HIV AIDS Stigma and education

HIV+ Not a Death Sentence Anymore

As I sat down to write about this subject this morning I thought about coming at this from a historical viewpoint and going over the treatments of the 80′s and 90′s to that of today. But the fact of the matter is in hindsight it is unfair to compare those times to now, because back in the early 80′s doctor’s didn’t know or understand what they were fighting and trying to treat. As time went on and a greater understanding was reached by the healthcare industry and researchers new and better treatments were created. My own doctor confided in me just last week that the only regret he has in his entire medical profession was how he treated early patients with HIV and AIDS because he said he probably killed more than he helped. It is a sobering thought to look back at those times and wonder if the treatments killed my friends or the actual disease itself. I have been luckier than most I got infected later in my life, I was already in my late 30′s (37 years old in fact) when I was diagnosed. I lost some very close friends who were in their 20′s back in the 80′s and 90′s. It seemed to me that I found out someone was diagnosed and the next thing I knew I was going to a funeral a couple months later. The disease sure took it toll and I think a lot of us can relate to the horror and death that our friends and loved ones went through.

Now, almost 20 years has passed since the disease was thrust upon the world by the acknowledgement of Ronald Reagan that his long time friend Rock Hudson had the disease and money was funneled into research and development for a cure, the newly formed CDC at the head trying to get a handle on the breadth and scope of this thing that until this time was know as the “Gay Cancer” or some other nomenclature that made it out to seem like this disease was solely the responsibility of the gay community. However, it didn’t take very long for the disease to propagate and migrate to any sexual oriented group. It was no longer contained in the Gay World, it became the world’s problem. But I digress here with that brief history side note. What I am trying to say is this that with the changing times and the mounting numbers of infection, new treatments and research were fueled and encouraged at every level of our society. Though some of the fervor has died down a little there is still a driving need for new research and treatment options still today. Pharmaceutical companies are coming out with new drugs every couple of months.

Research has made it possible for an individual who has been infected with HIV to live a relatively normal life for up to 30 maybe even 40 years now versus the standard 10 years that was given to newly infected people in the late 90′s. But here is where I want to encourage you if you are infected to become proactive in your healthcare and treatment options, talk to your infectious disease doctors get involved with your treatment, learn the side affects of your cocktail. Be active in your participation of your health because you know your body better than anyone else and will know when something isn’t going right. By staying up on you health and being active in your treatment plan you and your doctor can work together to put together an appropriate regimen of exercise and nutrition that will help keep you undetectable and your t-cells high.

Any indication that you might display needs to be taken to your doctor immediately. I will give you a good example of why in a minute. I would also like to put out a word of warning for those of you who like to party and experiment and utilize recreation drugs. Be aware that your recreational drug use might hide or mask some of the counter indications you might be having to your retro-viral treatments. In other words you may not even realize you are having problems until it is too late. Here is my story, as you are well aware if you have been following my blog for any length of time you know that I had a long term addiction to Methamphetamine, which started way before I was ever diagnosed with HIV. I originally started smoking it and within a few years had moved to shooting it, which believe it or not is how I got HIV, my syringe got mixed up with my ex and he was positive and I wasn’t and there it was I got infected. Now, because of my addiction and the amount of meth I was doing, I wasn’t aware that the Atripla the drug I was given to fight my HIV was doing anything to my body. See meth has a tendency to dehydrate you and that of course affects the kidneys well Atripla also is hard on the kidneys and the doctors should be monitoring your kidney functions while you are taking it. The problem came into play when I didn’t admit to my doctor about my recreational drug use, the kidney levels were always off when I was tested. It wasn’t until I got kidney stones that I realized that I had problems. Now another word of caution, when kidney stones form for a person using meth they are almost indestructible have a smooth edge and a jagged edge and can easily get stuck inside. So be careful when mixing your recreational drugs with your HIV cocktail because you could end up with some really adverse conditions. Also be aware of the side effects of your HIV regimen because they might affect certain organs like the kidney’s. Or you might be like me and be allergic to a component of your drugs and not even be aware of it. See my viral load was undetectable and my t-cell count was in the 600′s so I had no idea with my meth usage that I was allergic to the ritonivir component which is the base of Atripla and my kidney function was being compromised by the actual drug and the recreational usage as well. I went through catastrophic renal failure several times and let me tell you that it is painful.

My point in all of this is if you are an active participant in your treatment and are working with your doctors and get tested regularly you will notice any changes in your health and behavior before they can do permanent damage to your system if something goes wrong. In October of 2011 when the kidney stones formed I was totally unaware of my allergy to the ritonivir, I was taken off my Atripla regimen right away to stop the progression of renal disease, however, I continued to party and do the meth, so my kidney function never stabilized. When I came to Florida and I had given up the meth and wanted to go back on the antivirals and the retroviral medication for my HIV, the VA doctors looked at the kidney function and decided to test and see which components were making my kidneys worse. That is when it was discovered that I was allergic to the base component of Atripla, so I was taken off any type of medication that might have ritonivir in it. Happily I can report that my kidney functions have returned to normal and I am a-okay! My viral load is back to undetectable and my t-cell count is climbing back up. I am back in the 390′s where I was down to 289 at one point.

It has been 6 years with HIV and not one HIV related illness. I have been told that under the current regimen that I am following that I can expect at least 30 more years of continued good health. I do take a daily multivitamin and I eat right. I get myself tested every 90 days to see what my viral load and t-cell count is, and I am an active participant in my healthcare plan. I talk to my doctors and my infectious disease doctors regularly and I keep them all apprised of what the other is doing. I let each one know if there are any changes in my medicines or medical history that they need to be aware of. I also have the advantage that I was diagnosed with Large Cell Lymphoma back in 1992 and became very intimate with all the details of my body. So when I got sick with HIV I was already familiar with my body and knew when things felt awry.

I would encourage you to speak candidly with your doctors let them know what you are doing even the stuff you do for recreation purposes, it just might make the difference in your health. So again, be proactive in your treatment plan and healthcare and let the doctors know when something isn’t feeling right it might give them the edge they need to fix a problem before it becomes worse. Don’t be afraid to speak up if you think something isn’t going right with you. Stay on top of your situation, get tested regularly and be the main part of your healthcare plan. Because it is you who will make the difference in the long run. Remember even though you have been diagnosed with HIV you still have a long life ahead of you and make every effort to get every year out of it.

As always my hopes and dreams are with you,

Uncle B


Originally posted at Bryan Zepp’s blog

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