Got another stone...

[John07]

Had a routine follow-up appointment to check both kidneys, had my ultrasound and I now have a 12mm stone in my left kidney. I have an appointment on the 9th April to find out how they will deal with this but I feel its going to be another perc op this year...great...

Cant believe how quick this one has formed, must be about 6 months if Im not wrong between this and the last ultrasound I had.

[Donita]

John, I hate to hear/know that you've formed another stone of that size in such a short period of time. Years ago (late 90's)- I spoke to a specialist in NY, USA - when I was having great frequency in stones/surgeries (avg 2 per month in a 6 mo. period)....he indicated rather than just going in for retrievals w/all the risks that go w/each surgery - trying different ways to prevent/slow down the formations. Do your Dr's there have you on any preventatives? I ended up changing Dr.'s. IT WAS THE BEST THING FOR ME/MY CARE!! My Docs in Indianapolis, IN really tackled it - we've landed on what appears to be the right combo (knock on wood) for me. At least the frequency is nothing like it had been. If you can tolerate the meds, and work through that...it's better than another perc for a stone that size. Along w/ the x-rays/ultrasounds, have they done 24-72hr urine collections/studies? Knowing where your #'s are would seem to be vital to your care.

Keep us posted...hope u r ok / feeling better by now?
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[John07]

Hi Donita,
I recently had a recommendation from another user from this site. I arranged for my health service to see this Dr that was recommended and saw him last week. The difference is incredible, he has asked me to do a 24hr urine specimen. I was with my previous Dr for nearly 10 years and he had never asked me to do this. Im on penicillamine but he has also recommended to take potassium citrate and maybe captoril (as my blood pressure was a little high he said this would deal with stones/blood pressure at the same time). He said I could take all 3 but I wanted to see if anyone else here took all 3 as well?

Im waiting for the results from the 24hr urine sample so hopefully following the results of this we can decide on the meds to take.

Ive been referred to the xray team to have a CT scan and the surgeon said that they want to see the position of the stone and my anatomy as he said that they may be abe to go through my ureter and hold the sone in a type of basket, then lazer the stone which will pulverize it, never had this before but if it works then at least its not another perc. op and I will be able to have this done in day surgery which would be great.

Anyway will keep you posted

John

[Donita]

Hey, John - Just checking in w/you - GLAD TO HEAR that someone is looking into your #'s by requesting the 24hr collection!! That really seems logical - can not believe your previous caregiver hadn't done that in 10yrs!! Unbelievable.

I don't know about the 3 meds together...i only take 2: Thiola & Potassium Citrate. I don't know how it is for everyone....but when I first started on the Thiola (at lower doses, until I could tolerate more) it did effect my ability to taste. I basically lost that sense for 3-4 months (funny, I thought I would loose weight, cause who would enjoy eating if you can't taste it....ME. Well, I wouldn't say that I enjoyed it - I just kept eating in an effort to taste something--ANYTHING. I could sense spicy (cause my mouth would burn - but that's different than tasting!ha :p) Anyway, gradually the taste came back & gradually they have increased the Thiola doseage. Sometimes I experience abnominal tenderness (like I've been punched/bruised deep) but unless I start looking jaundus I don't get too concerned....Just increase my water / liquid consumption & it eventually gets better again. We do keep a watch on liver functions, every so often. Not sure which med contributes to it - (& hate to say so to someone....) but, very loose "stool" has become the norm too. I figure anything I can do & tolerate that keeps those stones from forming & consequently frequent surgeries is a winner in my book. Am now on my longest length of time w/out surgery & leading such a "normal" life, that people who don't know me - have absolutely no idea! Let me know how you're getting along!...I really hope BETTER!!
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[Samsmom]

Hi Donita and John
I have been following along and have a question for Donita. My daughter
also takes Thiola and Potassium citrate. She is having a great deal of
acid reflux and heartburn and believes it is due to the potasium citrate.
Do you experience this? Also, when do you take the citrate?
Thanks, hang in there this disease can be tough sometimes.

