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Old 08-06-2006, 10:31 PM   #1
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DonnaLyne HB User
Kidney stone nightmare - sorry, long post

Hi all - new to this board and will try to keep history as brief as possible.
I started getting kidney stones in my 20's but when I felt one coming on, I'd usually drink a ton of water, take a pain killer and wait for it to pass. 4 years ago I got one that was too big to pass so went to a urologist who removed it was a basket (??) which worked just fine. Now for the current problem/time line

Dec 2005 - was unable to pass kidneystone so went to ER where catscan showed I had large stones in both kidneys. Since I had just moved to the area they referred me to a local urologist who explained that they could only work on one kidney at a time so scheduled lithotripsy (sp)and stent for the right kidney and a stent for the left kidney. when I showed up for the appt. the dr was over an hr late so missed the time slot with the machine (he lied and said the machine was broken, nurse told me different though) and said he would just do the stents and reschedule the lithrotripsy. When i woke up he said he was able to put the stent in the left side, but the right was packed too tight so instead I would have to go to the cath lab where they put a catheter in my right kidney and had to pee in a bag. He rescheduled the lithrotripsy for 2 weeks later but said even though it probably wouldn't work he'd rather do the less invasive first. He tried it, nothing happened so he scheduled a second try for in January. Second try - still nothing happend so he said he'd try the laser surgery in 4 weeks. Went for laser surgery, he said he got entire stone out of right kidney and to see him again in a couple of weeks to see about removing the catheter. 2 days later I woke up with horrible pain & 103.5 temp. - my husband called dr who, when told about the temp and pain said "Well it's not my fault, she was fine when I saw her 2 days ago, besides I'm going away for the weekend so just go to the ER if she has problems" I went to ER, who admitted me and started me on IV antibiotics. For 4 days I complained about horrible pain in back where the catheter tube came out but it wasn't until the infectious disease dr came by that he took that bandage off and noticed all the pus coming out my back. He had the tube removed and after 8 days in hospital I was sent home, but the constant IV's caused a blood clot in my arm so I had to take blood thinners for 3 months and was told no more work on my other kidney until the clot had disolved. I lost confidence in my Dr. so tried to find another urologist during the break, but no one else would take me on because I still had the old urologists stent in and they didn't want to get involved in the middle of a case because of liability. During this 3 month period ended up in the ER at least once a week as I kept getting repeated infections/horrible pain from the stent in the left kidney.
Once the blood clot finally disolved I went back to my old urologist to get the work done on the left kidney. he said it wouldn't be too bad since there were only 3 stones in there, and even though they were too large to pass they weren't impacted like the right one had been so he felt the lithtripsy would work fine. First try thru he said he broke up 2 of the stones that were in the kidney, but the 3rd stone was by the stent so he just left it there and said he would probably take it out when he removed the stent. The next day I was back again in the ER with horrible kidney pain. When they did the cat scan they found out that the 3rd stone wasn't near the stent but had fallen into the stent causing a major blockage, swelling of the kidney, and kidney shut down. They sent me to the cath lab and had a tube put in the left kidney (so now again I was peeing in a bag) to get it going again. they also put in a central line so I could take IV antibiotics at home for 10 days for the infection. 