NEW TO WEBSIGHT-NOT NEW TO CYSTINURIA

[dbrownen]

I HAVE BEEN HAVING STONES SINCE I WAS 20. I HAVE HAD MULTIPLE & MULTIPLE LITHO'S, STENTS, IVP'S, AND UA'S SINCE MY FIRST STONE. I HAVE NOTICED THAT WHEN I HAVE HORMONAL CHANGES, PRODUCTION OF STONES INCREASES. IN 1991, I GOT PREGNANT WITH MY FIRST CHILD, I HAD MULTIPLE STONES THROUGHOUT THE PREGNANCY. AFTER MY SON WAS BORN(9 1/2 LBS & 22 3/4 IN LONG), I BEGAN HAVING SEVERE BACK PAIN WHICH RADIATED DOWN MY RIGHT LEG. I WENT TO THE DOCTOR IN WHICH HE PERFORMED A KUB. AFTER THE KUB WAS TAKEN, THE XRAY TECH CAME BACK INTO THE ROOM AND ASKED ME TO REMOVE THE BUTTON OR WHATEVER I HAD ON BLOCKING MY RIGHT KIDNEY. FINALLY, I GOT TO SEE THE DR. & WE FIGURED OUT THAT WHEN I WAS PREGNANT, A STONE HAD FORMED IN THE UPPER PART OF MY RIGHT KIDNEY, BLOCKING IT OFF AND NOT FUNCTIONING. I ALSO HAD A HERNIATED DISK OF L5. I HAD TO MAKE A CHOICE AT THAT TIME WHICH ONE HURT WORSE BECAUSE I COULD NOT HAVE BOTH SURGERIES THEN. I CHOSE MY BACK BECAUSE I HAD A 4 MONTH OLD AND COULD NOT EVEN HOLD OR WALK WITH HIM BECAUSE OF THE PAIN. AFTER HAVING SURGERY, NOVEMBER CAME AND I HAD THE STONE SURGERY. MY DR. ENDED UP CUTTING ME OPEN ON MY RIGHT SIDE AND OPENING THE KIDNEY AND REMOVING THE STONE WHICH WAS THE SIZE OF A SOFTBALL. IT HAD BEEN IN THERE SO LONG THAT NOW MY KIDNEY IS DEFORMED AND MY URETHRAL TUBE HAS ATTACHED TO THE SIDE OF MY ABDOMINAL WALL. LIKE I SAID, I HAVE HAD MANY, MANY STONES. I HAVE NEVER HAD ANYONE TO TALK TO. MY HUSBAND DOES NOT UNDERSTAND THE PAIN & SUFFERING I GO THROUGH WHENEVER A STONES FLARES UP. I WAS SICK SO MUCH AT ONE TIME, HE ASKED ME IF I WAS EVER GOING TO GET WELL. I HAVE TRIED PENICILLIMINE AND HAD AN ALLERGIC REACTION. I TRIED TO GET ON THIOLA, BUT NO PHARMACY AROUND THE AREA COULD GET IT. I WOULD LIKE ANY INFORMATION THAT MIGHT BE HELPFUL FOR ME. I'VE TRIED ALMOST EVERYTHING FROM DIET TO MEDS WITH NO RESULT. I WORK FOR DR'S THAT HAVE NO INSIGHT ON THE DISEASE. PLEASE RESPOND WITH ANY ANSWERS.

DBROWNEN
:confused:

[Matt Lewis]

dbrownen,
1st off, welcome to the forums. It's great to have you with us.
I'm sorry to hear about your hardships with cystinuria, and can honestly say that in my limited experience, i have never heard of anyone having a stone that large. It is unfourtinate that you had to prioritize with your surgeries, but sometimes that's just what needs to be done.

