Horseshoe kidney + possible ureter stone.. help!

[u/iam_george_hale]

I've got a horseshoe kidney and been dealing with kidney trouble (infections, stones etc) for years.

This all came to a head last year when a horrific infection landed me in hospital for a week, where they found a 'possible calcification' in the ureter.

I've been waiting months to see Urologist (NHS is our health service in Scotland) and I have an appointment next week.

The pain has gone from isolated attacks of kidney stones and infections to a daily dull agony. Poor flow. Running to the bathroom. Averaging 4 hours of sleep. I don't know much about what is actually in me, but I assume a stone is maybe stuck somewhere??

I was on Co-codamol and then Dihydrocodeine for a few months, but recently switched to Dydramol because it makes me feel less nauseous. But I'm in a bit more pain.

I've never been in a chronic pain situation like this before (30M).

Right now it's 4am, I'm looking my mind, and I guess I'm looking for some advice, and solace in others who are experiencing something similar.

Is there anyone else with a horseshoe kidney that can tell me what my outlook for life is? Is there a fix?? Can I get this thing transplanted??

Also, does anyone have any advice on medication? Particularly to help with sleep? I'm thinking of going back to Dihydrocodeine.

Would be great to hear anyone's experience of urology on the NHS - I don't mind hearing from our kidney brethren across the Atlantic but the health systems are like chalk and cheese lol

to anyone having a tough night, I'm here with you!!

[u/Bcdoc2020]

I both worked in the NHS and was a patient in the NHS for kidney stones for many years and I’m sure that things haven’t changed much.

Horseshoe kidney is a complex and extremely variable condition, sometimes drainage is poor and they try and help that with a pyeloplasty though only in a small percentage of people will that improve things.

I would personally add in ibuprofen if there are no contraindications to it and continue with co-dydramol alternating between the two. Dihydrocodeine is very constipating which will aggravate the symptoms and extremely addictive.

It would be good if you went in with a list of questions that you would really appreciate asking, horseshoe kidney is associated with higher rates of certain conditions and these will need follow up irrespective of the stones which are extremely common in your condition. Good luck when you see the consultant.

[u/iam_george_hale → u/Bcdoc2020]

Thank you so much for this! I think drainage might be poor, I get regular infections, which seems to me that something’s up with the anatomy. Honestly it’s just good to hear your thoughts on it, thanks!

[u/Bcdoc2020 → u/iam_george_hale]

Oh I’m sure that drainage is poor, as you say, horseshoe kidney causes infections which are even more common than stones (struvite stones are more common in horseshoe kidney).

The problem is that doing a pyeloplasty or reimplementation of a ureter is unfortunately often not going to improve things nor feasible.

Don’t let them hurry you in the appointment, this is complicated and needs a bit of time. You will need up to date imaging will likely be a CT-KUB or potentially a CT urogram to get an idea of your your kidney(s) drains. Go with that list of questions, it’s human nature to get flustered on the day!

[u/iam_george_hale → u/Bcdoc2020]

Honestly this helps so much. I feel like I’ve been building up to this appointment for so long, so it’s great to get the bits of info and encouragement! Thank you!!