New Member
 

Hi
My name is Les, I am 55 years old, and waiting to go in to hospital for my 20th operation. I must admit this time I was totally unprepared as I have been taking bicarbonate of soda tables for about 18 months. Six months ago when I had an x ray there was 1 stone in my left kidnye left from a previous operation. Then two week ago I had my check up x ray and there are 4 stones!!
I am now open to suggestions .................
Does bicarbonate soda work?
Does diet?
Any helpful alternative suggestions would be welcome and of course anybody in the same situation could be nice to chat.

Les

Welcome Les
 

Hi Les, I notice that you live in England, like myself. I live in the Essex area.

I have posted quite a few messages so I don't want to keep repeating myself, but my brother who is sixty two and myself who is fifty nine years old take a drug called D-Pencillimine which keeps us stone free, I was first put on this drug at St. Bartholomews Hospital, London in 1963, when I was diagnosed with Cystinuria.

When I first started to take this drug my right kidney was full of large and little stones and I managed to pass them all without surgery.

I stayed stone free for twenty eight years and then made two small stones in my good kidney which I managed to pass, and the Doctor's then increased my dose of D-Pencillimine which has kept me stone free since. My brother has stayed completely stone free whilst taking this drug.

I know a lot of people are frightened of the side effects of D-Pencillimine, but my brother and myself do alright on it, my Doctor at Barts said what is the worse of the two evils (stones or the drugs) we both thought stones.

Both my brother and myself have had a fairly good quality of life since we started taking D-Pencillimine, before that we was both in and out of hospital many times.

Hope you get on alright.

Regards Mojo

Re: Welcome Les
 

Hi Mojo

It was at St Bartholomews that they first diagnosed me with cystinuria, many years ago.
Unfortunately I cannot take D-Pencillimine as I am allergic to penicllin, which I did not realise until I had started D-Pencillimine.
While they tried to get the dose right I was in hospital for six months but as they got us up to the correct dosage I had a allergic reaction and had to start all over again. This was not successful so now I take bicarbonate of soda and captopril.
Looking and reading the letters of this organisation I am surprised at how many people suffer with cystinuria and it comforting to know that I am not so alone.
I used to have to travel to St Bartholomews from my home in Peterborough for treatment then was transferred to the Halamshire in Sheffield (hope you never get transferred there!) and now I have my operations at the Edith Cavell in Peterborough. Which is nice for my wife for visiting.
I had hoped to get some alternative ideas to help prevent stones as I am open to suggestions. I have tried varying my diet with no success and I was reading one of the letters about lemonade. I might be clutching at straws but it cannot hurt to be optimistic.
My sister had to have a kidney removed because of stones, but ass yet none of my children or grandchildren suffer.
I am pleased that you and your brother have a good quality of life. Has it affected your work? I find that now after surgery it is taking a liitle longer to recover but saying that I am normally back to work within the month.
Best regards

Les

Hi Les
 

It is such a same that you could not take the Pencillimine, as far as I know that is the only drug that seems to prevent and dissolve Cysteine stones. I was in hospital for three months while they got me on this drug.

I have been very lucky as I have never had an operation, I managed to dissolve all my stones, so it has never affected my work. My right kidney has packed up because of all the stone damage, it is still intact though, but does not cause me any trouble at this moment.

The only way that this illness has affected my work was all the hospital appointments and tests that you have.

I have also had three children whilst taking Pencillimine and I am happy to say that they are all ok.

My brother was being treated at a different hospital to me, and they did not believe in treating this illness with Pencillimine, anyway he made three large stag horn stones which he had to have removed surgically. Then he made another stone which got stuck in his urethea tube, but luckily for him he was in the process of being transferred to St. Bartholomews and was due to see the Doctor that day, they removed the stone in his tube surgically then he was put on Pencillimine, and has remained stone free ever since. So this illness does not affect his work either.

Your children and grandchildren should not suffer with this illness, as they can only be carriers of it, unless your wife is a carrier, that is most unlikely. It affects 1-7000 people approximately. Arn't we the lucky ones.

I do hope someone on this forum can help you with some alternative ideas to help you prevent more stone formation after your next operation. I am sorry that I can not be of any help to you due to our different treatments.

I wish you well.

Kind regards Mojo

Is sodium bicarb bad for us cystinurics?
 

Hi there, My name is Angel and I am 40 years old with Cystinurua since I was 10. I was taking sodium bicarbonate as well for all of my teen years and 20's. I had the worst stones during this time of my life. After I quit taking it, I now pass sand and tiny stones and or fragments. I also haven't had a surgery in 8 years. I have had 1 successful Lithotripsy though, but it was a piece of cake compared to open incision operations.
Anyhow, my point being that my stone formation has taken a nose dive since stopping sodium bicarbonate. I am not taking anything else either. I am
scheduled again for a lithotripsy on Jan. 9th 2006 and it is only on one stone found in my upper pole, right kidney. Needless to say, this is amazing for a previous chronic stone sufferer as myself. The stone I have now is 1.9 cm and it's a staghorn, so it has some jagged growth protruding out from it, hence the horns=staghorn.Anyhow, I havent had a lithotripsy in 5 years so that's awesome as well. All I have changed is my diet. I eat no extra salt on my food. I eat a low salt diet along with low meat, and very low protein diet as well...low sugar too.
I drink coffee with milk 2x a day and push some water throughout the day.
I also have juice sometimes, but nothing more then the water. It takes prescedence over all...I don't drink soda, alcohol or beer either. Just the coffee(dbl shot espresso in milk) and/or juice...always water back.
I have been told that salt can cause more stone formations and or faster formations.
I hope this helps in someway!
~Angel~

Welcome Angel
 

Hi Angel and welcome.

Kind regards Mojo

Hello Angel & Mojo
 

Hi Angel
Thanks for your letter I think it works they other way with me up till I started taken Sodium Bicarbonate I was passing stones every 2 week's, But the last two years just the pain and the occasioanal passing of stones (but that will all change in 18 days as I go in for a operation to remove four stones from my Left Kidney).

But I will take your e-mail to my Dr and see what he has to say.

All the best
Les

P.S
Hello Mojo and have a Merry Christmas

Hi Les
 

I hope your operation goes well and that you are fully recovered for the Chriatmas Holidays.

Wishing you and all your family a very Merry Christmas.

Good luck.

Kind Regards Mojo