2 days after completing the IV antibiotics I ended up back in the ER with another infection. The dr there says get back to urologist ASAP and have him get the stent out, and the stones out and the tube out as all this extra equipment in me was what was causing the continuous infections. I go back to DR and say get stent out now (such horrific pain that painkillers didn't help, losts of peeing blood, etc...) he takes stent out and blasts at stones again with lithrotripsy. When I wake up he said he blasted that last stone, and took out stent and to see him again in a month. A month later he says he's not ready to do another lithrotripsy as the machine would be available for 4 more weeks, but would schedule it then. I asked about getting tube out of back (tired of peeing into bag) and I was planning on going on a vacation to New Orleans for husband's 50th birthday. He sends me to the cath lab who did a dye test which showed that the kidney had no drainage at all, therefore the tube couldn't come out, and I should have stent put back in immediately. They tried paging my Dr. but he was unreachable so they tell me to go ahead with my vacation plans and to come back to the cath lab a week later and they would get a hold of my dr before then so they could schedule the new stent etc... On our last day in New Orleans I got sick again and went to their ER. The Cat scan showed that the bag wasn't draining very well (maybe had a kink in it???) and was barely working, and still no drainage otherwise. They were shocked that Florida even allowed me to leave with the no drainage. Due to their horrible medical situation since the hurricane last year, they suggested I head back right away and if it got worse on the way to stop at any ER en route so I could have surgery. Once I got back to FLA I was heading out to my previously scheduled appt at the cath lab when they called and said that my urologist was out of the country for 2 weeks and he had left instructions for no one in the cath lab to touch me until he got back. I explained about the problems I was having with the cath not working well in New Orleans and that I couldn't wait 2 weeks to have it checked out. They said, too bad, the dr was very specific that no one was to go near me. I called a lawyer friend and explained about all the problems I was having and how I couldn't get another urologist to look at me, and I was afraid of dying while waiting for the dr to get back in town. He suggested I talk to a patients advocate at the hospital. I went to the ER, asked to see a patient's advocate and went thru all the woes I had been thru in the previous 7 months, how I resented the hospital for referring me to that Dr., and just unloaded completely on this poor woman. She called around and found a really great urologist to come in and see me that night, he went thru all my hospital records, noticed that I had the septic infection with the last kidney so he admitted me to start me on antibiotics, followed by surgery the next day, plus an extra day in for more IV antibiotics. After the surgery he said that he had taken the cath tube out of my back, and removed one very large stone plus over 3 inches of gravel from the uretha(???) and he put a stent in. He said there was still a little bit of gravel in the kidney that had been attached to the tube and for me to keep drinking water and see if it would pass. After trying for 5 weeks the gravel still remained so he said he'd take the stent out since it wasn't helping and we'd just keep an eye on the gravel. Within 24 hrs of taking the stent out I was back in the ER in severe pain. Cat scan shows that the kidney swelled right up and wasn't functioning well. The new DR's partner came by to see me and scheduled me for a new stent to be put in the next day. After putting the stent in, he explained that there was so much scar tissue from the previous Dr's work that it's causing all these problems now. he suggested the new stent in for a couple of weeks and then they will check and see if the kidney is able to function with out the stent. If that doesn't work, then he says they will see if they can cut out the scar tissue and fuse the parts together.
I'm not sure why I'm writing this post, I guess I just need a place to vent, with people who might understand. This nightmare has been going on for 8 months now, I've been out of work because of all the pain, infections etc... I do have insurance but my co-pays have already reached over 10K, and I'm just plain miserable with no end in site. Any suggestions are welcome as I think I've reached the end of my rope.

