View Full Version : Curiosity & Kidney Stones
12-19-2012, 03:02 AM
First off ill start this out by saying, that I have many renal issues...that being said leads into my curiosity about kidney stones.
For almost 5 years I've had non stop stones (they tell me it's attributed to extremely high uric acid, low citric acid & high calcium levels in my urine). I've been on renal stone preventative diets, I've cut out salt & high protein foods, I've upped my citric intake (including being on citrak). I have been through more cystoscopies, uteroscopoies (sp), lithotripsies & stents than I can count. Right now my going rate at most a month and a half (fun, I know). However, there's something odd that's got my attention.
I've had stones of all shapes and sizes, in both the right and left kidney. However, for the past 6-8 months there has been two "stones" in the same location despite all the procedures, and every ultra sound they increase in size. I know Sometimes repeat lithos and flushing is needed to concur those stones, but looking at yet another on the 27th (over the 5th go round with these two) shouldn't they be moving/diminishing, doing something besides staying where they are and increasing in size?
It didn't strike me as odd until the very large stone I also had in the same kidney is now gone from the last litho, but these are not.
My doctor has begun to become overly concerned but fails to tell me why. He's even given me his own personal home number incase anything "happens" when he's not on call or he's on vacation (which the last litho he actually came back early from vacation so he could be present). I'm hoping its being overly cautious due to my lupus related renal problems-but he's just my urologist not my nephrologist & I can't help but feel like I'm not picking up on some missing puzzle piece. None of this really hit me until we were in office yesterday for an ultrasound (I'm at unsafe level for cts/X-rays/mris) when the usually bubbly tech who tells us then & there what she sees first gasped and covered her mouth and said "oh. My. God" but she wouldn't tell us what, then as I was getting dressed she grabbed my hand & looked at both my husband & I and said "I'm so sorry". Neither of us understood so I asked "it's more kidney stones right" and she replied wearing the same grim face "oh there's stones honey but..." And trailed off. I asked her what but what meant and she informed me she would be giving my dr the report as soon as he got out of his meeting, she thinks he should have it before he left for vacation. My husband asked what I thought it was about-I honestly had no clue. Then about 8pm well after the office was closed a nurse called me and told me I need to come in the 26th to see his partner (whom I don't like) I asked if I could wait till my reg dr got back in office & she told me he wouldn't be back till the 7th and he doesn't want me to wait. And that he's noted another litho possibly for the 27th. Unhappily I agreed. Before hanging up she told me to monitor how I feel, and if anything seems off call the office right away that his partner will be in all week.
It's a bit unsettling. But really the only thing I've noticed is the pain from the us (normal for me) and prior just the normal large amount of blood in my urine. No pain like when I've had polynephritis or renal reflux etc. heck the stones aren't even really bothering me!
Anyways it's a lot of rambling, but like I said my suspect is the two "stones" and I'm wondering if other things can appear to be stones that really aren't?
12-20-2012, 06:09 PM
I haven't a clue about the stones. I've been fortunate in that most of my kidney issues are infrequent, and minor in nature. I do know that my f-i-l used to get stones all the time, and a few were rather stubborn, but never as bad as what you describe. I cannot comprehend why you were treated the way you and your husband were. That's incomprehensible for me, for you to be "left hanging" with an "oh my ~god~" comment. Either say NOTHING or tell me EVERYTHING. None of this inbetween mamby pamby b.s., ya know?... Just my opinion, but I don't think I'd have that office do another test for you. We're praying for you and your family.
12-20-2012, 07:04 PM
What is wrong with that ultrasound tech? I would have sat down on the floor and refused to get up till someone told me something useful after that.
I am sorry you're dealing with this, and I have no idea about anything about kidneys, but I got my fingers crossed for you that if it is anything, it's something easily taken care of. Hugs!
12-21-2012, 07:40 AM
The office is usually fantastic, I love my physician there (and dread the day he retires) but he usually keeps me in the loop-as does his ultra sound tech, which is usually great because no body liked waiting. But your right, it was wrong for her to do it-being the patient if your going to say something I should have a right to know!
However my hesitations to be "blasted" again (really why I would like this solved-I'm tired of going through it lol) I'm calling today because I've begun running 103-104 temps that Tylenol isn't killing & getting horrible knife like pains in my lower abdomen (which is shockingly a new experience). The most frustrating part of all (I'm venting sorry everyone!) is Wednesday I had an appointment with my neuro (I have uncontrolled seizures) and almost all anticonvulsants he said I can't take due to my ckd & renal impairment and the others you can't take with kidney stones! So my combo anticonvulsants that seemed to be helping has now been dropped to one since another bout of the stones. It's like your damned if you do and damned if you don't!
