I got my most recent test results back last Friday. Needless to say, they were surprisingly bad. My protein has shot up from 7.6 grams to 16.5, my albumin is around 2, and my creatinine is 1.06.
I've been mulling this over for days, and I've gotten nowhere. Don't know what to think....don't know what to do...don't know even what to say anymore when people ask. I say "I'm waiting for my kidney's to fail", and they look at me strangely. But it's true. That's what I'm waiting for at this point. This damn FSGS is PISSING ME OFF! I'm not sad (thank you Welbutrin and Lexapro)...but I'm PISSED at everything this disease has taken, and will take, from me.
I've stopped taking Prograf. It was preempted by the awful (yet completely unsurprising) experience with our new mail order pharmacy company that my insurance/work is shoving down my throat). I'm weaning off of prednisone still...have about another month or so to go.
The most ridiculous thing is that the doctor I saw at The Cleveland Clinic LAST NOVEMBER FINALLY called me...on Friday. He may be a fantastic nephrologist...top of his field, but his bedside manner could use an overhaul. Needless to say, after reading my biopsy samples, he agrees with everything that's been done so far, but would recommend me going back on prednisone. When I asked him why, after going on it already at 70mg/day for 6 months, did he think trying it at 125mg/every other day would yield different results, he said, "I don't know if it will. But why not give it a try. It's safe". He seems to be completely convinced that I will experience no side effects by taking it every other day. Here's the thing...he doesn't have one shred of data to back that up. There is absolutely NOTHING that can convince me that I won't experience those awful side effects.
I've spoken with my nephrologist at length on Friday and Monday, and I still have no answers. And I'm tired of it. Just tired. Every time I do labs I think, "This is it. Now I'll have an answer." And it NEVER EVER happens. There's always something else they (they being the medical establishment) throws out there. My neph is no different...I really like him as a doctor, so please don't miscontrue...he's just doing his job. He said, "What if it works?" And that's the kicker. That's what they keep throwing out there. And that makes people like me feel like fools if we don't try ONE MORE THING. And if my kidneys fail then it'll be all my fault because I didn't try this toxic medication ONE MORE TIME. I freakin' hate it. I've tried the drug, it didn't work, but I'd be CRAZY to not try it again...doesn't make a bit of sense. So what the hell am I supposed to do?
The only reason I'd even think about trying it again is if Joacim would agree to having another baby. That's the ONLY reason at this point. Remember earlier when I said that I just felt that I'd be OK through pregnancy? Well, that's shattered. Done. Gone. It would be irresponsible at this point to try to bring a healthy baby to term....LOTS of risks to a fetus...let alone me. And this drug would have to provide a miracle for me to even think about trying to conceive. It was different when I was spilling 5 grams, but 16.5 is a whole different level, and it's just not safe. So I'd have to take prednisone for 6 months (assuming it put me into remission, then wean off for another six months, and then wait another six months to see if I remain in remission. Do the math. I'd be pushing an age where I'm not sure I'd be comfortable having another little one. I know that physically it's possible, but maybe not for me. Kidney disease takes a lot out of me, and it's unlikely to get better.
So, again, what the hell am I supposed to do? I'm looking to anyone for some perspective...not ADVICE. What am I missing? How can I interpret this differently? Please understand how terribly grateful I am for Izzy...I cherish that little girl, but please also understand how I grieve for the brother or sister that Izzy will never have. That doesn't make me a bad person...that makes me human.
Now my neph is talking about putting me on blood thinners because my risk for clots is rising. This can't be good. I can't bring myself to look up the drug for fear. I just can't deal with it right now.
The depression is growing, but I'm aware of it. I'm going to start seeing my therapist again...try to make sense of it all. There's just so damn much to think about, and I need some help sorting it out and putting it in to perspective. So Judy, if you're reading this, expect a call very soon :)
And if anyone has some perspective...some sage words...some happy thoughts, please, comment here. I could use a rally :)