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Date Posted:13:29:36 10/16/07 Tue
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?
