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Kidney stone leading to a stent,extremely anxious does anyone have any experience?

(5 Posts)
onlyjoking9329 Mon 31-Mar-14 14:50:09

I'm very anxious about my kidney stone and treatment.
My anxiety is due to ending up in ICU for two weeks when they tried to remove the stone, which caused septicemia multiple Organ failure, level two respiratory failure, intubation full life support, tracheostomy and a nephrostomy bag.
I still have the nephrostomy and have had constant infections, antibiotics and thrush, not to mention the agony of the stone.
I've seen the consultant today who gave me the options of
1)Trying again with Laser treatment (been cancelled twice due to infection)
Which will need around 5x 45minute treatments two weeks between each one.
2) Or a stent then trying to remove the stone that way.this would have to be repeated if not successful, kidney stone is 10cm.
If I go for option two,I will need a GA and there's a much higher risk of more infections. And even more risk of infection with a stent in place, that's what scares me

I'm very anxious about both options, but I'm leaning towards the stent.
Which will mean I can finally get rid of my nephrostomy bag.
I would welcome any advice especially anyone who has has either of the treatments.

onlyjoking9329 Mon 31-Mar-14 22:46:28

Hopeful bump.

Weegiemum Mon 31-Mar-14 22:53:13

I'm so sorry for what's happening with you.

I've never had a big stone but had pregnancy induced "cascade" stones - basically tiny bits of gravel every bloody day, constant infections etc.

I had my kidney "washed" and a stent in but I really didn't get on with either of the 2 JJ stents I had - my ureter was so sensitised that it just tried to expel the whole thing which was, frankly, fuckibg agony and I was in hospital on morphine for weeks.

I never has a big stone, but I did think about it and I'd go for the lithotripsy over several attempts - though passing lots of wee fragments is hellishly sore. Can they stent and lithotripsy to let the bits pass? I was on low dose daily antibiotics to stop infection in the stent - have they suggested that?

For me, the kidney pain was worse than any of my 3 labours. It's horrific, I really empathise!

onlyjoking9329 Mon 31-Mar-14 23:22:11

Hello lovely! Thanks for your reply.
I had my first stone at 30 when I was pregnant with twins, the gas and air helped.
Next stone at forty, and this one when I'm approaching 50.
Cascade stones must've been hellish, did you have to sieve your urine?
Do you still get lots of UTIs? Any reoccurrence of stones?
The problem with the laser is they daren't risk doing it if any chance of infection due to the sepsis risk. I've been ill with this since January and I still haven't been able to do the lithotripsy it's been cancelled twice due to infection.
I've got the nephrostomy bag so some bits of stone would come into the bag which sounds a less painful option.

The stent sounds like it caused you a lot of trouble and pain too, was the stent painful at first or did it later become problematic?
it's difficult to work out what's for the best, consultant said the surgery would be internal laser surgery, I think he said they put the stent in before hand to maintain the drainage and to allow better access to the stone. To ease blasting and removal.
I've been googling stuff but end up more confused than when I started!

Weegiemum Mon 31-Mar-14 23:50:35

It's terrifying really, isn't it?

I still am prone to utis, have to be very careful (drink 8 pints of water a day, have spot antibiotics to take after sex) and have had occasional stones since the regular ones stopped when dd2 was 2y10m!

I do wonder if ill ever be fully free of it, though my last stone was 4 years ago, the longest I've gone in 12 years!!

I luckily never got as far as a nephrostomy, but the stents (both inserted aseptically in theatre, one with a spinal, one under GA) both caused me trouble from the start - my ureter was so sensitive from passing so much that it went into serious spasm. Both gave me a positive response for nasty hospital-acquired bacteria within a week.

I honestly was at the point of asking for nephrectomy - having my left kidney removed!!! - when it stopped.

I've not got a lot of positive advice but I can sympathise. I think you have my email but Ill pm it anyway xx

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