Wednesday, June 6, 2012

Mayo visit update (3rd appt) : FSGS Sucks

I had my appointment with Dr. Fervenza today.  Some numbers are good, some not so good.

The good news is that my protein has bone from 15.2 to 6.7.  You'd think I'd be elated, but folks, I've been here before.  The EXACT same thing happened when I started the clinical trial with Humira, ad we all know how that turned out.  So, I'm just thankful it didn't go up.

Great news is that my albumin is going up.  It's at 2.0 right now, and has been hovering around 1.5 for about a year, so this is definitely an improvement.  It also helps to explain why my swelling has greatly diminished.  At least there appears to be a reason for it, rather than just randomness.

Bad news is that my GFR is now at 39, my RBC is high (although I really am unsure as to what that means for's just BRIGHT RED on my lab results, and red is never good).  My creatinine is 1.5 (was 1.4 last month, it was 0.7 this time last year)...blah blah blah.

You know, it's funny...its kind of anti-climatic.  I live in a state of hyper-anxiety with this disease, and it's been progressing rapidly lately.  To hear numbers like this gives me a bunch of mixed emotions.  I'm not happy.  I'm not sad.  I

I am exhausted.  I'm beyond's like I can't take a deep breath, or if I do, the tightness comes back right away.  I feel as though I haven't slept for 2 days, physically.  I did yoga yesterday (yay me) but am now sore as hell.

I'm still incredibly thankful that my swelling hasn't come back yet, but there it is.....that word....."yet".  Some of you understand what I's nearly impossible for me to celebrate any "victories" because I don't feel like they truly are.  There's always something lurking around the corner.  This isn't going to "go away".  The likelihood of me going into remission are REMOTE...yet I'll keep doing what I can.  We're going to increase my prograf a little more, which means more tremors, maybe some headaches, a higher creatinine and a lower GFR.  But Dr. Fervenza promised me only 6 months of more, and he reiterated that today.  Only 3 1/2 more months to go :)


  1. Damn it - I miss your blog for a week and I get very far behind! Glad your protein is down closer to normal. Wish it was across the board...!

  2. Ugh. I don't even know what to say. I don't know how you feel because I'm not there... yet. There's that word. You are awesome. You get involved, you help others, look what you've brought together with our FB group. Thank you for turning your trial into something so positive & needed. I am grateful for you.

  3. I have been reading your blog since Christmas and know how you feel. I was diagnosed with FSGS in January but haven been told there is no chance of remission just control until the need for dialysis. Chin up and keep smiling, thats all we can do. Best wishes.

  4. I Have been put on Acthar (suppose to save my kidneys )from any more damage,it was either that or give up my Transplant!!
    I have fought hard for 12 years to keep it and in one day the Docs want me to give it up,. I said ,well you can imagine what I told them... This stuff is killing me.If any of you learn one thing today ,Please LEARN to BECOME AN INFORMED patient...


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