[angelsmom50]

I have had numerous ureteroscopies w/laser litho, bi-lateral and unilateral stents. Due to the many procedures, I now have scar tissue or stricture or fibrosis (they don't really know) in my left distal ureter which prevents even the tiniest of stones from passing. My last bout was about 3 weeks ago when they found a stone in my right ureter causing the right kidney to be swollen and obstructed along with several small stones in the left distal ureter area. They went in and cleared the stones and stented both sides. Those of you who have had stents know how that feels. Along with the daily pain from the stents, I have had pretty heavy bleeding. After the last procedure, my blood pressure spiked to 200/100. I do now have BP problems. When the nurse in post-op called my doctor (got the doctor on call), he told her that I was not his patient and he didn't feel like writing orders for me to stay overnight and to send me home. Now, I did not want to stay overnight, BUT I wonder why these docs are on call? The practice I go to will not call in prescriptions after office hours or on weekends even if MY doctor is on call. They tell their patience to go to the ER if they are in pain. They act as if going to the ER is a walk in the park! You all know, it is hour and hours before they give anything for pain relief, then just send you home and tell you to follow up with your doctor!! I don't get this. Wouldn't you think that some patient's like us with chronic stones that run out of pain meds would be worth considering a different approach? My goodness, my doctor knows me, he knows I really get stones and I really have pain. So, when we decide to try to find another doctor or practice with a little more compassion, we get accused of doctor shopping. Darn right I am going to doctor shop! If this is my lot in life, I want to find a doctor or practice that will take care of my needs. I have always felt that the ideal doc would be one who has suffered from kidney stones!!! Anyway, just had to vent. I know there is no solution to this. I have almost $20K out of pocket for 2008 alone!!

[Stoneman231]

I read your story and feel your frustration.
I am 45 male have had stones for 14 yrs (4 this past 2 mths) and 5 prior.
What procedure did you have that sent your bp soaring?
I had eswl 1month ago beat me up pretty good and they say gave me a little anxiety.
My bp hit 151-96 which is crazy for me I run 120-80 .
I'm hoping they are right all the pain I endured for 2 monthes trying to pass a lodged stone near my bladder before could blast the 3 others maybe pushed my body over the limit??
Then the "doctor train" forget about it.
It's good to vent to people who are going through the same thing you are....So Vent on....
Do you think the whole ordeal sent your bp soaring or the procedure??
Thanks
Robbie

[lioness]

I am venting with you...I have only had stones for 3 yrs, feels like 10..all infectious...of course. So now I have to pee in a cup once a mo., take prophylaxsis low dose antibiotics forever until the cows come home...

I have had these darn things taken out the back bilaterally (PCNL), then 2 ESWL's, 3 URS's, now a possible 3rd ESWL or URS. I just had an CT urogram...I have been taking pain meds for 2 mos...tired of popping them like candy...but golly gee the "flank pain" is in my head and unless your uro has had stones he doesnt know why you have pain...well you just dont call him up to chit chat b/c I'm bored...I do have better things to do like maybe live a normal life!! without taking forever in the bathroom, hummmmm....

Now my regular doctor has changed whom was controlling my pain and giving me pain meds, now I have to tell the new dr. my hx. all over again. I think I'll just record it...save it for next time...like "doctor in a box".

Ever since I was little even now, I have always been afraid of doctors now I have to work with uros the rest of my life...This HMO is affordable. . and I did find a local uro who kinda believes my pain...and he wants to find out if there are stones down there...good golly miss molly...not just rely on the almighty KUB x-ray...doesnt take an MD to tell me that one...

[angelsmom50]

If I knew then what I know now, I would have documented every incidence, every procedure, etc. I have been seeing my current doctor for over five years and they still try to send me for a KUB when I call in with pain. My doctor knows that KUB's are not a good indicator for me, I need to have a CT scan, but they have this routine protocol. My doctor doesn't know one thing about me. What I do for a living, whether I have children, etc. He indicated that there might be something like fibrosis putting pressure on my lower distal ureter, but he never suggests that we try to find out for sure why I have such narrowing in that area. Same old routine, come in, pay $50 copay, have a KUB every time I have a problem. They won't call in pain meds unless I go in after having a KUB and he always prescribes 17 low mg pills. I know they have to be concerned about how they prescribe, but I have been caught so many times out of town with pain that I've had to go to the ER just to get pain relief. It shouldn't be that way. I don't like to take pills and tell myself that next time, I will get through it without any, but once the pain starts, I give in. Same with the ER. I never want to go again, but when I'm in pain, I don't have a choice. My out of pocket medical bills are tremendous. Oh well...that's my rant for the day.

[lioness]

ITA, about the CT scan. KUB x-rays arent the indicator for me, either. My former uro knew this...and then I saw the chief of uro on 4/2, what a jerk...he didnt do CT scans. So when I forced the issue, he didnt budge. I finally found a local uro who believes me and talks to me instead of at me...there is a glim of hope for us stone sufferers...if we could just get uros to believe that "YES" stones do cause pain in the kidney even though they dont obstruct or move or go anywhere... they should understand that it's like a fishbowl down there...mine will NEVER pass...so I will always need intervention...

I would be doing the happy dance if I had the same regular doctor for five years. That's my problem. They keep leaving...so I have to get used to another doctor. I don't have a PPO, cant afford it...wish I could...my parents want me to go to Mayo Clinic, but they have done enough taking me back and forth to L.A. and back for 3 yrs. I have driven 4 hrs rtrip for treatment and now just 1/2 an hour.