12-21-2012, 03:47 PM
Wow tater... the "baked" part of your online name is most appropriate. You do have to control seizures tho. Kidneys can be replaced or substituted, while the brain is rather "unique", shall we say. They may have to re-evaluate your situation. I'd call the doc's *now* (pick your favorite one, I guess), and get ready to head for the ER for a Christmas party. A high fever that doesn't come down with tylenol isn't cool to do with your other symptoms...
My f-i-l usually felt the "knife in the belly" from his stones. His would come down and get stuck in the ureters just above the bladder. They tried "zapping" his one time, and damaged the ureter on his right side, so he wouldn't let them do it again. Maybe that's what the tech's comment was about, was something along those lines. Hope you get to feeling better place, and fast. But call the doctor now...
12-23-2012, 06:13 PM
As soon as the offices opened at 9 that day I did call my pcp and my urologists office because they pain became unbearable. Both told me to go to the Er-my urologists partner was in surgery all day so there was nothing they could do. My pcp was doing morning rounds and actually waited in triage to make sure I came in. A Christmas party was right! We were in for about 9hrs. They got my fever under control & pushed several bags of iv fluids because I was extremely dehydrated (I have a tendency & prob explains part of the pain). It was a bit frustrating-they were jammed pack & the doctor I got was one I'd previously had with my last bout of polynephritis back in October-whom insisted there was no infection & absolutely no blood in my urine (which hasn't been for years). The next day my urologist called directly to get those results & low & behold I had large blood in my urine, WBC through the roof & my urine showed signs of a bad infection. So instantly my husband was frustrated & disappointed. Thankfully though 2hrs in we had a really good nurse take over (who actually got another er dr pulled to my roommates case because the doctor I had was going to discharge her when her lab results had too proven she was severely dehydrated & bp was astronomical-we were hoping shed switch us too because this doctor is extremely familiar with lupus & had caught lung issuers with me a few months earlier by chance, but no such luck) about 4hrs in my dr came back and said my ct was normal, no stones, my urine was great and a normal WBC. My husband questioned him because on Monday my ultrasound showed multiple stones because they pulled it from my urologists office and told us when we first arrived. The doctor became frustrated and insisted the ultra sound must have been "faulty". So we waited for our discharge. Another hr passed they brought more fluids which we thought was odd, then our nurse came in and gave me a urine strainer & told me I had to use it any time I go to the bathroom to see if I could catch any stones. Puzzled my husband asked her why if there were no stones & we were getting discharged. She looked extremely confused and told us that as far as she knew I was going to be admitted, my WBC was high & I had a lot of blood in my urine. That they believe it's the kidney stones & poly nephritis with renal reflux. They were waiting on the ct because the results weren't in yet when shed just checked moments before! This is when my husband got mad-he told her what the doctor had said and then the nurse in turn got mad and unbashfully called the doctor an "arrogant sob".
Anyways the other fun part was when I'd come in my spo2 was at 85ish, at about this time it began dropping into the low 70s. My nurse said she was trying to get the doctor to order oxygen & get a chest X-ray, neb treatment etc because it wasn't good. She did some more things and we waited hours. Nothing else was done. Finally the doctor came back in and asked me if I'd ever had ovarian cysts, about my menses etc. i told him no & all that was as it should be. He replied "we'll since you just had polynephritis in October I don't think you can have it again. I haven't gotten the ct report but I'm going to set you up in another room for a gyno exam and send you for an us, I think that's where our problem lies" now I got mad. I asked him how my ovaries would cause the same pain I was now getting in my back and upper rib area, how it would cause blood in my urine. He stumbled and kept repeating "you've had this pain without stones correct?" And I kept repeating NO! I refused the exam and he said "we cant fix whats wrong with you here" and marched out & never came back. By this my spo2 dropped a steady to 67-69. My nurse still concerned, checked the wires, placed it on my husband, herself & other hand/feet to make sure it was accurate. She said she was going to push again for oxygen & if I was sent home I'd need to be on it. Eventually she came back frustrated and told us he was discharging me. No antibiotics, despite a dx of kidney stones & polynephritis, no oxygen, not even pain medicine. She was sympathetic and told me too push, push, push fluids; strain my urine, keep an eye out for passing out or bluing & to call my urologist as soon as I get out-to call their answering service because this can not wait. She told us if I get worse to go up north to their Ers such as Rush or St. Alexian. So that was that. On our way out my roommates husband stopped us, hugged me and told me he'd be praying for me. I told him I was glad his wife was at least getting help now. He told us he over heard everything & I needed to call the head of the hospital & to make sure I fill out my survey when I get it in the mail.
