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I've finally got my kidney stone operation, anyone had a nephrostomy reversal?

21 replies

onlyjoking9329 · 22/05/2014 19:13

Ive just had another week in hospital but have been very very ill since January when I was blue lighted to hospital where they confirmed my kidney stone suspicion.
this is the third time I've had them. They tried to move the stone which went a bit wrong and I ended up in ITU with sepsis multiple organ failure, pneumonia level two respiratory failure full life support including a traechostomy a nephrostomy and an induced coma. I was extremely lucky to survive.
After two weeks in ITU I came home with a nephrostomy to divert the urine around my stone.
This was initially a short term measure.
After three failed laser treatments due to infection, they are now going the surgical route, I agreed to this and would have done anything to be rid of the stone.
Now my appointment has come through for my op 2nd June,
They said if the op goes ok then they will clamp the nephrostomy for 24 hours to see if my plumbing is working.
I will need another operation to reverse the nephrostomy, but I don't know when that will be done as I'll need another anaesthetic and I don't know how close together you can have anaesthetic, does anyone know?

I'm very +++ Anxious about the operation due to the last one, I know that they are very aware of what happened last time and will want to avoid a repeat of that, so really this op should be safer given what has happened.
But I can't stop the tears and nightmares, I've been listening to relaxation aps necking rescue remedy washed down with oramorph for the pain, of the stone andI have thrush around my tube, it hurts, a lot.
I need to calm down but I don't know how.
Please Come and talk kidney stones with me, fellow stoners.
Sorry if none of this makes much sense on a screen, it's not making much sense in my head, but I'm hoping it will help me to write it down here.

OP posts:
JamJimJam · 22/05/2014 23:52

Blimey, what an ordeal.

Can't advise on nephrostomy, but my dh has recurring kidney stones in one kidney due to a narrow renal pelvis.

The last time they needed removal (about every 10 years), he had repeated sessions of lithotripsy which did nothing but put him in A&E several times with renal colic. Finally he went to Guys and had percutaneous nephrolithotripsy which worked really well and was what he should've had from the start.

I hope whatever method they use, it works for you.

nevergoogle · 23/05/2014 00:18

I really have no experience, but this sounds like progress doesn't it? Hang in there OJ.

The thread is a good idea. Soon you'll be reading it back and seeing how much progress you've made.

onlyjoking9329 · 24/05/2014 01:43

Thanks google, how are you doing now?
Thanks Jimjam
Sorry your DH has had kidney stone, they are real nasty, interesting that he's had them every ten years, I've had them three times, with an interval of ten years each.
I went for lithotripsy initially, each time they couldn't do it due to having an infection. I'm having internal laser treatment, that sounds the same as your DH had.
Did your DH have a nephrostomy?

OP posts:
JamJimJam · 24/05/2014 20:20

No, no nephrostomy.

He had an MRI recently, for his prolapsed disc, and they mentioned the presence of kidney stones again . So far, no symptoms, but it's probably only a matter of time.

nevergoogle · 25/05/2014 21:22

I'm doing really well OJ, Thank you. Just trying to build up my stamina slowly and feeling a bit frustrated at very slow progress. Trying to remind myself it's only 8 weeks since surgery, plus the traumatic birth and the 9 months of hyperemesis before that. It's not going to be as quick a recovery as I would like.

how are you feeling now?

onlyjoking9329 · 27/05/2014 00:43

Jimjam I will cross my fingers that your DH stays well and with no need of further treatment.
Google be kind to yourself, healing can't be rushed, there are no short cuts.
It must be hard having had a section and a baby to feed, plus looking after the other childen.
I need an updated baby photo-pronto.

I've been out of hospital a week now, thankfully it was just sepsis this time. I have yet another UTI and raging thrush to go with it.
This time next week my op will be done and dusted and then I can get on with the real healing, my teens are finding it difficult to cope with.
I have a medical tomorrow for PIPs, I may accidently open the tap on my leg bag should they give me a hard time Wink

OP posts:
QOD · 27/05/2014 00:56

Finally hopefully you'll no longer be stoned!

I've had anaesthetics 3 weeks apart for kidney stone removal

onlyjoking9329 · 27/05/2014 01:04

Thank you That's good to know QOD, I want rid of the stone and the nephrostomy it's hard to find any clothes that fit around my nephrostomy bag, I've had many a leak.
They are so bloody painful, I've been suffering since January with this one, it's 4inches, it more a boulder than a stone.
I hope your stones have gone, never to return. How did they get rid of them?

