Nephros Herne

I can’t just have a fucking kidney stone. Oh, no, that would be too ORDINARY. Instead, I have a type they call “Staghorn Calculus” because it looks like a damn stag’s horn. As in it’s freaking HUGE and, apparently, grew over all the years that my doctor’s refused to listen to me when I told them I was having back aches, constantly urinary tract infections, etc.

Oh no, they were just certain I was a “badly managed” diabetic so naturally, I was wrecking my kidneys by being poorly managed and any further testing or examination was just not justified.

Mind you, they meant not justified by your insurance company, and if they’re not willing to pay, we’re going to do our best to dissuade you because THAT is what insurance companies have done to medicine.

I have been complaining to my doctor’s about my back, bladder, and urinary tract issues and pains since NINETEEN NINETY THREE, folks. That’s twenty-eight (28) YEARS.

They all assumed I was making shit up. They all treated me like I was a moron. They never listened.

But then, last week, I was on the table for lumbar x-rays that had also been put off, ignored, and dismissed since 1993.

And the TECHNICIAN in the room, at the helm turns to the assistant helping position me between shots and says, “Did she have a contrast procedure recently?” They both look at me and I shake my head and say, “Nope. Why?”

They huddle over a screen I cannot see and the technician (male) suddenly says, “Oh my god. That is the biggest kidney stone I have ever seen.” The female assistant elbowed him and they both made light of it all as they hurried me from the room post-accompli.

I checked MyChart later in the day and sure enough, my rheumatologist notes the presence of a staghorn calculus in my left kidney.

So… I send up notes to both her and my primary care provider asking, “Is this serious? What is to be done? When?”

I’ve been waiting over the weekend for a response. I suspect they are holding for results from a 24 hour urine study I turned in on Friday as well.

But every outlet of information seems to be very clear… this is Not A Good Thing™. I will reference this, most credible one for current treatment protocols and noting that there’s nothing conservative about dealing with this one. You remove it. Either by sound pulverization or by surgery.

https://pubmed.ncbi.nlm.nih.gov/3660961/ which I will now quote from that link the abstract (summary):

On the basis of the examination of 24 patients with unilateral or bilateral staghorn calculus, who could not be operated for internal reasons, is reported on the course of the lithiasis. The observation time is between 2 and 9 years. In all patients an infection of the urinary tract was present. During the observation time in no patient a growth of the calculi could be stated. 6 patients who died of the lithiasis and uraemia already when the diagnosis was made had a functionless kidney greatly restricted global renal function. In the living patients no progression or exacerbation of the infection was revealed. The suggestion that a staghorn calculus necessarily leads to the loss of the renal function cannot be confirmed on the basis of the literature and the own results. Though there is no doubt about the advantage of the operation, in an increased risk an expectant attitude with conservative therapy seems to be justified. An infection of the urinary tract cannot be treated conservatively.

Flamm J, Forstik F. Zur konservativen Behandlung von Ausgusssteinen
[Conservative treatment of staghorn calculi]. Z Urol Nephrol. 1987 Jul;80(7):395-400.
German. PMID: 3660961. (emphasis added – ed.)

So not only is the fact that I’m sitting here with said UTI which cannot be treated conservatively given that I have Nephros Herne living, rent-free, in my left kidney for WHO KNOWS HOW LONG?

I am currently experiencing uraemia and a few other ‘imia’ would, I think, make people move quickly. But I know my perspective on “quickly” rarely aligns with anyone elses… so I suppose I’m waiting for them all to discuss, decide, and then tell me what we’re doing. But you know, part of me thinks it should be obvious, given the information available.

I guess we’ll see. (Actually, if I haven’t heard from anyone by tomorrow at noon, I’ll be requesting a referral to a Nephrologist for formal treatment planning.)