS Foundation.

My drs. were actually going to test me for it when I was in the hospital in August because my body was breaking down my red blood cells. Then suddenly that stopped, so they turned their investigations elsewhere. Seven months later, we are revisiting this theory. Oh, how I am praying we finally have an answer! This would definitely explain why I went downhill so fast.

The genetic testing takes 4-6 months to come back. The only lab in the nation that does these tests is at the University of Iowa. So in the interim, my doctor is going to go ahead and treat me for this with Soliris infusions. We'll continue to work on getting on the transplant list while testing this treatment. I'll have to take IV infusions every couple weeks. Then, if aHUS is confirmed, I will have a lifetime of infusions.

I don't really know what all of this means for me looking forward, but it gives me HOPE.

Even if God continues to allow a transplant in my life, there is always good to be found. If aHUS is what is happening in my body, they can treat it and avoid my body attacking a new kidney.

Our Specific Prayer Requests:

- Wisdom & guidance for my doctors

- The infusion meds would work

- For God's protection that my kidneys are strained & will resume filtering again (and maybe not too far damaged to still require a transplant).

- Healing and an opportunity to share this testimony.

Kimberly