[steve k]

hi, i have been producing stones since i was 19 i am 59 now the average is about 2 to 3 stones a year..when i had my first surgery the only way to get the stone was to open you up from the back remove the stone put a tube in from the back recovery about 3 weeks with an enormous scar..since i have had aprox 50 surgical procedures from lipo to basketing etc/...i have for the past 3 years taken a pro-active approach to these stones rather then waiting until the 3am gut wrenching wait in the emergency room pain i have a ultrasound done every 6 months average of my stone formation if any stone show up i have a cat scan done..if the size of the stones indicate a problem my urologist schedules a surgical date and cleans out both sides now im sure there will be those who will say that the risks of any surgical procedure is not worth this...but i will tell you for me it has worked out just fine...

[Donita]

Hi SamsMom -

Sorry I've obviously not checked in for a while :(---- to answer your question: No, I don't experience heartburn or acid reflux. As I said b4 - the most discomfort that I may have now is abnominal tenderness & loose stool.

As for when I take meds: the Thiola: on an empty stomach (either 1 hour b4 food or 2-3hrs after eating). The potassium citrate: I think it says at meal time. Honestly, though - I have taken it at the same time as the Thiola more often than not. Seems like otherwise - I'm a clock watcher as to when the next bout is supposed to be taken - I'm not a dr - but there may be something to be said about the absorbtion of the med.... I can't remember which med it is - but one of the possible side effects of one of them is upset stomach. You may want to check further & see if it would help her if she takes the potassium citrate w/ or w/out food.

Hope all is going well.

John - you still hang'n in there?
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[John07]

Hi Donita, Im still here!! Sorry havent checked in for a while, hope youre keeping well.

Well 2 weeks ago I went to hospital for what was meant to be day surgery but ended up staying in for 3 days. While I was under general anaesthetic they attempted to remove the stone by going up thru my ureter, blasting it and taking it out piece by piece. This unfortunately didnt work as the stone wasnt co-operating and was not going to get caught!!! I woke up with a catheter which was removed the following morning. As they tried so hard to get to the stone my ureter was swollen and I was in so much pain as soon as they removed the catheter, so had to go back under and have a stent put in.

The alternative now is to have a percutaneous op which I have already been told will happen on the 24th Sep, the stent will be coming out next week hopefully.

[Donita]

Oh, John - I cringed reading your last post. UGH! Is there any other way besides another perc? How many have you had on that kidney already? I always considered the perc as a last ditch effort....but guess if there is no other option.?.?.?. I have had to have 1 on each kidney. Since they have it broken into smaller pieces is there any chance of disolving the rest of the way w/meds?

Hope all went well w/that stent? & hopefully they leave it in long enough for things to calm down after all that trauma. Keep posted - I'll be sending good thoughts your way :)
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[carolhart]

I know the feeling well... I should be in the hospital now but had enough. My right kidney is killing me and it goes straight to my knee...:eek:i hate the thought. I am so worn down.
I hope all is better with you. Best of luck.. Carol

[John07]

The stent is out now but there is no alternative way of getting this stone out. I was told that it takes more energy to form a new stone than it does for a stone to grow and they would rather take it out now before it gets really big, I mean I have had stag horn stones before so I know I am capable of growing really big ones. Im on penicillamine and just started taking potassium citrate. I think I have only had 2 perc ops on the left kidney didnt realise that perc ops would affect a kidney, does it?

[Donita]

Well, I'm not a Dr. I just remember somewhere along the way hearing or reading: that you really want to keep # of percs minimal..& I thought that I was told hoping to limit 2 percs per kidney/lifetime. Don't know if it's scar tissue or the risk of damaging the kidney that's the reason behind it... I can not remember if I was told that by my Dr OR if I read it somewhere? Sorry. Doesn't really matter though - if it's a big one & causing trouble.

Maybe if you get started in on the potassium citrate regiment it will help the crystals from forming together to produce those big stones. Does the penicillamine...act like Thiola in keeping cystine levels down? Maybe between the 2 -

Let me know how things go for ya! I'll be sending good thoughts your way.
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[John07]

Just thought I would let you know that I am now out of hospital, the perc op went well. I have a dressing over the op site which I change daily and hopefully back to work in about a week or so. I will be seeing the consultants again in about 6 weeks time and will ask them if there is any damage to the kidney everytime a perc op takes place because to the best of my knowledge no one has ever told me of any! Thanks for the kind words everyone but the stone is now gone!

[Donita]

John - Glad to hear you are free from that "bad boy"! Now, maybe w/combo of med's you'll be able to keep stones from forming to big / fast to pass?!! I sure hope so for ya!! I wish you a speedy recovery. Stay strong & positive, OK?!
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