|This is all I have to look forward to?
Jun 9, 2006
Hi Doctors, I have just embarked on what is now a new life, a life with HIV. Im very angry with myself for getting in this predicament when it all could have been so easily avoidedit was a one time lapse in judgment. I must tell you I am scared out of my mind and very sad. I am new to all of this (i.e. largely ignorant about this virus). I know its an STD, extremely deadly and a retrovirus that has the ability to incorporate itself in our cells. Other than that, Im not very well-informed. I just visited a well-respected doc who sees some HIV patients in the area to get some preliminary blood results done. I have not visited any HIV sites before (this is the first one I have looked at). I was referred to this site by a close friend who told me that the docs on this site were experts and very caring and that I should see what you guys think. I need help, I need your thoughts. I have not gotten a chance to read through your forums, but I plan on doing so after I post this message. After visiting my HIV doc, I came away a complete wreckprobably the worst I have ever felt in my entire life. I want to relay to you the things he told me and see if you concur. If sowell, whats done is done. These are pretty much his exact wordsI made sure I took it all in despite how painful it was. Well, he told me Im sorry that you have acquired this disease. That said, it was entirely preventable and the choice you made will now impact your life forever and probably not in a favorable way. I know that youre scared and you have every right to be. HIV is a nasty, deadly virus thats smarter than we are. Our bodies simply cant handle it alone, which is why we have medications. Although the medications are pretty good, they will definitely wear out after a while and youll likely be left with few options. A huge part of being an HIV doc is to give hope to their patients, hope that they wont die of this disease. Unfortunately, most of this hope is false hope and HIV docs have to get in the business of bullshitting (yeah, he actually said it) so that their patients dont go and commit suicide or get angry and knowingly infect others. HIV physicians like to make all sorts of rosy predictions about living with this disease which is folly. The reality of the situation is you most likely will not be around to see your nieces grow up. (I started losing it at this point) You have to arm yourself with this idea, because a long, fruitful life is not something that should be expected. Its possible I suppose, but youd be an exception rather than the norm. HEART will probably prolong your life for a few years, but it certainly wont afford you a lifetime of viral control. If youre really really lucky, Id say 10-20 years is possible, but after that I just dont see much hope. Realistically, youll probably burn through all of your available medications in that time and then youll be waiting for salvage regimens (what are those?) that may or may not be effective. Besides, I dont think youd want to be living with HIV for too long because your quality of life by that point would most likely be less than desirable due to the side effects of the meds or HIV infection itself. I do not want to sound grim, I simply want to let you know that your prospects in the long run are not certain and probably arent very good despite the efforts of scientists. Of course I want to believe youll live a long life, but you shouldnt be expecting this. Rather, you should have avoided getting yourself in this mess to begin with. It was entirely preventable. Even with new drugs being developed here in the states, HIV seems to find a way to win. This doesnt mean you cant make the most out of your circumstances right now, but some things are beyond our control. Coping with this disease, I agree thats possible. But actually LIVING with it is quite another matter. Things are somewhat better now than they were 20 years ago, but dont count on any miracles. Most likely, sooner or later, you will die of AIDS. Thats the truth. You must be ready for this. Im very sorry. So that is what my doctor told me, no joke. Everything just hit me like a train. He wasnt being mean I dont thinkhe just said everything in a really matter-of-fact way, no ifs ands or buts. Well, now Im really down and really really sadnot depressed, just sad. My best friend told me to get another doc, that this doc was not a good guy and that HIV docs do not just spew BS to their patients. I like him, think hes a decent guybut maybe Im wrong, I really dont know. My parents dont know anything yet although I think they suspect something is wrong, and I cant tell them I have thisthe idea that they will be burying their own child is just too much. I was actually planning on going to medical school (ironic that someone with HIV wants to treat others I guess)planned on taking my MCATS in the fall and applying next year. I had done very well in all my pre-requisite courses and was very excited about starting a life in medicine, hopefully trying to do something for others. But now Im thinking Ill just forget about it. Also, I am gay, but I, from ever since I can remember, had wanted to adopt and have a family, even if it wasnt a typical family or a family that many would approve of. I suppose those dreams are gone too and I should just forget about that also. Im really sad that Ill probably be dead in 20 years and that AIDS is what will eventually claim my life. I am only 21 and have always looked forward to the next day, the next step, of seeing my nieces grow up, maybe having kids, but now I dont know anymore. I just dont see the point in striving for a good career or a family if I wont be around long enough to make them worthwhile. I have always considered myself very strong emotionally, but I actually started crying in front of my doc while he was talkingI wasnt bouncing off the walls, but it was obviousI couldnt stop the tears. I feel so ashamed. I know I need to be a man (even if I am gay) and take responsibility for my actions and do the best I can with the limited amount of time I have now. I guess Im wondering what you would suggest I do with my life now that it will never be the same. How can I break it to my family that I probably wont make it past 40? I love them so much and am heartbroken that I will cause them so much grief. I have been trying to rally everything I have to remain happy in spite of my prospects. Its kind of a dark moment in my life. If you agree with my doctor I would really like to know so that I can plan accordingly. Im sorry this post was so long and personal. Any of your thoughts or your advice would really be wonderful and much appreciated.
Response from Dr. Young
Thanks for your post.
Sounds like your doc is a nihlist- Yes, this is a terrible thing for you. The transition from a "healthy" person to someone with a medical condition, any medical condition (never mind something as serious as HIV) is very difficult; a source of much soul searching and apprehension. Yes, it's a terrible thing that informed people still acquire HIV; yes, HIV can be very serious and does kill people (particularly those who don't have access to medications). Yes, our crystal balls cannot accurately predict everything in the future.
But, HIV disease (and prognosis for those affected) here in the US has undergone the most radical turn of fortune in the modern history of medicine. A once (nearly) uniformly fatal disease is now one of chronic management with relatively simple, well tolerated medications. I expect first and second-line treatments to be very highly effective.
I have little angst that the newly diagnosed, adherent patient will do very well and lead full and productive lives (even to take the MCATs, or invest for retirement).
Read on here at TheBody.com, talk to others with HIV, learn about how others are living, loving and planning for the future.
I wish you well, BY
It works! Have faith.
Thank you Ben!
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