Solidben3
08-23-2003, 04:03 AM
Here's a long story, which I hope all will help me on.
Im 15. When I was born, i had a very bad condition with my kidneys, in which the ureta tubes or somthing were completely tangled, and i couldent urinate out of my penis. that was fixed, after alot of surgery, but for some reason my parents, and the doctor told me my kidneys were still very weak, and a little underdeveloped and will get stronger over time. I dont know what this was called, but i know its 1 in a million. Basically, i cannot eat alot of protien (or so im told) and i have to maintain a good weight, or else ill end up on dialasis. I CANT TAKE IT. Im restrcited to maybe 40-50 grams of protien per day, which isn't so bad, but at this age i feel like i can definatly eat over that amount and remain healthy. Does anybody know what this disorder is called, or know anything about it? it would mean SO much to me because this has been a problem in my life for my whole life and will continue to be. Please respond!
I tried posting this in the kidney disorder forum, but there's almost no traffic there, so hopefully I can get some more responses here!
Im 15. When I was born, i had a very bad condition with my kidneys, in which the ureta tubes or somthing were completely tangled, and i couldent urinate out of my penis. that was fixed, after alot of surgery, but for some reason my parents, and the doctor told me my kidneys were still very weak, and a little underdeveloped and will get stronger over time. I dont know what this was called, but i know its 1 in a million. Basically, i cannot eat alot of protien (or so im told) and i have to maintain a good weight, or else ill end up on dialasis. I CANT TAKE IT. Im restrcited to maybe 40-50 grams of protien per day, which isn't so bad, but at this age i feel like i can definatly eat over that amount and remain healthy. Does anybody know what this disorder is called, or know anything about it? it would mean SO much to me because this has been a problem in my life for my whole life and will continue to be. Please respond!
I tried posting this in the kidney disorder forum, but there's almost no traffic there, so hopefully I can get some more responses here!
Sponsor
hry33
08-23-2003, 04:02 PM
I suggest you ask doc to refer you to a good kidney specialist who is up to date.
zuzu8
08-23-2003, 04:19 PM
Have your parents given you a NAME for your kidney disorder? There are so many different kidney problems it is hard to help you more without knowing what you are dealing with. Ask them, and post it here so we might be able to help you more.
zuzu xxxx
zuzu xxxx
mlgable
08-23-2003, 07:32 PM
Ask you parents what it is called or call the clinic and talk to your docs nurse. If you haven't been seen by a kidney specialist in a while then by all means see a specialist as things can change a lot in 15 years regarding your condition as well as treatment recommendations.
Solidben3
08-24-2003, 10:47 AM
No my doctor is a kidney specialist, however she never gives me the details, for example the protien intake, once she said 50 grams and I asked if thats like a brick wall..if i cant go past that, but she said actuall you can have around 60 but just to be safe, and a while ago she told me as my kidneys 'grow' I can basically have another 5 grams/year..but like..when does that end, but there's so many factors, i'd sortof like to be the expect on the topic..being its my own health condition, and its one in a million.
zuzu8
08-25-2003, 03:02 PM
Hi again-
If you can possibly get the name of your condition from your specialist...then maybe we can do some research and help you with more details so that you can develop more expertise on you particular disorder.
But again....we need a specific name...not something vague, like a "kidney problem" if you get what I mean. There a hundreds of different kidney disorders, each with its own treatment options, management issues and prognosis (meaning eventual "outcome") for the future.
zuzu xxx
If you can possibly get the name of your condition from your specialist...then maybe we can do some research and help you with more details so that you can develop more expertise on you particular disorder.
But again....we need a specific name...not something vague, like a "kidney problem" if you get what I mean. There a hundreds of different kidney disorders, each with its own treatment options, management issues and prognosis (meaning eventual "outcome") for the future.
zuzu xxx