Best Treatment

[JJ]

I had a stone removed June 12 (1 centimeter) and have been having this surgery every 2 years sine 1998, and every 3 or 4 years prior, going back to 1990. I lost most of my left kidney due to a stone in 1991. My urologist prescribed Urocit-K for many years, but my potassium became high and he switched me to Poly Citra (3 ts. 3 xs a day). During the stent placement for my last stone (May 24) my potassium was 5.8 and my nephrologist told me to stop all medicine and aim for 3 liters of urine per day. My urologist is skeptical that this will prevent stones. Currently I am working on the hydration therapy (water with lemon juice) and trying to moderate my animal/dairy protein. Can you advise me how to make my urine more alkaline. I believe my goal would be 7.0 to 7.5. Today I tested at 6.8.
Also, do you know where I could find a list of cystine levels in various foods.

My first stone was in 1957 when I was a teenager and I was told it was composed of calcium and phorphorus. I had no other stones until 1990.
Can you offer any insight into why I began making stones again and they were cystine?

Thank you for your help.


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[DAVIDGOLDFARB]

oops JJ, sorry for the delay...I did miss it...
I understand the issue with potassium; you and your nephrologist might tolerate SOME degree of high potassium ("hyperkalemia") but everyone has to figure this out with a doctor. I would say that most people in your situation are not going to have a normal potassium and every nephrologist and every primary care doctor is going to vary on how high they will let it go without getting freaky. It depends on your stability, your reliability, your creatinine, your other meds. It's a very frequent topic of discussion nowadays in people with chronic kidney diseases of many sorts. One choice that sometimes works is to use sodium bicarbonate or sodium citrate instead of potassium; you read here about people using baking soda which is simply sodium bicarbonate. Potassium citrate or bicarbonate are preferable because the sodium can increase citrate excretion but if the sodium lets you get to a higher pH I would prefer that and accept the sodium load. You don't mention taking Thiola and if I had one kidney, problems getting alkalinized, surgery every 2-3 years, that's what I would be doing. If you have had problems with it in the past, you might not want to, though you could be desensitized, but if you haven't had it, now might be the time to bite the bullet. It's not that bad!
Best wishes,
David

[DAVIDGOLDFARB]

Also, do you know where I could find a list of cystine levels in various foods.

Matt did well; try this too: http://www.nutritiondata.com/index.html


My first stone was in 1957 when I was a teenager and I was told it was composed of calcium and phorphorus. I had no other stones until 1990.
Can you offer any insight into why I began making stones again and they were cystine?:

interesting; wouldn't you like to have that 1957-vintage stone and see what it was really made of? Don't be sure that they knew what they were doing. They may have been doing a chemical determination instead of using x-ray crystallography or infra-red spectroscopy. ---David

[JJ]

This is really special. I appreciate all your good information.

My nephrologist never mentioned Thiola, but focused rather on D-pennicellimine (sp?) and rejected it as being too toxic. He wants me to maintain 3 liters output a day. On my own, I have begun lemonade. I read that two different studies at Duke and U. of Wisc (my alma mater!) found that drinking lemon/water or lemonade mix was as effect in alkalizing urine as potassion citrate. I just got the PH stripes and plan on testing this out.

I tend to be very medicine-sensitive, if not allergic, so I would not embrace Thiola easily...you know, just swallowing the first pill :eek: But I know your adivce is good and I will discuss it with my doctors.

I can't tell you how much this website means to me and the opportunity to discuss this disease with those familiar with it. My doctors don't have any other patients with cystinuria, which, of course, is not uncommon.

Thank you.
JJ