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Long term effects of therapy for HIV
Aug 9, 2007

Recently my husband went to the ER for kidney stones (none were found) and after tests, he was admitted for pancreatitis. The following morning, our HIV specialist saw that my husband had been admitted and after reviewing the report discharged him. He said that the ER doctor misunderstood my husband's lab results and CT scans. He told us that most long term survivors (we were diagnosed in 1988 and at that time my husband was diagnosed with AIDS as his T cells were under 200) have enlarged liver/spleen/pancreas. He said that unless the doctor had knowledge of HIV he would normally assume pancreatitis was present. My husband had CT scans of the abdomen while trying to determine the cause for the attacks (similar to kidney stones and always requiring a trip to the ER). They've concluded that it is the bile duct causing the attacks which disable my husband who is normally able to tolerate huge amounts of discomfort. He survived IV ganciclovir treatments for CMV and is in the third week of Hep C treatment and tolerating the Pegasys/ribavirin extremely well. This was the first that we ever heard of having enlarged organs. Is this common for long term survivors on meds for HIV and how bad must the damage be for the ER doctor to diagnose Pancreatitis from the test results? We're not complaining mind you, we truly never thought both of us could have survived this long. But if the drugs we're taking are destroying our organs, what might we be facing in the future? I find this a really frightening piece of information to have been given. Thank you for providing this service and taking the time to answer our questions.

Response from Dr. Conway

I'm glad they seem to have figured out that the problem relates to the bile ducts as this is something that is often easily fixed. As for the organ enlargement, the liver and spleen may be enlarged because of the HCV. In acute HIV, they are sometimes enlarged as part of the initial response of the body to the virus. In later disease, the spleen may be enlarged as part of the ongoing immune response. The pancreas is generally not affected or enalrged as a result of HIV disease. Also, there is no condition of chronic progressive enlargement of the intra-abdominal organs as a result of long-term HIV infection, so you do not need to worry about this.

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