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I need advice on what is worth it for treatment atp

Stone Fighter #72299FStone Fighter #72299FMay 16, 2026👁️ 1.0k❤️ 142
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Patient journey

Minor context when I say him im talking about my urologist and I'm 17 now nearly 18

So for some background I got my first stone at 8 years old went to the ER and it passed skip ahead a few years to late 2021 I'm told I need surgery to remove some too big to pass it ended up being scheduled for just under 4 years ago I don't remember the name of the procedure but I had a nephrostomy tube that he went through to blast them since then I've had surgeries of different kinds at maximum 6 months apart sometimes spending months with an internal stent that he would replace and blast more stones each month

I've had a stricture in my ureter from how many times he's been in my kidney through the penis and I probably have another one right now. The majority of my teen years have been spent dealing with stones and other health issues to the point that I'm not sure I ever really got to be a teenager

Now for this month I had a nephrostomy tube put in that he went through to blast stones but do to some complications he had to leave it in with a bag to collect urine the nephrostomy tube was removed a few days ago and he said that I should see an adult urologist after my next appointment with him because they can probably do more to help

I've been bringing up just removing the damn kidney for a year or two not but that's been fully off the table until very recently and auto transplants have been mentioned a few times so I want to know if anyone here has had anything like this and if they regret it

Comments (2)

Stone Fighter #432B42Stone Fighter #432B42Apr 30, 2026

Have you done a 24 hour urinalysis with blood draw for serum calcium, ionized calcium, active and inactive Vitamin D and Parathyroid hormone to see why you're making stones? Also there's a genetic panel can be done.

Stone Fighter #761060Stone Fighter #761060Apr 30, 2026

Can’t help, but just wanted to say how sorry I am to hear that. At your age it’s awful you’ve had to experience that kind of pain so often.

Stone Fighter #775F1FStone Fighter #775F1FMay 1, 2026

I've had plenty of blood drawn for tests I don't know the exact ones though so maybe, I do a 24 hour urinalysis every year did it early this month actually and I did do a genetic panel though that didn't leave any indicators of anything that was brought up iirc. I have a malformed kidney that is tight in some spots that makes it difficult for stones to pass

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