Friday, August 12, 2016

Not by the book

When I first met my doctor here at NIH face to face, he said very directly, that he had reviewed my full case history, and did not know why I had re-lapsed so quickly. I like the fact he is clear on what he knows and can explain and what he can't.

Once again, I am not a text book case - this time on HUS. Today my key kidney marker, creatinine was up, but usually with classic HUS both my hemoglobin and platelets should have been down. However, my hemoglobin was stable and my platelets were up. 

One benefit of being at NIH is access to a barrage of specialists. The renal specialists have been pouring over my data, and samples. They have confirmed I have Stage 2 HUS.. 

They think if I keep drinking lots of fluids it will auto correct and I will be able to go home in the next few days. My creatinine is the key marker we are watching. Normal for women is between 0.5-0.95. Mine has been steadily climbing the last few days up to 1.38 as of this morning.

The trial protocol is clear that if your creatinine increases 50% above the upper limit of normal (or 1.425 in my case) then you have to stop treatment. My doctor has set the threshold of 1.20 for me to be able to go home. 

I'm feeling better today and with my platelets up, my medical team is cautiously optimistic that my creatinine will be lower tomorrow, and that I will be on my way home over the next few days.

What does this mean for next round?  Top of mind for me is that I will have less time at home before I have to come back,  which stinks. My mobility will also be restricted next round. They believe muscle exertion precipitates HUS so I will likely have very restricted passes, if any at all, and will need more recovery when I get him.

I've been very tired and resting a lot, but am feeling better and hoping I can get back home over the weekend!

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