[livingwith]

For about 5 years now I have been have what my dr. said were mild uti’s –HA mild my … well 3 weeks ago i had such huge pain on my right side I had my husband take me to the ER at 3 am! Turns out I had a 9 mm stone stuck!
When they did the scan and the oncall urologist saw it he said “Wow your what we all went to medical school hoping to get to treat” wonderful! turns out that in addition to the stuck stone I also have 9 various size stone in my right side and —...Read the full article

[lioness]

I have only been a kidney stone(s) sufferer for two years, but its been the LONGEST two years of my life.

My problems are that first my stones NEVER pass. . my stones (I have done a lot of reading on the stones I have) when analyzed were all infectious which were hydroxyapatite (all struvite, the triple phosphate stones, magnesium, ammonium, & phosphate(MAP)), I keep getting recurring UTIs (3 different bacteria - one urease splitting bacteria which causes the struvite stone material which branches out into the collecting ducts of the kidney (they are called "staghorn calculi" because of their deer-like horns of a "stag"), 4 metabolic urologists who have all left urology so I have to deal with "doctor in a box" for two years being that my treating urologist did complexed stone surgeries as well and was in charge of the one year residency program, 1 being an endocrinologist who has left, & now I just saw my new treating urologist who actually offered to do lasertripsy (the only stone treatment I havent had done) he said my stones dont pass. I almost fell off my chair i was so shocked a urologist who actually agreed with me. . The endocrinologist did the most for me & actually answered my questions and did what I asked him to do. Had he been on my case in the beginning I dont think I would have had the problems I had. . . He was my only hope and he returned my phone calls, a doctor who actually picked up the phone when I called. He told me that my case was interesting and would be brought up at the next urology meeting. .I asked him what makes my case so unique. He said that my stones are "rare". I said I know. I have read about them. I have read 2 kidney stone books as well as UTI books, key word being "read" since my urologists after the first surgery werent forthcoming in telling me about the kidney stones I have. I had bilateral PCNL, 2 ESWL's, 2 uteroscopies and when I get back from my vacation in Jamaica that I have in two weeks I have an appointment with my new uro to discuss the treatment options for my stones in the right kidney. . . that are in the kidney not renal parencymal where the stones are in the left.

The stones that I have recur and are difficult to remove. and I continue to have persistent alkaline urine which doesnt seem to concern my urologists.

There's no guarantee that my new urologist will stay. so I am changing HMOs. I have been talking to my dad's urologist who was perplexed at why they didnt do a metabolic workup, 24H urine analysis, and f/u urine cultures. All they did was keep me on low dose antiobiotics and didnt check my urine for the urease splitting bacteria since my urine PH is usually high and these stones & UTIs thrive in "alkaline" urine. I didnt get a chance to talk to my treating urologist about the other possible treatment options since ESWL wasnt working. . less invasive but knowing that these type of stones dont pass, I am NOT stupid. .my stones NEVER pass, NEVER will. . no matter how much water they tell me to drink. . .

I didnt know that I would have to read about my condition in books but they have been a lot more helpful in guiding me to ask the right questions and I feel a little educated about what's going on with my anatomy not realizing how much permanent damage kidney stones can cause.

I had gotten recurring UTIs on and off for 4-5 years thinking it was just my fault. Well the stones were causing all the infections. Since my doctors had "top sheeted" my history and given me the wrong antibiotics & never cured the UTI stones kept building up down there and grew to 1-3 cm hence why I had the "key whole" PCNL surgery, which I read had a high percentage of "stone free" rate being that the urologist goes in there witha nephroscope & takes them out meticulously and fragments them with laser. Believe me he got all he could its the f/u care that I have been frustrated and angry about.

I truly believe he thought that I didnt appreciate what he did for me, I did I just didnt know that there were little stones left for ESWL treatments (my mom told me this) and there were possibilities that he would have to go back in there to get the residual fragments. and being that I had a safari trip to Africa planned I was diagnosed in May with staghorn calculi, i saw the CT scans and I was just so disgusted when I saw them. (2 years in the making and several thousand dollars invested, pocket change to my local doctors, but important to me)

My referring urologist only did one kidney at a time and he said he waited in between kidneys & told me to cancel my trip, where I was almost in tears. My new urologist did open up his schedule and asked when I wanted it done, something that amazed me since a patient usually has to work around the doctor's schedule. I did feel that I was getting the top of the line treatment under his care because he specialized in this "type" of surgery. and I didnt want him to do it if he didnt have experience doing it and had not been Board certified, which he was. so I did my homework before I decided I wanted surgery from him. I will be forever indebted to him (knowing he was only doing his job) & I was coming to him in desperation, because I was able to go on my trip.

Being that I havent made new stones is good I hope it stays that way. Its the residual stone fragments that are causing me grief and they won't go away. .

Good luck. Since this has been a real wakeup call realizing how important your kidneys are to your anatomy communicate with your doctors, had I not done this and been assertive nothing would have been done on my case afterwards. and since I didnt want to go back to my referring urologist realizing they screwed up only good thing he did was refer me out . .

I didnt realize it would take all these treatments to get the residual fragments, its been so frustrating.

I didnt realize that I would have to be near a bathroom or need a doctor so much until I was diagnosed with kidney stones. I had never had a health issue until I kept getting recurring UTIs then to find that the stones were the cause.