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>>>Hi all, >>>My 24 yr old nephew probably has PKD. I say >probably, >>>and this is the reason for the posting here, is that >>>he is under the care of the U.S. Veterans Hospital >>>health-care system. >>> >>>When he was 16, his family doctor found cysts on 1 of >>>his kidneys and was told to get checked every year. >>>Well, he didn't. A month ago he went in with a >>>hernia, had an ultra-sound, and masses were found on >>>both kidneys. They ordered a CAT scan and his >regular >>>doctor wasn't confident enough to make the diagnosis, >>>so he was sent to the kidney specialist. Today he >had >>>his appt, and the specialist said he most likely has >>>the disease, but threw in that it could be cancer as >>>well. And then they told him to come back in a year. >> >>>My question is this: >>>Are all doctors this nonchalant about this disease? >>>Is this the kind of disease that doctors don't worry >>>about until it's in the end stages? >>> >>>My niece is beside herself with worry. I told her to >>>call that doctor back and demand a diagnosis. They >>>had asked about genetic testing and were told the US >>>govt does'nt do that and would have to pay >>>out-of-pocket for it at Stanford. (that must cost a >>>billion dollars!) >>> >>>I just e mailed my niece and nephew this group's >>>website, along with about 5 others. I made my neice >>>promise me she would contact a group, to help with >>>questions and concerns. Until she or he does, >>>however, I hope it's OK if I try to find out info to >>>pass along. >>> >>>Has anyone here been treated this way by Veterans >>>Doctors? Is this normal? Any suggestions on how to >>>get a proper dianosis? >>> >>>Thank you very much, >>>Janet >> >>The DR may be waiting to put the diagnosis on his >>medical records. Everything changes once it's there, >>insurance often becomes a fond memory, even >>employability is affected. If you know he has PKD, >>learn about the disease and the steps he should take >>to avoid further damaging his kidneys and follow them, >>but at his age there is no reason to get the ball >>rolling yet, once it starts, you can't stop it. > >This is actually the reason I haven't gone in to get >checked although I am now seeing the symptoms come on >strong. My Grandfather died from PKD when my dad was >9, my dad's kidney's failed in '88 (about 10-12 years >of dialysis and 2 transplants later, he's holding in >there), my sister was diagnosed last year. Things >change after a diagnoses. For me the best course of >action right now is to kill off the "extra" proteins, >lose weight, cut out the caffeine, and drink more >water. Once symptoms get worse, then I'll have to >re-address going in to be diagnosed.
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