Donna

 
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Old 08-07-2006, 11:40 AM   #2
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sunshine123 HB Usersunshine123 HB Usersunshine123 HB Usersunshine123 HB User
Re: Kidney stone nightmare - sorry, long post

Hi Donna:

I am so sorry for what you've been going through. I'd want to kill that first Urologist you saw. What a pompous, uncaring ***. I've had kidney stones off and on since I was 20. I'm 56 now. I've only had a stent once and could barely stand it for a few weeks. I just can't even imagine the hell and pain you've suffered through. I'm at a loss for words as I haven't dealt with a situation like yours. I hope you can find an expert Urologist to help you. You'll be in my thoughts and prayers. Hugs, Sue

 
Old 08-07-2006, 12:56 PM   #3
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bettgirl HB User
Re: Kidney stone nightmare - sorry, long post

I just came upon this site....wow, there is a site for just about everything! I am dealing with my 3rd Kidney Stone drama. My first was about 10 years ago when I was 5-6 months pregnant with my first child. I didn't know what the hell was going on -- when I called the doctor they thought I was in labor I was having so much pain!! Luckily that stone passed by itself within about an hour!! My 2nd one was in 2003 when I ended up in the ER in the middle of the night. With lots of fluids that one passed by itself too!
3rd times a charm, right?? WRONG! On July 31st I left work @ 1 pm (early) having pains in my left abdominal/back -- went home and tried laying on a heating pad -- by 5 pm and after 7 hours of pain I went to the ER. They poked like 5 places trying to get an IV in (unsuccessfully). Then they gave me shots of Morphene (sp?) into my butt. Went for CT scan and as I suspected they found a stone. They said it was large, but just said to follow up with an urologist the next day. Gave me some Percosat for pain management. Had to go back to the hospital the next day to get my CT scan on disk to take to the urologist. The urologist walks in after reviewing it and says "you aren't passing that one!". Then he rattled off some procedures we needed to do and then was pretty much off and on to the next patient. It was like a whirlwind. Went back 3 days later to have them go up with a scope and place a stint, and then have Lithotripsy Found out before the procedure (via x-ray) that the stone was 11mm x 12mm. After all is done I wake up and am glad it's over. Wait FOREVER for the doctor to come talk to me. SUPRISE -- they couldn't do the Lithotripsy because when they got up there they found puss (infection). I was so disappointed. Now I have a stint in and antibiotics and have to come back AGAIN! I remember the doctor suspecting an infection and he gave me 3 days of antibiotics -- so why the hell didn't he check for the infection before putting me out and starting on the procedures??? Anyhow, last Wednesday went back in for the Lithotripsy. Woke up in pain afterwards!! They gave me Percosat but it didn't even take the edge off. It wasn't for another 3 hours -- and more Percosat that I got any relief!! Then the fun of peeing in a "sleeve" and straining. Looked like pure blood -- yuck! That night I did start passing some sand-like stuff...guess the lithotripsy worked. Put some in a specimen jar and hope they can analyze it and find out what kind it is. My husband is sure it's from drinking too much milk! ha ha Now I have an appointment this Wednesday to have a follow-up X-ray to see if all the pieces are gone. I may get to have the stint removed also. I want it out, but I am pretty nervous about having it taken out after reading stuff on the internet. Anyone have first hand knowledge of stint removal they can share????
It would be greatly appreciated.

 
Old 08-08-2006, 01:56 AM   #4
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milimoki HB User
Re: Kidney stone nightmare - sorry, long post

Ummm like WOW. Your first urologist is an idiot is all I can say. I have had many stints, and they are horrible, and very very painful to me. I have had a few times when the stint removal was a nightmare, and the other times just medium trouble. But it was all painful. I feel so bad for you two, I know how you feel. I have so many of them, I had to get a pain Dr, which has helped so much. Keep us informed!!!

 
Old 08-08-2006, 06:02 AM   #5
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Jessika03 HB User
Re: Kidney stone nightmare - sorry, long post

I feel so bad for the tow of you, Kidney stones are horrible I myself have an idiot for a urologist too. I have Tons of stones in my right kidney to many to count he says, Mine will not to surgery he says "most" of mine are passable
And I am fine with that, BUT he sends me home with no pain medicine says they should not hurt well I hurt BAD I passed 8 last week they were not huge but they were big enough to hurt I had to go to my family Doc yesterday to get pain medicine just so i could deal with the pain, me pee is straight blood. I swear I feel like going to his office and rainsing Hell, I should not have to do this without any pain relif I bet ya 20 bucks he has never had the first kidney stone because I dont think he know how painful these truly are.

 
Old 08-08-2006, 07:09 AM   #6
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sunshine123 HB Usersunshine123 HB Usersunshine123 HB Usersunshine123 HB User
Re: Kidney stone nightmare - sorry, long post

My Urologist is the same way with pain meds. I have to beg for them. When I first found out about my current stone and asked him for pain meds. in case I pass it, I got a RX for 10 pain pills. I think the Drs. out here are especially stingy and weird when it comes to pain meds. I don't have the "warm fuzzies" for any Dr. I've ever had and I've had plenty of idiots too. Years ago I saw a Nephrologist about my stones. He was looking at my xray backwards so thought the stone was on the right side when it was really on the left side.

 
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