Hi, new to all this.
Bit of background: Had a CT scan end of Jan for anaemia investigations and, due to suspected tumours in the bladder wall and left ureter, was sent down the 2WW suspected cancer pathway. I have just got the final all clear so no sign of cancer after almost 3 months.
However, during all this, the scan showed severe left sided hydroneureternephrosis (ie swollen left ureter and kidney), due to a problem with the blockage in left ureter.
They originally tried a flexi cystoscopy but it failed due to a partial blockage in my urethra. So it was done under General Anaesthetic to correct blockage as well as take loads of biopsies for the suspected cancer. Due to the mess my bladder is in, the surgeon wanted to fit a stent to protect my kidney but couldn’t find the opening.
In all the paperwork I’ve had, theyve always said the eGFR from blood tests has been over 90 so fine, and they have never talked to me about the left kidney…
Yesterday, 2 months after the operation, had my first consultant appointment of any kind to get cancer all clear and what I had thought would be a plan to fix ureter blockage. They have no plans at the moment to do anything about the blockage which was a huge surprise to me. From the PET CT scan he said my left kidney was “not doing much” and they want to do another CT in a few months time to “see how it settles”.
I had written a list of questions but got little answers of any kind. Id asked how serious the left kidney was and he didnt say any more and same with the ureter and when I asked can ureter be fixed, he said in some cases. I’d asked about the kidney pain and foaming wee and he said “its probably back pain”. I know its NOT back pain as I’ve had back pain before, its definitely kidney pain as its the same as when the catheter backed up overnight regularly, just not as intense. I’m currently taking the max dose of paracetamol and ibuprofen to keep it acceptable so quite upset he was so dismissive of it.
Due to poor mental health and anxiety, I struggle to ask questions at meetings like this, so my head only really works afterwards in terms of responses.
So I am very confused and don’t really understand. 2 months ago he wanted a stent, now its not even mentioned (too late?).
I have done a fair bit of research into what gets done with a blockage etc. What I don’t understand is why they aren’t doing ANY tests for function of the left kidney specifically? I know they can do that with a MAG3. I also know that knowing what function is left is a decision making criteria for operating to decide if the kidney is salvageable.
I also have worsening anaemia and suddenly severely increased blood pressure the last couple months - GP wrote that off as “it happens”, and consultant didnt seem to care. I know a bad kidney can cause anaemia and increased BP in its own right so surely there is a plausible link there?
From what I can tell, even with low levels of function, its common to fix the blockage to preserve what function there is to prevent further complications for that kidney.
If the damage is already bad, it seems I don’t have time to let it get worse! Next CT is in 3 months, then probably a month or more to see the consultant, then what? months before some other tests?
Without some kind of test to see if any of this is worthwhile, it feels to me like this is default “conservative management” of the left kidney and they are just going to let it die completely without any attempt to see if its even salvageable.
This is complicated by kidney issues being heriditory with my mum dying of kidney failure at about the same age i am now. I worry that I won’t have the same spare capacity as someone my age without those risk factors.
I worry that although on paper my overall eGFR is “fine”, how much reserve capacity do i have in right kidney? how much is left kidney doing NOW and how much will that add stress the right one if left to die?
It feels like i am sleep walking into kidney failure in a few years time all because they are writing off my left kidney without having actual specific figures for how scewed it is or isnt?
I feel a complete passenger in all this with no say or right to question things. In my opinion, without further proof the kidney is totally not worth saving, why would they not want to try and correct blockage and preserve what function I may have left?
I really don’t know what to do. Is there a way I can get them to do the MAG3 so there is a definitive answer on left kidney function? i feel that should be crucial to deciding what to do next? Is it worth asking for a second opinion or will that be pointless with the only limited info available and lack of specific left kidney function info?
It would help if there was a way for me to now ask these questions i have rather than waiting 3-4 months when things will be almost certainly worse.
Is it worth speaking to the PALS team for advise or will i just be wasting their time?
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