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
Showing posts with label viral load. Show all posts
Showing posts with label viral load. Show all posts
Saturday, August 11, 2012
Tuesday, July 10, 2012
Thought you might like an update....
For those of you who don't follow me on Facebook, I figured I would give you an update on my status and why I haven't written much in the past 2 weeks. For those of you that do follow me on Facebook this might be a little repetitive and for that I apologize. However, you might find out a little more here since space is sort of limited on Facebook as to what I can post.
Anyhow, July 3rd, I decided to buy a scooter as a mode of transportation to get to and from different events. I figured this would give me a little more independence and give my parents some slack in running me around. But as usual if it wasn't for bad luck I wouldn't have any luck, and no matter how much planning I seem to do to accomplish a task, something inevitably goes wrong every time. So I shouldn't be at all surprised that as soon as I paid for the thing disaster was poised to strike. Now, you must keep in mind that my father was against me getting this thing from the very beginning and as such has been almost unbearable to live with because of the "I told you so's" and "You never listen to anything I have to say".
Now, not even 10 minutes after I paid for the darn thing, I decided to take a spin around the block just to check it out, I was turning around in a little apartment complex and was sitting at the stop sign waiting to turn right. Just as I was beginning to go I felt a jolt from behind and the scooter went out of control and started heading for the ditch on the opposite side of the street. The bad thing is as it was heading toward the ditch, it tipped to the left and I was pinned underneath it as it slid across the pavement. Needless to say I have lacerations and cuts from top of my head to my foot along the whole left side of my body. I also broke my ankle in this endeavor. Before I knew what was happening I flagged down a car and asked them to help me, I knew my head was bleeding but I didn't think I was hurt very badly. As a matter of fact I kept insisting I was fine as they were trying to strap me down to a backboard. Now, 2 officers responded to the scene and an ambulance and fire truck, and within minutes I was whisked away to the hospital.
After what seemed like forever, I was examined by the doctor and taken off the backboard, and laid on the bed to get more comfortable. Now, you all know me and I am a crazy person, I do things that are risky all the time but this wasn't something that I thought was a risk at all. I was wrong, if you want to know more about that look at my blog entry on "Advice Freely Given". All I can say at this point is I am glad I am alive and I wasn't hurt more than I was. Because I just had surgery on June 18th and I had staples from my breast bone to my groin, and honestly I had no business driving let alone being on a scooter. All that being said, the staples were examined and removed on Friday the 6th of July and everything was fine until Sunday morning. When I woke up I felt a sharp pain and itching sensation in my abdomen and when I looked 3 sutures had worked their way to the surface of my incision line. I went to the surgeon today and found out that they are there because when he operated on me he had to cut the muscles and tissue to remove scar tissue and adhesion's that had formed from all my previous surgeries and these sutures are to hold the muscle and tissue in place so they heal properly.
The ends were very sharp and that is what was cutting and scratching my skin and causing me some discomfort. The bad news was he was unable to remove the sutures because it is still too early and the healing isn't complete. He told me that the knots had to stay in for at least another month. He also told me to not be alarmed if they broke through the incision and came to the surface over time. He was able however to cut the ends off the knots so that they would no longer irritate my skin and tissue and with that being done, I should start to feel better soon. Directly after leaving the surgeon's office, I went to the orthopedic surgeons office to have my ankle evaluated and was delighted to find out that the actual break wasn't as bad as I had first thought.
I was able to have a walking cast put on, and told that it should only have to stay in place for 4 weeks which is another great piece of news because originally I was told I would be off my foot entirely for the next 12 weeks. I am probably going to have a lot of scaring because of the abrasions I sustained in the accident but overall I things are definitely looking better than first thought. Now I am hoping that tomorrow when I go to see the scooter and the damage from the accident the same will be true there as well. I know my parents are totally against me getting the thing fixed and riding it, and I am not sure I would be brave enough to get back on it right away. But like anything else in my life, I am not going to let it get me down and hold me back. So regardless of what they have to say, my intention is to get it repaired and fixed up the way I want it. From that point if I want to sell it or keep it the choice is mine. See, I set myself on this course and the end result is still the same. Even though they are mad and think I have wasted the money I have. The fact of the matter is I made the choice now, I have to live with it. From my point of view when you are handed lemons, make lemon aide, further I refuse to look at this as a negative, I find it easier to deal with the turmoils in my life when I can find the positive in the events that have taken place.
I wish everyone could do that and not dwell on the "I told you so's" and "why don't you listen" and "I was right and you were wrong" because frankly that just causes hard feelings and doesn't really accomplish anything. As with all things in my life I will get over it and I have learned something along the way. I find that humans learn better by failing and getting hurt than by not trying at all. Pain gives us the impetus to keep from making the same mistake twice, and trust me I now know what I am doing and will be on guard against it from happening again. Plus, it is ridiculous to think that an accident is something that was ordained. It wasn't planned hence calling it an accident, and guess what I am still alive and the material possession can be fixed or replaced. How could I have possibly have known that I was going to get hit by someone and that all of this would have transpired? I couldn't and even if I had a crystal ball and divine guidance I probably only would have seen probable futures, because until the events actually unfold many different variables come into play.
