I was absolutely dreading today. I’d been dreading it for weeks. I had an appointment with the new nephrologist I’m being sent to, to evaluate the condition of my kidneys and the chronic pain they’re causing. I’ve blogged a bit already about how incredibly awful all my previous nephrology visits were. One of the asked me what I knew about my condition to try and get ideas for treating me, one, in an attempt to ease the nervousness I was feeling, introduced a whole host of new fears to me which I’d never even thought to be afraid of before. But all seemed to not care, because I wasn’t in as dire condition as their other patients. They seemed awkwardly embarrassed that they didn’t have anything to offer me and just wanted to get me out the door as quickly as possible. They did not care.
And it’s true that so far I’ve absolutely adored all the new batch of doctors I’ve been seeing since we moved. Geoff kept trying to encourage me that perhaps my luck would hold and the nephrologist would be awesome as well. I was not optimistic. But you know what? He was right.
This nephrologist is amazing. She has actually seen and treated other people with medullary sponge kidney. I am not her first patient with it, as I was with other doctors. She cared. She listened. She asked me lots of questions, and let me ask her lots of questions… which she then answered thoroughly. But her first order of business was to make sure I understood that MSK is a benign condition and there’s no reason to think that it will cause future kidney problems for me in the future… and my kidneys are functioning perfectly well right now. This was very good news to me. Other doctors had led me to believe that I had two ticking time bombs in my abdomen, and it was only a matter of time before the shit really hit the fan; as if I could feel much worse than I do already.
She’s sending me for an ultrasound of my kidneys since it’s been a few years since anyone has looked at them, and she doesn’t have copies of those pictures anyway. That will also rule out stones, which neither of us think I have, but is good to make sure of. Once she sees what the ultrasound shows, we’ll talk about how to proceed.
But, importantly, she is also not convinced that my chronic pain is due to my kidney condition. They may be two separate issues. This is good and bad. It may mean I can really, finally, stop worrying about my kidneys and what they’re doing day to day, and how my future will be colored by them. But if the pain isn’t caused by my kidneys, we seem to be back to square one with an unknown, mysterious cause. That’s frustrating. I just want to know what the fuck is wrong with me so I can have some chance of doing something to make it better. But if the kidneys really, truly aren’t the cause, well, that sucks that I’ve been believing they were for the past two and a half years, but let’s not waste any more time blaming them and find the real cause.
At one point during my appointment, the doctor asked me about other health problems I have, so I started rattling the list off. As I got to the end, she looked down at the notes she’d written and said, “That’s too many health concerns,” with great compassion and sympathy. She told me, after I listed all the medications and supplements I’m on, that she can understand why I’m willing to try just about anything to feel better. She gets it. You’d think that wouldn’t be a hard thing to find in a doctor, but it is.
I’ve left just about all my other nephrology appointments in tears, from fear or anger or frustration. Today I left wanting to cry again, but this time from relief.
I needed to catch a break, and I did. I am very, very thankful for this.
There are many unknowns still. But it seems like I now am being supported by a team who will help erase those unknowns one at a time.