OP posts:
QOD · 27/05/2014 07:43

Ureteroscopy with laser, pokey camera, laser wire fed thru and zapped stone. The bits scooped out.
Round one was to try to grab, give up and then leave JJ stent in, round two to go back with laser.
Had the same thing twice, 2005 and 2010. Passed tiny stone in 2000

onlyjoking9329 · 27/05/2014 12:28

Thanks QOD, I have very little in the way of memory but I think you might have been on a previous thread, did you have treatment abroad whilst on holiday?
I've read about having a stent left in to ensure the pathway stays open enough for stone exit.
I'm having the internal laser and retrieval of whatever they can get, I've been told it may need to be repeated due to size and position, that will become clear once they are in there.

OP posts:
QOD · 28/05/2014 22:05

I'm sure I answered this earlier!

Yes I was in Cyprus and mum, dd and dn came home without me ... Sniff

I am going to Cyprus in June and I'm due a kidney stone in 2015 ...... Fingers crossed aye!

SunnyL · 28/05/2014 22:11

I had 8 stones removed about 15 years ago. I've also naturally passed stones about every 2-3 years since then so I can fully understand the pain you are talking about.

I didn't have a reverse nephroscopy. I had keyhole to remove my stones but the system backed itself up. Basically I didn't pee for 6 days until they removed the tube from my back. Very strange experience!

I had the tube removed between my kidney and bladder (ureter?) and a stent fitted. 6 weeks later they went back in and removed the stent.

Good luck with your op - the end of your ordeal is in sight.

onlyjoking9329 · 30/05/2014 02:19

That's a lot of stones over a lot of years, you poor thing it's so painful this is the third time I've had stones, this time has most certainly been the worst.
They often like to go pop in and put a stent in the keep the passage open in order for the stones to pass.
Sleep well and take care of yourself.

OP posts:
SunnyL · 30/05/2014 06:46

sadly if you get stones once, chances are you'll get them again. For me we didn't realise I had stones for a long time by which time they'd made quite a lot of damage.

I think things are getting better though. The last stone I passed was my brother's wedding in 2008. Grin

onlyjoking9329 · 30/05/2014 21:43

I've had three lots of stones, I've had them at ten year intervals, I'm not sure what damage has been done, my stone is 4inches which is the average size of a kidney.
I've read that too much calcium and green leafy vegetables can encourage stone growth.

OP posts:
SunnyL · 31/05/2014 10:36

Yes I'd read that diet can cause stones. i asked my dad who is a Gp who says unless you get the stone analysed its impossible to know what dietary restrictions to follow. For example I drank apple juice by the litre as a teenager and US Health websites say to avoid apple juice if you are prone to a certain type of stone.

4 inches is a monster though Sad

the good news is you'll forever be a cheap date as I'm still incapable of drinking alcohol in any volume without falling over Wink

Weegiemum · 31/05/2014 10:48

Really feel for you. I had cascade small stones in my kidney caused by pregnancy and infection. I had them for 4 years in total, and though it eventually resolved we were talking nephrectomy by the end. Passed 4-5 stones a week, pretty much every week, and they were tiny and very, very sharp (ow!).

I don't have any experience of your particular problem, but I always look out for kidney stone stuff as I know how awful and alone I felt with stones that some (well, one really nasty doctor) thought I was making up, 3 dc under school age and raging PND!

I have had a renal stent twice, I didn't get on with them at all, both got infected (one with a hospital-source infection that shouldn't have happened).

I'm so sorry you're going through this, it's quite terrifying to be in that much pain. Glad you've got a date etc .... Keep us posted!

Weegiemum · 31/05/2014 10:53

As for the cause, it's usually calcium-oxatlate stones that are dietary.

Other common types are uric acid, pure calcium, and calcium-ammonium which were mine, caused my infection. Have you had your stones analysed?

QOD · 01/06/2014 12:22

I was told to have a low protein, low calcium diet as I've had them three times, I then had a gastric bypass and have to follow a high protein high calcium diet and I also have to take calcium supplements Grin

My lovely kidney consultant laughed, shook my hand and said he was looking forward to seeing me again ...

In fairness to me/gastric bypass etc etcMy as I've had stones 3 times already I have something like an 85% chance of having them again regardless of whether I ate purely grass and drank only water ...

onlyjoking9329 · 01/06/2014 18:22

Thank you QOD let's hope you won't have to see the kidney doctor again
Weegie, I'm hoping they can find out what type of boulder I have, I'd rather like to avoid more stones.

OP posts:
QOD · 01/06/2014 20:22

Hopefully yours will be uric acid based as you can then take anti gout meds. Mine flippin weren't

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