Nov 27, 2000
I suffer a dilemma as a spouse and caregiver. My husband is suffering from vasular myelopathy, with bladder/bowel problems (self-cath./many laxatives but now suppositories needed), and ADC (just had lumbar puncture - 9 white cells, 61 protein) with extreme memory loss. Each day he tells me when I visit he's been all kinds of places with people we haven't seen in years, really nothing he tells is true or accurate. He is now hospitalized, facing longterm care as he would no longer be safe alone at home and I have to work. My question is this: Is ADC an illness that will eventually cause his death? I wonder if the "eating" of brain cells by the disease will actually shut off parts of his body and actually cause death. My other dilemma is this: it was his wish that when he could no longer live at home and have all his mental faculties, he be taken off the "cocktail" of drugs and let nature take it's course. The Dr. does not want to honour his wishes; saying he'll benefit from the drugs. In my mind if the 1200 AZT he's taking a day were helping, he wouldn't have the brain/spinal problems he is. (Also has great deal of trouble walking, getting up, etc., and uses walker.) I wonder if taking the drugs isn't just lengthening the process that is inevitable.
Appreciate any help or comments you can help me with. Thanks.
Response from Dr. Feinberg
If your husband is not resistant to the HIV drugs he's taking, it's certainly worth a shot at decent therapy before you decide on comfort care only. You don't say how long he's been on medication -- that might make a difference -- and it's been a long time since 1200 mg of AZT was standard of care for ADC. Is he getting other drugs, including one or more protease inhibitors and/or a nonnucleoside? What has happened to his viral load and T cells? If he's not responding in these respects, he needs a change of therapy. On an anecdotal basis, I have seen amazing results in the past (including a patient like your husband who had bowel and bladder incontinence and is now functional and living independently) using a nevirapine-based combination.
And, yes, it's possible that he will not respond, although in your place I wouldn't give up unless I was assured that he had received the best treatment possible. Untreated AIDS dementia complex often leads to a state of extreme debilitation such that patients often develop pneumonia or some other infection that their weakened immune system cannot handle. They do not usually die because part of the brain is "shut off" by the ADC. Good luck!
Thrush,million plus viral load, Tcell 4 ??
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