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Dementia with low CD4
Jan 30, 2009

My husband diagnosed w/ AIDS 9/27/08 (HIV diagnosed in 1993) after a stroke. He was off meds for 6 yrs. He was earlier diagnosed w/ Addison's Disease in July 2008 after becoming ill in April 2008. In Sept 2008, diagnosed w/ toxo of the thalamus, CMV, stroke, Addison's Disease, and now he has HIV dementia. His CD4 was 39 in Sept but dropped to 37 in Dec 2008. His viral load is undetectable as of Dec 2008. He is on Prezista, Norvir, Intelence, Isentress, and Truvada since 11/1/08. They didn't start HAART until they determined what the brain mass was. He is lucid most of the time but thinks it's 1990. He uses a walker most of the time to walk. He's unable to care for his basic needs. He is fed thru a peg 6 times a day because he will not eat. We've tried megase and oxandrone to no avail. He coughs up thick, white mucus, which he currently takes mucinex but it doesn't help. He sleeps 6-7 hrs per night w/ the aid of ambien + elavil. My question, is their hope of him recovering from all of this? Is the thick, white mucus the start of pneumonia?

I am his sole caregiver and very frustrated. We saw the Doc again today and he's thinking of changing his non-HIV med regimen.

Sorry for the long post.

I need help + answers. The doc doesn't care of the emotional side of the illness, he only cares about healing the patient.


Response from Dr. McGowan

I am sorry you feel so isolated, but you are doing exactly what he needs now.

There are several issues. The antiretroviral meds can make a dramatic difference in treating HIV Dementia. I have seen people bedbound and completely disoriented return to full function (and have their feeding tubes removed). It depends on the response to medication (your husband sounds as though he has made a great initial response to treatment) and how long he has been with dementia. Your husband's recovery will also depend on how much damage had been done by the previous stroke, toxoplasmosis and CMV infections. If there was scarring of the brain after these episodes he may have permanent deficits. If so, He would need to receive cognitive rehabilitation, which may be available at a brain injury center. Give him time on the meds (a few weeks) to assess his improvement. Regarding the phlegm. He should have a speech and swallowing evaluation. He may need to have thickened liquids or modified diet to avoid aspirating (having the food go "down the wrong way"). He should be fed in the upright position and they should check that he does not have alot of build-up of food in his stomach (residuals). Also make sure that he doesn't have oral thrush which can block his appetite and cause thick oral secretions.

He is very lucky to have you pulling for him.

Best, Joe

from australia

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