Write a Comment
6 Comments
Hey guys...what the hell is up with all this "nice" stuff about and to me? Everyone knows I am more or less the Shirley McLaine "Hooker with a Heart Gold" kind of guy, and don't do well with tits and tears. Now if you want to walk my dogs, do the laundry, or cook a little supper....come on over! Anyway, all of the Harvard brain trust has agreed with me about having an Abacavir reaction and they told me to stop taking it! Can you imagine...stop taking a drug that is nearly killing me and WILL most likely kill me faster than Dan Quail trying to count 10 correctly if I ever take it again. So I am taking a "wait and see" approach and I will keep everyone up to date. Just a positive FYI to the health care you are getting TIM - it was a wise and prudent thing your doc (or NP) to do the screening you for a possible Abacavir hypersensitivity reaction before you needed to consider it as an option. Having this information makes switching meds less stressful. It should be the standard of care today. Just to put this all in perspective when I started AIDS therapy some 15ish years ago there about 6 drugs available. Abacavir certainly WAS NOT one of them. It is amazing that there are nearly 30 agents available today. As a matter of fact, I kind of get a little sad when a new AIDS drug is approved and the world no longer stops in its tracks over the addition of another agent against this fucking killer of a virus. (I get the same reaction over space launches. When I was a kid in the late 50s...the entire country would stop still to watch a launch and the SPLASHSDOWN...you know that is where the astronaut was simply free falling through the atmosphere until he hit water, then sat in the space capsule for hours until a ship could get him. Now we send dozen of men and women into space to live and most people are clueless that it is even happening. We think of miracles as normal occurrences...but they aren’t...they are MIRACLES!!!!
Sorry about your hard experiences in regards to abacavir. I too had a sensitivity test for it. I haven't started the drug yet but for future FYI for my doctor I suppose. I am on Truvada-Ritonavir-Reyataz combo. So far so good but my creatinine is elevating to 1.4 and my total bili is creeping up as well. So no definite signs of renal failure of hyperbilirubinemia. May be my doctor wants to switch me to it in the future. I too am a health care provider and am concerned with the side effects of these meds. My heart goes out to you babe! Keep your chin up! -------TIM
Well, I suppose I should keep the second opinion as a secret, but what the hell. The tall lanky Harvard doc flounced in and hugged me. Told me I was hotter in person than any pictures on the web. Gave me another hug and said, "Holy fuck, do you know how lucky you are to be alive?!" "Actually I do. I kind of played a big role in getting the drug that is presently trying to fry my ass launched." "Damn you’re kidding?" Sweet little pause from Dr. Harvard again. "You know you are really hot." I place my hand to my forehead and say: "I do feel warm. You think maybe you can take my temperature?" Then I do what I always wanted to in a situation like this. I farted non-stop for 7 seconds. (Yes, I did indeed time it.) I smiled and he backed out of the room to go get me a nurse despite the fact I yelled "I was a nurse and what the hell was I going to with another one?" After a few minutes passed and it became clear that unless the Second Coming was about to occur no one was ever going to walk through my exam room door again. So I picked myself up, farted again, and went home.
I just love your posts. They are so raw! The docs (their staff), pharma, friends, family, the public and government officials just cannot even imagine the brutal mental terror inflicted upon long term survivors who just want to get well. The bargains we strike with God; The promises we make to ourselves. Most days I feel like a cartoon mule that big pharma rides with the carrot attached to the stick - the carrot just out of reach - me marching ever forward. Do we have a destination? Does it matter? Yes, all these hurdles are the only way my stupid self will ever awake from the dream and recognize the good. Sorry you're having a rough day - with enough feathers some day you will fly. Keep up the good work. -Bill ps. For what it's worth, I've been on abacavir for 7 years, so your work was not been in vain.
uummm...have you ever thought of a secret opinion?
Ric Ferri
Okay Folks...everyone agrees with me that I am indeed having all of the 5 warning signs (yes, a rash was found on my butt - seems like a little God humor there) of Abacavir hypersensitivity reaction. Imagine a patient being in turned to his own body and who knows what he is talking about...maybe clinicians will have to try to start listening again to us damn patients!? Well the update here is I am going on yet another new therapy tonight....YEA!!! I haven't been this excited since I saw them lower Nixon into the ground. Will keep you posted!
February 6, 2009