As far as information that might be helpful for you, i can offer a few bits of advice. 1st, regarding the thiola, please visit the main page www.cystinuria.org, and check out the red outlined section on Thiola. It is supposedly available if you can have your pharmacist and physician fill out the apporpriate forms (linked from the above page... let me know if you have trouble finding them). I suspect that the FDA and Mission Pharmacal (makers of Thiola) will have the problem causing the shortage solved rather soon, but one can never tell for sure. Until then, following the directions in teh .pdf file linked on the main page is your best bet at getting your hands on some.
Second, it is very important that you find a good physician. Preferably a specialist... someone like a nephrologist. Unfourtinatly our "locate a physician" forum is still in it's infancy. However there is another website on the internet, www.cystinuria.com, that houses an e-mail group that might be able to help you track down good care local to you.
Next of course is your personal management of the disease. A good thing to do would be a 24 hr. collection (set up and analized by your physician) to tell you just how much cystine you are dealing with. If you can push your cystine mg/L under 300, you should be in good shape. It is important for every cystinuric to determine how much cystine they are dealing with so you can set goals, such as drinking 3 to 4L of water if your 24 hr. collection were to say that you had a cystine concentration of 900mg/L, and you were currently urinating ~1L (drink 3 to 4L of H20 and your ratio of cystine to urine will drop accordingly).

Those are a few good 1st steps that i could see benifiting you greatly. I'm not sure what your exact condition is, or if you've already tried them, so i apologise if that is old news to you. If you have any specific questions, i encourage you to go ahead and post them in the main forum where you're more likely to get responses from a larger number of people. I hope some of what i've said here will help, although i'm far from answering any questions. If some of this made sense, let me know in the main forum and we'll go from there!! :)
Thank you again for joining the site. I'm very glad to have you here as a member. As for your husband, i can only hope that by education about your disease, he will come to be more sympathetic. It is hard for non-cystinurics to understand exactly what those with the disease go through; i myself am not a cystinuric, and i do not claim to have the 1st clue what it is like to be one. However, in understanding the disease, i have found that i can at least communicate with Kathy about it, and offer her support when she needs it. It can be hard to see someone you love go through so much pain. I wish both him and you only the best.
Kind Regards,
matt

[CRYSTAL]

I am so sorry to hear of your complications with kidney stones! I hope you are feeling well at this time! I know how depressing it can be when you feel like you are ALWAYS sick. My husband is very supportive (out of sheer awe over the size of the stones I've dealt with - although none have been as big as yours!) and I've learned to lean on him at my weakest times, so I pray that your family and friends will rise to the occasion and surprise you next time! (That's one of the negative things I've learned about this type of stone - there is always a next time, unfortunately.) At one time in my life, while I was busy having babies, I ignored the pain and convinced myself it would go away if I was determined enough! I was wrong, very wrong! However, educating myself about the disease has definately gave me more strength to fight it and this website has been such a blessing! It is really frustrating though when you are forced to visit doctor after doctor and none of them have much, if any, experience with your specific illness. And the whole trying to find the medicine at your local pharmacy problem really upset me too! After my allergic reaction to Thiola I swore not to take any more meds but I've resently started on Urocit-K to bring my PH up and so far have had no problems with it. You might want to check into it?! I must admit though that I'm scheduled for surgery (litho) again next month, so I can't say that it's helped at all.

Anyway, I wanted to let you know that you are welcome to complain here anytime and know that we all feel your pain!

Sincerely,
Crystal

[dbrownen]

I thank you for replying to my welcome note. I hope your surgery goes well. Just out of curiosity, when you were pregnant, did you think you had more problems or did it get better? It seemed for me that the 2 times that I was pregnant or had any hormonal problems, my stones seemed to have gotten worse. It may be nothing just checking into it. I work for 3 family practice physicians, 1 physician assistant, and 1 nurse practitioner, none seem to know of the disease. One of them in particular said that all I needed to do was to drink water all the time. Been there done that and nothing seems to work. So why should I drown myself with all that water and get no results, huh? Just wanted to let you know that I appreciate someone to chat with about the same problems I have.

Thank you