Even after all this, I still like my local nephrologist. I still think she’s a good doctor. I think that generally some doctors just get scared by taking things on that are out of their wheelhouse. I think mostly they’re afraid of lawsuits, if I’m honest. But she’s aggressive and she took my case seriously. She just didn’t have the follow-through. And with a little bit of distance from it now, I really think she doesn’t believe in the success of this treatment and feels I should just accept my fate.
Hey, if that’s the reality, I will accept it and deal with it when the time comes. But hell, don’t think I’m not going to go down swinging.
And what if I weren’t the type of person who would research this on her own? What if I didn’t have the balls or whatever to cold-call a doctor I’ve never met? What if I were one of those people who simply believes what the doctor tells us (because shouldn’t we be able to believe what the doctor tells us)? Or what if I were just too overwhelmed by the diagnosis and the implications to put it all aside long enough to try to create a plan? Or any other number of things that would prevent someone from taking hold of this and trying to find a way through it?
The point is, I shouldn’t have to fight for my own health care. None of us should. It’s why we go to the doctor. We put our faith in their expertise. It’s why we pay them and why our insurance pays them. To Follow. The. Fuck. Through.
I told Dr. F at our last meeting, “You’ve had one patient with this disease. And now you have me. You’re going to have another. So YOU need to have a plan in place for these patients. You don’t to put it on us to figure it out. That’s not how it works.”
I truly hope she thought about this long after I walked out of her office. I know that if one of my patients said something like this to me, I would give it some long and thoughtful consideration. Did the patient have a valid point? Did I slack off and not fulfill my role as a health care provider? It would stick with me for some time, and it would definitely propel me to change how I worked with patients. I’m hopeful my mouthy self might help future patients get the treatment they need.
There were times I felt gaslit. Was I expecting too much? Had I crossed the line from being a self-advocate into just being a pushy broad? I’m so grateful to have family and friends in my life supporting me, telling me “NO, this isn’t right. This isn’t how it’s supposed to be.” At the head of that line is Rose (Rose knows ). She was just as dumbfounded and pissed off as I was, and so was the oncologist she works with. It’s just so tiring and unnecessary to have to battle your own providers for care. But I’ve just resigned myself to the fact that that’s the way it is now. If you don’t fight, good luck to you. It’s just another sign that our health care system isn’t broken, it’s shattered. I have little faith it will ever be fixed.
I still have many questions about all this, the foremost one being, if this treatment is successful, what exactly does that mean? Will my kidney function improve to the point the anemia is resolved? Will I actually feel better? Or is it primarily to slow down the progression? Am I just buying some time and can still expect renal failure at some point in the future? Who knows. Because it’s such a new disease (first identified in 2004, which is pretty new in the world of diseases) and treatment was only recently identified, there are no long-term studies available yet. So for now, we’ll wait and see.
If only I could get out to Pittsburgh.