|Re: How long will I live, or time for career change?
Aug 20, 2008
In response to Nelson Vergel's answer to the question "How long do I have to live; or time for a career change?"; Nelson must be one of the Stuart Smalley's of the HIV/AIDS pseudo-medical community.
"The fact is that newly diagnosed people like you will probably have a full life like everyone else without HIV. Do not change any plans or use HIV as an excuse not to go after your dreams. That was probably true 20 years ago, but not so much today. ... HIV is a wake up call that many people use to get healthier, but some others use it to get into self pity and self destructive behavior."
The unmitigated gall of a health professional to suggest to someone that "...newly diagnosed people like you will probably have a full life like everyone else without HIV.", is unconscionable and irresponsible. There is NEVER a parallel with having HIV infection and not having HIV infection. Those who do not have HIV (assuming they stay sexually safe and do not contract it in any other way)will never know the side effects of HIV medications, which once started will probably have to be taken every day for the rest of your life. They have side effects...period. If no other infection sets in for years to come, the impact on one's life just by taking HAART is immeasurable to the one taking it. Even your own forums regularly address the plethora of complex known and idiopathic syndromes that are associated with HAART and just having HIV itself. Stop telling people some fairy tale about life w/out side effects or that HIV itself may cause no harm in the body, if at "undetectable" levels in the blood. I realize that part of your job is to prevent panic and help lower stress-related intensifications of illness(es), but don't lie to someone newly infected about life with HIV disease. Yes, HIV Disease, even without OI's at present. If you have HIV then you are infected with an incurable virus; a retro-virus, no less. It is never curable as is the case with every virus ever to beset humanity. It is shameful to misrepresent the effects HIV will have on someone's life, especially telling them that they'll most likely live a long, healthy life just like everyone else. This is just NOT true.
'Oh, I have osteoarthritis with osteoporosis, so I can live a normal healthy life like everyone else without these...if I just take my boniva, a calcium supplement, and ibuprofen everyday...forever.' You see how silly that sounds? Except with HIV it's much worse. Even the newest meds (and supposedly with the least incidence of side effects) still have numerous side effects. If something works to heal or sustain life it is said to have an "effect"...anything with a legitimate effect will have a side effect. This is systematic logic and has been empirically observed for hundreds of years. If there is no side effect, there is no effect at all, e.g., placebo.
The newly diagnosed need to be told the truth...not as an "I told you so..." but rather as an honestly harsh reality they now face. Yes, take care of yourself, eat well and properly, stop smoking and drinking, slow or stop the late night party life,and once your T-cell (CD 4) count suddenly begins to drop (hmm, so it will drop, eh? just like everyone else without HIV? yes, I know about autoimmune disorders lowering T-cell counts, too), be sure to take your meds -- EVERYDAY on schedule. Oh, and don't forget to stock up on the Immodium AD, the Tums or Maalox, the GasX, the extra toilet paper, the saline nasal spray for the irascible recurrences of sinus problems common to all HIV patients, and the Tylenol or Advil for the headaches that start one day and never go away again. TELL THEM THE TRUTH. Tell them about the meds to fight the side effects of the meds and the other meds or diet regimens to fight the OTC meds that fight the side effects of the HIV meds, oy!...it's not an easy life. Ignore those advertisements from pharmaceutical companies declaring "Once a Day" treatments with some guy/girl out playing beach volleyball looking like a GQ/Glamour model (which they are). A full once-a-day treatment plan is still 3 (three) medications in one tablet or capsule. You're not going to be taking less medication, you'll be taking the same amount of RNA/DNA and reverse transcriptase altering chemicals into your body as you would with multiple pills. So they've been able to minimize the pill count, but what one pill does today is equivalent to the 12 pills/twice per day I used to have to take back in 1999. In fact, they're stronger; thus able to be lessened in volume.
Wow, I just preached on a huge soapbox...however, what MUST be said must be said. STOP, please stop this silly and irresponsible tactic of assuaging the fears of the newly diagnosed just because we have "new" meds today and there are Long Term Non-Progressers and Long Term Survivors. The former are an anomaly; the latter, well just ask them how they "feel" after years and years of meds, how they look, how is their cholesterol, adipose distribution, ulcers, heart conditions, increased risk of stroke, headaches and incurable systemic aches and pains, bone density loss, joint pain and nausea, loss of sleep, fatigue, eventually leading to malaise. I am one of them, but I live with it as best as I can. And I will not give up so easily; HOWEVER, I will tell anyone the truth about HIV/AIDS, not some G.W.Bush-type sound bite about it being no more than a chronic, but treatable disease not dissimilar to diabetes. Ugh!
To the newly diagnosed person who sent in the question to Nelson; Yes, you will probably live a long time and don't run off to a monastery or into "sofa seclusion". Take your meds when the time comes, but know this: Your life will never be the same again and it definitely WON'T be the same as just about everyone else without HIV. Harbor no delusions about that.
Live strong. Live well. Fight. Get informed and not just accept everything said by your doctor. They are clinicians now in this field, not "care givers" as was once the case. You must be your own care giver, with their assistance of course. Find a good, kind and gentle pharmacist who know about HIV/AIDS - not just the meds but the side effects of just having HIV. Offer the days of your life now to others; not to delude them, but to educate them. Yes, it can be an opportunity to re-evaluate your life and perhaps start anew, IF you so choose. But know this well: you will experience the infections with HIV sooner rather than later and it's not pleasant regardless of the cushy-mushy platitudes of the cadre of therapists and physicians who either don't have HIV or are LTNProgressers. Take your own life into consideration with dealing with this disease (and yes, HIV infection is a disease even without OI's as I said). You didn't mention your weight, your eating habits, whether you smoke or not, whether you have or are a regular smoker of marijuana, drinker, history of illness in your family, do you stress a lot, just your general health NOW. Nelson couldn't possibly fully answer your concerns without this information, but then again I suspect he'd still answer in a similar way -- the typically pervasive "feel good; don't worry" tenet school of health professionals. It's all the rage now you know. ;-)
Namaste and Much Peace and Good Health, ~ Mick
| Response from Mr. Vergel
Thanks Mick for giving us your insight
I am a 25 year long term survivor on salvage therapy with over 60 friends dead, so I think I know what I am talking about.
Most of the things you are taking about belong to yours and my life, but you cannot extrapolate them to someone who gets diagnosed in 2008
The fact is: people are living longer and the newly diagnosed are having more normal lives. Life expectancy has increased to almost normal in most. Most people that I know that started HAART after 2003 are doing considerably better than those of us who started years ago and were exposed to toxicities that may not be reversible.
I am not here just to make someone feel "good". I have seen enough data and moderate a group of 3000 patients on the Internet to know that naive patients starting first line HAART therapy are doing much better than yours and my generation. Projecting our side effects onto them is just not only unfair but not based on current reality.
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