Clinical Trial week 8 visit : FSGS Sucks

I had my 8-week follow-up appointment in Cincinnati on Tuesday. I was fortunate enough to have lots of company on this trip. My little sister is coming on vacation with us so she's staying with us for a few days before we leave. And, of course, if Auntie Bri is coming with then Izzy is too. And I also had my friend, Emily, and her 6-month old son,Will, came along too.

It was a rough drive because Emily and I stayed up WAY too late the night before making baby food for Will, and I was exhausted, which is why I'm so glad that I had everyone to entertain me and keep me awake.
Q
The visit was good and quick. They took my weight (gained 3 kilos....damn water retention), height, blood pressure (100/63) some blood and a random urine. Dr. Goebel came in and did a physical exam, which consists of him asking me how I feel and me bitching about my swelling:). He always says that he's seen worse, but for the life of me I can't imagine...ok, I guess if my skin starts to split then THAT would be worse, but it's still pretty crappy.

He talked about metrolazone and how it works differently than lasix (lasix works at the loop and metrolazone works on the proximal and distal regions). Okay, I may not have the regions named quite right, but the general idea is that they can work nicely in combination. My neph wasn't a fan of it, but I bugged him enough yesterday to prescribe it to me. He's very worried about me becoming dehydrated and ending up in the hospital (and judging by the sheer volume of pee overnight I can see why :).. And from what I've read, I need to watch out for hyponatremia, which is too little salt in the body. It's a tenuous balance it seems, but I feel fine so far. I'm drinking plenty of fluids but no reduction in the edema yet.

My last set of labs (taken at week 2) were:
Creatinine 0.7 mg/dL
Random urine 274.6 mg/dL
Albumin 1.9g/dL

This weeks labs aren't great...in fact, they're pretty terrible:
Creatinine 0.8
Random urine >700
Albumin 1.6

And here's the strangest part... I did a 24 hr urine on Sunday...labs came back from that. The first time did a random test instead of a 24 hr, and it came back at 304. When I got the 24 hr results back today, it showed that my protein had dropped by 50%!!! From 16500 to 8767.

I wish I could be excited, but the huge discrepancy between the tests that were run only a day apart just leads me to more questions. Again, I'm still not sure what it all means, and that's what I really need right now...some understanding of the direction that my kidneys are headed. I'm frustrated...again. Every time I get labs done, I hope for answers. But lately, all I get are more unanswered questions.