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 me....it'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 just.....am.
I am exhausted. I'm beyond anxious....it'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 mean....it'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 this....no more, and he reiterated that today. Only 3 1/2 more months to go :)
I gotta be honest....I don't feel much like posting here lately. So many times I start writing the post kind of "in my head"...
It's been a long time since I posted here....I'm not going to even try to catch everyone up, so let's just dive in, ok? Anyo...
I met with the vascular surgeon yesterday and things are moving quickly. I've got a revision surgery scheduled for this Friday morning....