Kidney Stones

[birdsong]

I live in the uk and have just had an operation to get rid of my 4th stone. I was scheduled to have uteroscopy to remove a stone in my upper ureter. First signs of this stone in April - only got into hospital in September but from reading this forum I realise I am not alone. Feeling frightened, in pain, trying to get medical attention, waiting and waiting - a familiar scenario.

An ultrasound showed my left kidney obstructed and 1 cm dilated. I waited over a month to get seen and when I arrived in the operating theatre they found a very large hard stone inside my kidney which was double normal size and not functioning. It took almost an hour and a half to blast it away.

I am now home after a week on very bloody urine and with a stent in place which is uncomfortable. My kidney feels like someone kicked it. I feel totally exhausted and breathless on any exertion. I am 50 years old and fit - used to walking and running and dancing. Now I feel like an old lady as I climb the stairs to bed.

Finding this forum has been fantastic - I only feel sad that so many people struggle not only with pain but with the difficulty of getting questions answered by their own doctors. After a couple of hours reading here I am much better informed. Thank you to the doctor and to those who respond and also to everyone for asking all my questions for me.

I am about to do the 24 hour urine test - which I call the bucket test - for the third time. But this time I will really pay attention to the results. 2 years ago it showed too much calcium excreting from the kidney. Noone bothered to tell me this at the time!
Today I was told that the possible treatment is to take blood pressure pills which have the side effect of reducing calcium. this would be for life. Does anyone else do this?
Please tell me what does KUB stand for?
Also - are there any problems with having the IVP test done regularly? How can we best keep aware of any stones growing in the kidney when X ray and ultrasound seem to be so unreliable?

thankyou all and best wishes to everyone who is struggling with this condition

PS my first two stones passed normally and the third was as big as a kidney bean but passed two days before I was due to be operated on. Ghastly pain for months but the exit from bladder to outside world was surprisingly easy - like popping out a champagne cork.

[UroDoc]

Glad you found this forum helpful. KUB stands for Kidney, ureter, and bladder, it is what the xray tech is suppose to aim at and get on the film. I can't see non calcium stones. An IVP on a regular basis should cause you no harm, in the US we would tend to use a non contrast spiral CT scan. You should feel better once your stent is removed, good luck.

[birdsong]

thanks so much for your prompt reply.
I am still processing all the information I found on this site.

Have you heard of anyone else being prescribed blood pressure pills in order to stop the calcium excretion from the kidneys? I am very cautious about embarking on a life long drug regime. Also from this site I see people who have multiple regular stones and I have had only 4 - although the last two fairly big(I haven't been told the size but that they were too big to pass normally.

Last question - how easy is it to get the Kidney stone handbook? It's not showing up on amazon except for the US site and only second hand. The web site for the book gives details of how to order on line but it doesn't look like a secure site for sendinbg my credit card details. Is the book still in print?

thanks again

[UroDoc]

Blood pressure medications can be very helpful in managing chronic stone disease. If you haven't tried lemonade you should, it will increase the citrate levels in your urine which inhibits stones. Not sure about the handbook, sorry

[birdsong]

It is very interesting monitoring my fluid intake - I seem to be drinking about two to three litres of water every day - then tea and lemonade on top. But as soon as I relax my vigilance I find it drops dramatically. Most of my friends hardly ever touch a drop of water. I wonder why it is so hard to keep it going? Do other people find this?
For my long term health I know I must drink a lot every day - and even in the middle of the night according to my doctor as this is a prime time to get dehydrated. I am very willing but find it strange how hard it is to remember when you are not actually thirsty.
BS

[UroDoc]

your friends are not stone formers, it can be tough but the longer you do it for it will become natural or a habit, good luck

[JoesMom]

Yes, my son takes Amiloride - a form of a thiazide type diuretic I think, which is technically a bp medicine. He takes one every day to flush out the calcium from his body. No side effects really but he drinks at least 1 gallon of water a day. He has been on this for 4 months and the doctor has told us, maybe 4 more months, 4 more years, or life.

[birdsong]

My story is as described above. I am now into my third week with a stent in place after a uretoscopy and lithotripsy to blast out a very large stone blocking my left kidney. In common with many others i have discomfort from the stent and a great deal of bladder irritation - from the stent or from the operation and the catheter i don't know. I am looking forward to the removal in two weeks of the stent.

However..I have just had another IVP and it showed up two further stones in the pelvis of the kidney. I don't know yet how big nor if they are remnants of the original stone or 'new' ones that have been flushed out by all my drinking.
does anyone have any opinion on what to do next. is it best to have another uteroscopy and lithotripsy? Will the stent have to be replaced for another four weeks? Would it be better to remove stent and allow stones to come down on their own? I presume they can't go anywhere at the moment with the stent in place.

As is so often the case I can't get much sense out of my GP and i have to wait to see the urologist - but I'd like to be prepared with questions and any advice would be much appreciated.

It is three weeks since my op and i am still off work and feeling quite porly because of exhaustion and the awful irritation in my bladder.

thanks

BS

[LindaP]

Wow, do you know why they're leaving the stent in so long? I had mine in for less than a week, then the remnants from the litho came out immediately following it's removal. Within the day. I had surgery on Tuesday and got my stent out Friday. I just had a monthly follow up and everything is gone! Just curious why they're leaving it in so long. I wonder if it's b/c you're seeing a GP and not a urologist? Mine was done with a urologist. I would seriously ask why it has to be in so long! They are awful and I'm sorry!

Linda

[carolh]

HI my name is Carol I am 45 and have suffered with kidney stones since age of 19. I have been to Chicago to see the "worlds best", he helped alot. I think last count was 75 stones left and 26 right kidney. If you can stand on your head it really helps alot! Take it from me it really does work. My quality of life is terrible**** somedays just want to die! I wish you luck please try my method I guarantee it!!! GL Caro