Well that was some major suckage. — The Bump
Babies on the Brain

Well that was some major suckage.

My kidneys are fvcked. Like bigtime fvcked.

MD found kidney reflux on the first set of scans she took almost instantaneously-- the scan is run with dye up through the bladder, and if any leaks up into the ureters or kidneys, then reflux is diagnosed. 

Guess who has rockstar ureters that go super fast with 100% shittastic sense of direction?! Every scan shows my ureters plain as day, which you shouldn't see at all if things are working properly. They just happen to send fluid the wrong direction entirely.

So Dr. Google tells me that kidney reflux in adults is super rare, and that I'm probably in stage four or five (stages 1-3 are only dx'ed in kids and go away on their own by puberty). I have a followup test on the 11th which will tell me whether or not I'm stage 4 or stage 5. Either way, I'm 99.9% sure I'll be having surgery in the next few weeks. (The only treatment options for kidney reflux are antibiotics or surgery and since I've been on antibiotics with no luck for a decade, I'm guessing surgery it is.)

If it's stage 4, looks like laparascopic, and if it's stage 5, it will be "cut open" surgery.

Either way, my uro says TTC is officially off the table until a) kidney function tests come back clean (doubtful after a dozen kidney infections and b)surgery is successful.

And here I was being all excited about having options re: TTC w/ RE or adoption. Grr. 

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Re: Well that was some major suckage.

  • Ok seriously Em was JUST diagnosed with this.  Like a week ago.  I just posted about it below.  I'm so sorry. :(  I hope that they are able to fix it soon!!! 
  • Yea that does suck.

    Here's hoping it's a 4 and not a 5.  I'd take lap over cut open every day of the week. 

    Fuuck TTC - I'm moving on.
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  • Oh no, I'm so sorry Lib! 

    At least you don't have to do that elimination diet?  Lame silver lining I know.  I don't know what else to say.  :(

  • Aww Lib that's awful.  Why didn't they check for reflux sooner?  Hoping things get solved and fixed so u are back on track with ttc.
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  • image leslie13510:

    Oh no, I'm so sorry Lib! 

    At least you don't have to do that elimination diet?  Lame silver lining I know.  I don't know what else to say.  :(

    I am somehow slightly thankful that we haven't been able to conceive. Undiagnosed kidney reflux could easily have killed me or any babies I was lucky enough to try to have. The risks of carrying a baby w/ it are about four times the normal risk for miscarriage, pre-e, and preterm labor. 

    And now I'm terrified that we somehow managed to conceive this cycle against all odds and now I'll have a super high risk pregnancy. I haven't even confirmed O yet and my urologist said it was fine, but I'm definitely having a freakout. 

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  • Oh, Lib, that sucks. I'm so sorry. I hope it's stage 4 so the surgery is easier and fixes everything quickly.
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  • I'm sorry! I wish you the best diagnosis and the easiest options available!
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  • image twinkletoes815:
    Aww Lib that's awful.  Why didn't they check for reflux sooner?  Hoping things get solved and fixed so u are back on track with ttc.

    I honestly have no idea. I've literally had a dozen + kidney infections since I was about 15-16. I've seen half a dozen medical specialists and caregivers over several states/hospitals and not a single one thought to run these tests.  I know it's extremely rare in adults but at some point, an otherwise-healthy young woman coming in to see you for yet ANOTHER kidney infection should warrant some closer investigation. It's a congenital deformity so it's not like it just cropped up overnight!

    I honestly think I'm more upset about that than I am about the prospect of surgery. Ugh. 

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  • I'm shocked that they didn't test for it sooner too!  Heck Em had one UTI and she got tested for it. 
  • SUCKAGE!!!!!

    I'm so sorry. I'm hoping for stage 4 for you!!!!

    ((Hugs)) 

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  • image ***SweetPea***:
    I'm shocked that they didn't test for it sooner too!  Heck Em had one UTI and she got tested for it. 

    SERIOUSLY?!?!?!?!

    I get uti's pretty much daily if I don't take my antibiotics. It's been like this for a freaking decade.

    I hate people. And I'm really glad you caught it with Em now. 

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  • Sorry Lib! I hate that for you. xoxo
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  • image Mrs_Liberto:

    image ***SweetPea***:
    I'm shocked that they didn't test for it sooner too!  Heck Em had one UTI and she got tested for it. 

    SERIOUSLY?!?!?!?!

    I get uti's pretty much daily if I don't take my antibiotics. It's been like this for a freaking decade.

    I hate people. And I'm really glad you caught it with Em now. 

    Yeah she will be on daily antibiotics for a year and then they will do the VCGU again to see if it's gone or worse or whatever.

    I seriously want to kick some doctors in the shins.  I can't believe you went un-treated for so long!  Kidneys are serious business!

  • oh Lib, i'm sorry sweets. That sucks.
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  • image Mrs_Liberto:

    image twinkletoes815:
    Aww Lib that's awful.  Why didn't they check for reflux sooner?  Hoping things get solved and fixed so u are back on track with ttc.

