Just looking for some advice....

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So, I am a 33 year old woman who has never had any major problems in life (until now maybe?)

  I left work two weeks ago to go to the ER bc of awful pain in the my right side.  4 hours later I find out I have a huge cyst on my right ovary and a huge stone blocking my left kidney and my left kidney may not be functioning.  They said it’s “urgent” but not emergency surgery needed.  Hmmmm okay?  I call my obgyn and a uroligist the next day... two days later I’m in with the OB and they tell me my huge cyst is benign and we went over some options....  and I am more concerned about my kidneys at this point so finally get in with a dr over a week and a half later.  I drive down (2 hr drive) pay a first time visit 300 dollar payment for them to tell me I have a HUGE stone blocking my kidney and a bunch of stones inside my kidney.... he wants to see if my kidney is functioning at least 20 percent before he does any sort of surgery...so I go back this coming Monday for him to do a nephrostomy placement on my left kidney... for a month. I’m so stressed out for two major reasons... first and foremost... he said instead of taking my stones out he will take my kidney out if its less than the 20 percent functioning which I wasn’t expecting at all.  And second is that I have to wear a tube coming out of my back to my left kidney for a whole entire month.  I have an 8 year old and 2 year old both very active boys and I work full time and honestly just stressing about all of this.  Obviously I want to get to the bottom of it all so I can be healthy but I guess I’m still in shock or all this...  

The uroligist said this had to have been there for years...  which makes sense of a lot of things...  utis I’ve gotten over the years and unexplained nausea and so on....  I’m wondering if anyone happens to have ever been through anything like this... I’ve looked online everywhere.... 

Best case scenario is my kidney works good enough to keep it and they take all these dang stones out.  

Any response is appreciated smile

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8 Replies

  • Posted

    HI Anna,

    You have the most unique situation that I have either heard or experienced. I pray that your kidneys are functioning strong enough for kidney stone removal. I would ask for a second opinion before going through any medical procedures. Hopefully, you have great medical insurance that will both allow for a second opinion and also pay for the entire bill. Please get your family and/or close friends involved to help with the kids. You will need to focus your time on healing and figuring out what's causing all of this. The kidney stone removal is the easy part of your situation.

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    • Posted

      Hello Frank,

        Thank you for your reply.  Unfortunately I don’t have insurance of any sort which is another burden but I have some alternatives some friends have told me about that I am looking in to.... praying it is all going to work out but we shall see.  

      Thankfully I do have a wonderful family and support system and my husband especially has been my backbone in all this.  Usually I’m the backbone of the family.   Tomorrow is the day I get my procedure done...  I  am going to ask them why I must wear this for a month to know if my left kidney is functioning and Why not two weeks?  Anyways, thank you again for your response!  It so much appreciated. 

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    • Posted

      I hope all went well with your surgery.  I am waiting for my 2nd PCNL because they couldn't get to the kidney stone the first time 2 weeks ago.  I came home with a nephrostomy tube and a bag. Last week I went back and they took the bag off but the tube is still in.  They are going to try to go back in through the same tube with different instruments and if that doesn't work then they will place another tube and if that doesn't work they will go up me.  All of this kidney stuff is so aggravating.  Has anyone else had to have the procedure done 2 times because it didn't work the first time?

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    • Posted

      It is definitely aggravating and reading all the stories that people go through with kidney stones is so crazy.  I realized that I fall into a category of 2% of people who have kidney failure due to what’s going on with me....  basically I never had “severe” symptoms so my kidneys were never checked.  I had utis all my life but never once did a doctor say let’s look at your kidneys!  It was my bladder.  

      Also, I do know someone who has had several surgeries to get stones out before so I pray they they will have success on the next go around.  I wish you the best!

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  • Posted

    I can only tell you my own experience and hope that this helps in some way.

    I suffered with UTI's for months before a doctor finally thought it might be kidney stones and referred me to a urologist. That was in December 2016.

    I saw urologist in January 2017 and he said I had a large kidney stone. I  said I thought I might have passed it and he said "You've got about as much chance of passing that as I have of having a baby.!" 

    OK I thought at least we all know where we are with this.

    To cut the long story short I spent the whole of last year (2017) being referred to one urologist after another and they just kept referring me to someone else.

    Finally in June last year I saw a urologist in Cheltenham . Yes you've guessed right he referred me to someone in Bristol. By this time I really had had enough and pleaded with him to operate on me and not refer me to someone else. My plea fell on deaf ears and so the referal was made.

    In December last year the urologist at Bristol operated and removed all my stones.

    I was a complicated case because I was born with horseshoe kidneys (they are joined together) which made access to the stones a lot more difficult and the urologist at Bristol said the surgery was challenging.

    I have been for a follow up with him there is now no sign of any stones and he is not expecting me to have any more problems. Like you, I have no idea how long I had these kidney stones.

    Praying for you that they can save your kidney.

    Take care and keep in touch

    Sarah xx

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    • Posted

      Thank you Sarah....  that’s so crazy it took so long for you to get someone to work on you.  This doctor hasn’t turned me away yet....  I know that he is definitely wanting to make sure my kidney works before he wastes time taking all these stones out 🙁

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  • Posted

    update 7/8/18

    I went this past Monday and got the tube put in through my back into my kidney and I will just say.....I didn’t realize I would have to wear this bag down my leg!!  Lol.  So long dresses is what I’ll be wearing for the next month or so!  The next day after the procedure...I was so confused about why they put this tube in as they didn’t want me to put keep track of anything... not the color, the amount... nothing.  So I called my doctor feeling very confused and asked for a better explanation of all of this... and I will say I feel much better although still frustrated with it all.  

    So basically this is to hopefully “kick start” my kidney back into functioning.  Giving my kidney a break from all the fluid sitting on it for all these years.  My doctor is hoping that this month of it draining will allow my kidney to function over the 20 percent and then it would be worth saving my kidney and removing all the stones.  

    Now that I have a much better understanding of all of this.... I do feel better about it all.  

    I go back on July 30th for a lactic renal scan (to see the function of my kidney and probably both kidneys to make sure my other one is up to par to work alone) and also I’ll get a abdomen X-ray which I’m guessing is to see if the stones have done anything.  

    I will update as things happen!  

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