I am pretty well read about my case. I have had to b/c uros arent going to tell you why you have stones or what your kidneys do in an office visit. Your lucky you get your questions in b/f they're off to the next patient... I have bought 4 books. I know what my kidneys do now... Have 4 folders of all my tests, OR reports, etc.,...seen my dad's uro...he wasnt thrilled after the first surgery since there wasnt a rush to clear it with 100% infectious stones being that they GROW big but now agrees with their assessment, for now...

[angelsmom50]

So, I have made the decision to get "permanent" bilateral stents until I can find a doc who will try to see what is obstructing my distal ureters from the "outside". I've had three episodes of pain since my last procedure about 6 weeks ago. I faxed his office today because I want to have communication in writing, plus it is easier to get my message across. I asked if they would call me to let me know if they could schedule the procedure before 4/22 as I am flying out West for my daughter's college graduation, then coming back for another daughter's wedding! I hate the discomfort from stents, but don't want to have an issue while I am traveling or during the wedding festivities. They never called!! Guess I'll get on the phone tomorrow but doubt that they will be able to work me in. So they will tell me to go to the ER if I get in trouble while traveling to get pain relief, like going to the ER is a walk in the park. Perfect scenario would be to have a uro who has experienced kidney stones!

[lioness]

Permanent bilateral stents? is that safe? can't they cause infection? I didnt know there was such a thing...uros normally want these out 2-3 wks after the procedure. Exactly! If you ask your uro if he has had stones he will probably say "no". I am curious to see what could be obstructing you ureter from the outside... Being that the urinary tract is very delicate...what could it be??Sometimes if you explain your situation, daughter's graduation, wedding, a uro just "might" move up the treatment or surgery...it just depends on where you go...I dont have too much luck in ER better in Urgent Care...
I take potassium citrate and thiazides for my stones and probably will for a while as well as prophylaxsis antiobiotics for my recurrent infection...diet does nothing to keep my stones from forming its all about fluid intake and medication...and many bathroom trips...

I wish you well...& congrats on your daughter's graduation and best wishes at your other daughter's wedding...I hope they find out the what is causing the obstruction in your distal ureter...seems mysterious to me and don't understand why a uro doesnt want to find out what is wrong...frustrating indeed I have been there, done that...it has taken me 3 yrs to find a uro to believe me...sort of...and actually talk to me...it makes so much difference...and being that there arent too many (if any) female uros out there doesnt help, either, being that uros are mostly male and dont want to hear a whiny female stone patient.

[Stoneman231]

Lioness,
What does that mean your stones were infectious?
I have been dealing with "this" kidney stone issue for almost 3 monthes now.
Started with a trip to my internist who told me you have no stone (no blood or infection in pee)
Followed by a well known Urologist where I live..He missed as well (no blood or infection etc)
Was going to right me off as a prostate infection..That procedure sucked!!!!!
But Thank God he gave me a CT scan, because of my 4 prior stones I had 4 in me.
1 in my groin like I said (noone listened) and 3 in my Kidneys.
After my ESWL everything went downhill.
3 days after my procedure I felt my heart doing flops and my BP hit crazy highs.
After stress tests and cardiologists they say anxiety brought on by the whole stone ordeal.
OK they're the Dr's . Still don't feel right..
My question is how did you feel when you had an infection(stones)
I'm still passing pieces and have 1 piece hung up in my groin area waiting to pass.
Maybe what I'm feeling is the stone fragments or a form of anxiety.
Never had this prior to this episode of stones.
Any body know what "sludge" is he said I have a little.
How do you pass that? Fluids..
Thanks

[lioness]

My stones were what you call "struvite" stones & "staghorn" stones the shape of a stag hence the name. They branch out to the collecting ducts of the kidney and can destroy a kidney...so I have to pee in a cup once a month...and be on low dose prophylaxsis antiobiotics until ...I have also had a PIIC line for at home IV antibiotics...my stones will never passs confirmed by my last trx uro. I will always need some kind of intervention.

My stones are related to infections. My new component is a little oaxalate and still the main component is hydroxylapatitive, magnesium, ammonoim phosphate stones, still infectious related. There is a certain type of urease splitting bacteria which is called Proteus (I had this for 9 mos before being diagnosed with kidney stones) NOT E Coli that makes up this special stone material. Being that I am female infections are a more clinical problem in my stone management...and females have a tendency to have a lower urinary volume, which is not good either in stone management, another one of my problems.

Since males have different plumbing the pain of passing a stone is different...

I hope

KUB x-rays do nothing for me and only show little stones, if you're lucky. I request CT's and ultra sounds to see if there is anything down there seems to be a bottomless pit even if you're clear in the collecting system doesnt mean it's clear in the kidney tissue...as you can see I am well read about my case.too well read but doctors didnt tell me much...we live in a day where they have to get so many patients in to meet that quota if you have a good PPO great, but depends on where you go for stone treatment.

I used to have a well known uro too until he left to go into private practice...

Being that I have an HMO that is like "doctor in a box" doesnt help eitiher. My new internist is just out of medical school and knew nothing about my hx when I saw her...yesterday. So now I am more frustrated than ever. Had a CT urogram done on 4/13 so am waiting for the results on that and have an appt with a local uro I found who actually partially agrees with my pain, hurray!!!

I

[Stoneman231]

Thanks for the info.
Good luck to you with your stones.
I have not gotten the results of my 1st stone passed 2 monthes ago..The lab maybe lost it or they are busy??
My current stone is close to passing , hopefully this week-end..
Thanks for the info...
All the best..
Robbie