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Babies on the Brain
Mrs_Liberto
member
I feel like a walking kidney disease encyclopedia.
Mrs_Liberto
member
I know, I know, I'm not supposed to Google. But I spent a few hours looking up treatment/prognosis info re: my kidney disease and I think I'm feeling a *little* less unsettled about my appointment tomorrow w/ the renal surgeon-- at the very least I have a more comprehensive/well thought out list of questions besides "dude. WTF!!" to ask her.
I also discovered that there's a grand total of ONE published article specifically relating to VUR and duplex kidney being discovered in an adult--either of those diseases are normally discovered/treated in utero or at the very oldest, by age 5. I now know why the renal surgeon is consulting with the pediatric renal surgeons at Children's Hospital. 
Maybe I'm such a medical marvel that they'll use me for journal studies and pay for my surgery? HA.
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Re: I feel like a walking kidney disease encyclopedia.
They should! Maybe you could get it so they have to pay you whenever they publish about it?! :P
I'm glad you have more info. I hope they can figure it out quickly. Always nice to feel like you at least know a little more of what to expect.
So, how come they didn't catch this when you were younger?
Maybe they'll name it Liberto's Disease. Or syndrome. I'm not sure if I'd rather be a disease or a syndrome.
I'll be thinking of you tomorrow! My little cousin has majorly effed up kidneys - she was given the melamine-laced formula in china and it totally screwed her. Not that this has anything to do with you.
I had IVP's and at least 1 VCUG when I was little for an unexplained kidney issue - did. not. like. Boston Children's is awesome, so I am confidant they will be able to help! Thinking of you!
THAT is the million dollar question. I've had probably a dozen kidney infections since age 13-14 and countless UTIs but no one ever thought to test me for reflux. Although I guess in terms of probability, testing a teenager for reflux when she's never had an issue before would probably have been overkill. According to the urologist both ureters on the right side stopped growing around age 8-10. I've always been small for my age, so probably it didn't cause too much of an effect for a few years until I got a lot bigger.
The uro said that the lack of valve on my bladder probably actually saved me from some kidney damage-- if the valve had been functioning normally, the teeny ureters would not have been able to process the amount of liquid of a normal adult, and the backflow would have been twice as bad. But since there was no valve there, they just continually drained (like an open dam) and not a ton of back flow occurred on a regular basis. It still happens quite a bit, but nowhere near what it could have been.
I would just like to know why probably a half dozen medical professionals never once questioned why this was happening with such frequency besides "eh, sometimes kidney infections just happen!" (Totally not true, btw--even one or two of them can be life threatening).
I am just praying there's someone who can fix all this with robotic assist so I don't have to have open surgical repair, so fingers crossed for tomorrow!