So that was that. Now I'm just hanging in waiting till my appt on the 26th :-/
12-23-2012, 06:29 PM
Another great part I forgot to mention was when they were suppose to be giving me zophran for the vomiting the tech told us after he injected it that oh he also gave me tramadol (which my neuro just took me off of) right as my nurse walked in and she reamed him a new one, informing us not to allow ANYONE to give it to me, that with uncontrolled seizures it can cause me to go into a fit of seizures. Which ironically is exactly what happened in October after they gave me a mega dose in the er with that same dr! So I'm a word frustrating!!!
I would call them first thing and tell them that I am comin in for a copy of my records and to have them ready. If they are not going to tell me what is going on the. I can dang sure find out on my own! What they did is complete uncalled for!
12-26-2012, 05:06 PM
I hope that you are getting some answers.
I think that I might know why the docs mentioned seeing a gyno.
My daughter had a lot of the same sort of pain with endometriosis.
I'm wondering if they are looking at the possibility of an ectopic pregnancy too?
Let us know what you find out.
12-26-2012, 05:36 PM
No matter what's causing the issue, your O2 levels were way too low. Where is this St. Alexian so that I can avoid it? - tic... It's bad enough being sick, to be getting bounced around like that. Hopefully, someone on your medical team can step up for you, or it might be time to start "firing" people. Your "escapade" reminds me of the time I went to the ER after falling off of a ladder, and holding my right side, the admitant clerk asked me "What's wrong with your left side?" That "left side" followed me the whole night, from lab, to xray, to treatment room, etc., in spite of my "RIGHT SIDE!!!" protestations...
12-27-2012, 04:25 AM
Tgal: I most certainly will once the medical records open up from the holidays. I learned early in the game, the best keeper of your medical history is yourself. I have a personal binder of all test results I've had done that I take with me to appointments-which has helped tremendously
-magistramarla: thank you, I myself have pcos & have had cysts & fibroids. I'm pretty familiar with gynecological pain. Since discovering I have APS my gyno keeps a pretty close eye on me (actually whom first suggested I had an autoimmune disease after my second appointment with him) and we go in for hcg testing/us every month (have had etopoic I'm the past along with multiple miscarriages) because we've been trying for about 18 months to get pg with no luck so far.
Jmail: they were the lowest I've ever had but didn't realize how low until recently. Supposedly your not suppose to be discharged if your below 90. None too comforting, because I have a lot of lung involvement and history of PEs. St alexian is one they suggested, not where I was-I've been in the past it's actually a pretty decent hospital! My pcp usually does a bang up job at stepping up. He's told off more ER drs than I can count honestly lol my husband & I think that's why he waited there for us so they'd take it seriously. A few trips before an ER physician had discharged me under the dx of constipation when actually my kidneys began to go into mega failure & had to be started on dia in the hospital by my pcp. One of the many times he's reemed someone out! Lol I'm sorry that happened for you, Unless you hit a great one, ERs seem to only be good if your shot or having a heart attack! Lol
My appt got bumped to tomorrow, fingers still crossed we get answers. The pain has only gotten worse over the past few days & I'm about to go out of my head! :-/
12-28-2012, 03:57 PM
I'm glad that you are very aware of what is going on with your health.
I hope that you found out more today and asked lots of questions.
Please let us know.
12-28-2012, 11:39 PM
I dont know how aware I am lol but I guess when any of us have a variety of pain for an extended period of time, we start focusing on the "types" of pain. At least for me it helps me in knowing what's hitting when. But you are right, it would make very much sense to suspect gyno issues. I also forgot to say that I'm sorry your daughter had to endure that, I have heard it is a very painful thing : (
My appointment with his partner wasn't very productive. He doesn't like dealing with sle patients and told me he didn't want to mess with me & to call my reg dr once he got back. And that with my ckd, seizures & stones that "it must suck. Your just going to have to ride it out for now" In regards to pain control. The only thing he attempted saying after I asked about having Uric acid stones-my kidneys are also always filled with gravel-if the gravel could be causing the pain. He sat dumbfounded for a min and replied "you know, since you have lupus, maybe the lupus is pinching a nerve in your kidney. Yeah that would make sense, I'm going to write that in the report I send to your primary"...yeah word for word lol but the nurse called tonight & left a vm to call back Monday about a lab result & they needed to talk to me. Not sure what that's about, but I guess Ill find out when Monday comes!