Thursday, February 02, 2006

Just when you think you can have hope

I've been plugging along now for a few weeks and feeling pretty optimistic. H's last viral load test was down, he's had more energy, he's eating, his night sweats stopped, and he's thinking more clearly. T-cells are 450+; VL 39K. He's looking more like his old self.

Now, his viral load is up, he's sleeping more, he's sweating again at night, and he's getting more forgetful and confused by the day. T-cells are still strong tho'; VL 73K.

VL almost doubling in a month is not good, especially since he's on one of the last meds that might work for him. We see his doctor next week. 100K VL is the threshold...if we can keep the VL below that, then the PML won't progress (as quickly).

What's striking now is how quickly he is getting more forgetful & confused. I had to explain our cell phone plan to him (granted, they can be confusing), but he couldn't track. 4 times. I've explained this to him before, but he forgot. So, I just simplified it for him. Here, use this phone....
We've had a friend, S2, stay with us the last week. He notices the confusion as well. He notices the decline since last year.

It's the PML. Stats are bleak: 90% of the folks who get it die within a year of diagnosis; a few have a complete remission, some stay where they are. Even with HIV meds that work to control the virus, which doesn't appear to be happening right now, average life expectancy is 2 years from PML diagnosis.

The short story is that it will likely get is just a question of how quickly. Last time we saw his Dr. (a few weeks ago), Dr. was very surprised that H is doing so well. We see Dr. again next Monday. It's horrible to see him improve physically, but to experience him losing his mind.

I've written about friends disappearing and offered some thoughts about what sick people need from their loved ones. Joe has captured that so well; I just fell apart when I read this post ("I Will Hold You Ten Times" is the name of the post. 1/30/06).

God, I am so tired and so afraid.

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