Yahoo article: Older AIDS survivors face new challenges,

http://news.yahoo.com/s/afp/20110530/hl_afp/healthaidsanniversaryelderly

Shared by a staff at CARES.

OK, I have been living with HIV for 20 years now and always figured it was going to kill me.  Sometime in the late 90′s, after protease inhibitors came on the scene, I started to realize I wasn’t dying quite yet so filed bankruptcy (yes, I was one of those “going to die so let’s go out with a bang”) and continued my disability.

Then I came to volunteer at CARES and transitioned into part-time and finally overcame the fear of giving up that measly $600/month in disability and went back to work full time.  That was 5 years ago and I am happy to report it is going well.

I also found out that following years of switching HIV meds and stopping due to side effects or a mutating virus due to missed doses (especially after a hard night’s drinking), I had developed resistance to all of the HIV medications except for the 2 very newest classes; HIV integrase strand transfer inhibitors and CCR5 co-receptor antagonists.  So I started this new regimen with the knowledge, come hell or high water, there could be no  mutating of the virus now as I had run out of choices. Guess what?  They work fabulously and I have the highest CD4 in 10 years (600-800) with a nearly undetectable viral load.  So life should be great, right?

So why is it my infectious disease doc tells me the greatest threat to my health is my weight?  Or more specifically, the EXTRA weight.  I distinctly remember that early on in this virus I was told it was good I had some extra pounds as it would serve me well if I got ill.  Back then they would see people lose so much weight following any illness they never quite bounced back to better health. Now you want me to lose it???  So I did what every red-blooded American does in the face of serious health issues and looked for the easy way out with bariatric surgery. I lost the weight but now know it was not the easy way out but it was the smartest and most realistic for me.  It also managed to cut my cholesterol and lower my blood pressure and in essence, cure my diabetes.  So I am good to go for another 20 years, right?

Yeah, except for the little matter of inflammation that effects us PLWH/A (people living with HIV/AIDS) and all of the health issues that go with long term HIV.  So it isn’t just about where is your CD4 or viral load but how about your CD4 percentage, which is a better indicator of how the virus is affecting your body (mine is on the low side).  Or let’s not even go down the whole “cognitive impairment” road.  Or as it’s more commonly known as dementia and 52% of PLWH/A are afflicted with it as compared to only 10% of the general population.  So while I make jokes about that is why I miss meetings or forget to file paperwork, it is really no joking matter.  I find I struggle with the angry emotions that also accompany dementia.  It is something that is best seen by your friends, co-workers and loved ones.  They notice the difference and chalk it up to aging. Or the severe neuropathy in my feet that causes me to have balance issues and may eventually rob me of my mobility. While I say a thank you that I can be aging, I recognize that the normal aging process is accelerated in PLWH/A.

This virus can be a long term manageable disease but please know it is not an easy thing to manage or live with.  So while I celebrate the fact that we CAN live for 20 years (or more) with HIV, I also realize it is a complicated, unfair world we live in and managing just one part of my health isn’t good enough.  Cancer still kills us, despite our undetectable virus and heart attacks take even the young. Learning to live long and well with HIV is a challenging prospect and requires resources beyond your HIV doctor. So hold fast the course and hope that one day this will all be gone as we find the cure but in the mean time know I’ll be waiting for the next crisis and hopefully handling it as well as I can.