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Author Topic: NRH Liver Disease--Warning  (Read 2474 times)

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Offline sally

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  • Posts: 17
NRH Liver Disease--Warning
« on: April 20, 2007, 10:22:04 PM »
I've just been diagnosed with Nodular Regenerative Hyperplasia (NRH) of the liver, which doesn't show up on standard liver function tests, but just caused me to be hospitalized twice and get 10 transfusions due to bleeding esopahageal varices caused by portal hypertension. I may also have pulmonary hypertension, which is often seen with NRH and if you know anything about it is a scary disease in and of itself. My ID docs seemed clueless about this disease, but I found that a French study published in the 11 ed. of AIDS early this year has shown that there is a significant presence of NRH in HIV+ people. Three of the people in their study are wait-listed for liver transplants. About 1.5 years ago, I was diagnosed with HIV nephropathy and told I'd be on dialysis in 2 years. I think more attention needs to be paid to both of these diseases as they're probably becoming more common as people live longer (I'm 25 years+). As I said earlier, doctors, including HIV docs, seem to be particularly clueless about NRH. Apparently, it's often been "diagnosed" in the past as "cryptogenic liver disease." That's synonomous with idiopathic. I read a lot and I was left flat-footed by these diagnoses. The HIV nephropathy may have been made worse or even created by a doctor who prescribed tenofovir at double the normal dose without paying attention to the fact that my creatnine had risen slightly. Anyone on tenofovir needs to be watched carefully for kidney abnormalities. Just wanted everyone out there to know about these stealth diseases. xxoo Sally

Offline DingoBoi

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Re: NRH Liver Disease--Warning
« Reply #1 on: April 20, 2007, 10:32:21 PM »
translation anyone?

Big words make my brain hurt.

Hi sally, thanks for posting even if I don't know what most of it means.


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