    I honestly have no idea. I've literally had a dozen + kidney infections since I was about 15-16. I've seen half a dozen medical specialists and caregivers over several states/hospitals and not a single one thought to run these tests.  I know it's extremely rare in adults but at some point, an otherwise-healthy young woman coming in to see you for yet ANOTHER kidney infection should warrant some closer investigation. It's a congenital deformity so it's not like it just cropped up overnight!

    I honestly think I'm more upset about that than I am about the prospect of surgery. Ugh. 

    Exactly.  You would think that would clue someone in that something isn't right.  Just so frustrating for you that this could've been checked sooner.  :(

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  • Oh, sweetie. I hope things get easier for you!
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  • image ***SweetPea***:
    image Mrs_Liberto:

    image ***SweetPea***:
    I'm shocked that they didn't test for it sooner too!  Heck Em had one UTI and she got tested for it. 

    SERIOUSLY?!?!?!?!

    I get uti's pretty much daily if I don't take my antibiotics. It's been like this for a freaking decade.

    I hate people. And I'm really glad you caught it with Em now. 

    Yeah she will be on daily antibiotics for a year and then they will do the VCGU again to see if it's gone or worse or whatever.

    I seriously want to kick some doctors in the shins.  I can't believe you went un-treated for so long!  Kidneys are serious business!

    Meee too. Out of curiosity, how do you do a VCUG for a toddler? do you just cath her for the entire time? How do you record the output part? I had to pee in a cup and I can't imagine that works too well with a 2 year old!

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  • That really sucks Lib.  At least they know what is wrong now, so now you can move forward and get the problem fixed. 

  • image Mrs_Liberto:
    image ***SweetPea***:
    image Mrs_Liberto:

    image ***SweetPea***:
    I'm shocked that they didn't test for it sooner too!  Heck Em had one UTI and she got tested for it. 

    SERIOUSLY?!?!?!?!

    I get uti's pretty much daily if I don't take my antibiotics. It's been like this for a freaking decade.

    I hate people. And I'm really glad you caught it with Em now. 

    Yeah she will be on daily antibiotics for a year and then they will do the VCGU again to see if it's gone or worse or whatever.

    I seriously want to kick some doctors in the shins.  I can't believe you went un-treated for so long!  Kidneys are serious business!

    Meee too. Out of curiosity, how do you do a VCUG for a toddler? do you just cath her for the entire time? How do you record the output part? I had to pee in a cup and I can't imagine that works too well with a 2 year old!

    She got nitrous oxide and then they did the cath to drain and then fill her bladder.  For output they just had to ask her to go.  Poor thing was scared and didn't want to but since her bladder was so full she eventually did.  She had a pull up on. 

    She did a lot better than I thought she would do.  Although I know she won't be thrilled to do it again.  We meet with a urologist in a few weeks to see what the actual plan of action is.  Right now she's just on Bactim (I think that's what's it's called) daily.  Well right now she's on agmentum for another 8 days to get rid of her current UTI and then on the Bactim daily.  Yay!

  • ;( That really sucks.

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  • On one hand i'm glad they've diagnosed this. On the other i'm sorry you may have to have surgery. I hope they're able to fix it with the lap way and you can quickly get back to a clean bill of health to TTC.
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  • Ugh. I'm sorry babe. I've been through my share of kidney problems, but yours do not sound like fun! Hopefully the lap works well. 
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  • I'm so sorry to hear this Lib, but I'm really glad they finally caught it. I hope it ends up being stage 4 and that everything goes smoothly from here out. 

    image Mrs_Liberto:
    Meee too. Out of curiosity, how do you do a VCUG for a toddler? do you just cath her for the entire time? How do you record the output part? I had to pee in a cup and I can't imagine that works too well with a 2 year old!

    Not a toddler, but Jamie had to have a VCUG at 4 weeks old because they thought he had urinary reflux (he does not, thankfully!) but for him they just put a catheter in the whole time. He actually peed so forcefully he pushed it out though, which was pretty hilarious.

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  • Ugh.  I am so sorry that you are dealing with this.  I'll keep my fingers crossed that it is the lesser than the two evils.  Good luck with everything. 
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  • I'm sorry, Lib. That sounds awful. I hope it can all get taken care of soon.
  • That is some major suckage.  I hope its a 4. 

    It must be so frustrating.

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  • Oh my gosh. I'm sorry you have to deal with all that. It really sucks that they didn't catch it - that blows me away.  
  • Sorry to hear that lib.  I hope they are able to get things going/flowing in the right direction for you.  :(
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  • Sorry to hear that Lib! I hope that you get answers soon and they are able to help you out sooner than later!
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  • Oh Lib! I'm so sorry. I really hope it's stage 4 and they can get it taken care of.
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  • I'm sorry, hon. That royally sucks.
  • I'm so sorry Lib. I hope it's 4 and easier to fix.
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  • I am so sorry Lib. I hope that surgery is easy and very successful if that's the route you have to go.

    Big hugs.

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  • image princess101:
    On one hand i'm glad they've diagnosed this. On the other i'm sorry you may have to have surgery. I hope they're able to fix it with the lap way and you can quickly get back to a clean bill of health to TTC.

    This is exactly what I was thinking. I'm sorry that you'll need surgery, but here's hoping it will be the easier procedure and that it will get you well!



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