Like I said I will not let this get me down or defeat me, and no matter how my parents treat me because of this situation I am still going to do what I think is best. I keep in mind that everyone makes mistakes and my favorite analogy springs to mind "Shit Happens". It is time to keep my head up and keep moving forward, because as my best friend would say "So What, Who Cares, Get over it!"
For some other good news, I spent the day in Orlando yesterday with the VA. Met with the infectious disease doctor, and my HIV viral load is back to undetectable and my CD4 count is 298 and climbing. Further, there have been no complications to the Hep C, and it looks like the treatment is going to eradicate the disease from my body totally without permanent damage. In other words, even though my surgery didn't go quite as expected, my body has begun fighting for itself and is doing a great job of putting everything in check. They have also down graded my renal disease from stage 4 to stage 2 and it is steadily improving, there is only going to be a slight impairment. My damaged kidney has somehow found new life and is responding well to drinking of water and the new medications I have been given. Maybe by September they will have fixed the kidneys sufficiently to say that the renal disease is in remission.
Now keep in mind that all of this is being accomplished because so many people out there are praying for my recovery, and I know that God is answering those prayers, and I am thankful beyond all understanding for that. When I came to Florida, I had come home to die, and now it looks like things are finally starting to turn around and I will be granted more time. I know I can't hope for 10 more years, but 3 to 5 sounds good too me.
Anyhow, sorry I haven't been writing as much, just been in a lot of pain and under the influence of some pretty hefty drugs. I do plan on getting back to working on my blog daily starting tomorrow. I hope you all will keep on reading. You never know what you are going to find here. I live a very exciting life and I can promise you my days are far from boring.
As always my hopes and dreams are with you.
Uncle B
Anyhow, July 3rd, I decided to buy a scooter as a mode of transportation to get to and from different events. I figured this would give me a little more independence and give my parents some slack in running me around. But as usual if it wasn't for bad luck I wouldn't have any luck, and no matter how much planning I seem to do to accomplish a task, something inevitably goes wrong every time. So I shouldn't be at all surprised that as soon as I paid for the thing disaster was poised to strike. Now, you must keep in mind that my father was against me getting this thing from the very beginning and as such has been almost unbearable to live with because of the "I told you so's" and "You never listen to anything I have to say".
Now, not even 10 minutes after I paid for the darn thing, I decided to take a spin around the block just to check it out, I was turning around in a little apartment complex and was sitting at the stop sign waiting to turn right. Just as I was beginning to go I felt a jolt from behind and the scooter went out of control and started heading for the ditch on the opposite side of the street. The bad thing is as it was heading toward the ditch, it tipped to the left and I was pinned underneath it as it slid across the pavement. Needless to say I have lacerations and cuts from top of my head to my foot along the whole left side of my body. I also broke my ankle in this endeavor. Before I knew what was happening I flagged down a car and asked them to help me, I knew my head was bleeding but I didn't think I was hurt very badly. As a matter of fact I kept insisting I was fine as they were trying to strap me down to a backboard. Now, 2 officers responded to the scene and an ambulance and fire truck, and within minutes I was whisked away to the hospital.
After what seemed like forever, I was examined by the doctor and taken off the backboard, and laid on the bed to get more comfortable. Now, you all know me and I am a crazy person, I do things that are risky all the time but this wasn't something that I thought was a risk at all. I was wrong, if you want to know more about that look at my blog entry on "Advice Freely Given". All I can say at this point is I am glad I am alive and I wasn't hurt more than I was. Because I just had surgery on June 18th and I had staples from my breast bone to my groin, and honestly I had no business driving let alone being on a scooter. All that being said, the staples were examined and removed on Friday the 6th of July and everything was fine until Sunday morning. When I woke up I felt a sharp pain and itching sensation in my abdomen and when I looked 3 sutures had worked their way to the surface of my incision line. I went to the surgeon today and found out that they are there because when he operated on me he had to cut the muscles and tissue to remove scar tissue and adhesion's that had formed from all my previous surgeries and these sutures are to hold the muscle and tissue in place so they heal properly.
The ends were very sharp and that is what was cutting and scratching my skin and causing me some discomfort. The bad news was he was unable to remove the sutures because it is still too early and the healing isn't complete. He told me that the knots had to stay in for at least another month. He also told me to not be alarmed if they broke through the incision and came to the surface over time. He was able however to cut the ends off the knots so that they would no longer irritate my skin and tissue and with that being done, I should start to feel better soon. Directly after leaving the surgeon's office, I went to the orthopedic surgeons office to have my ankle evaluated and was delighted to find out that the actual break wasn't as bad as I had first thought.
I was able to have a walking cast put on, and told that it should only have to stay in place for 4 weeks which is another great piece of news because originally I was told I would be off my foot entirely for the next 12 weeks. I am probably going to have a lot of scaring because of the abrasions I sustained in the accident but overall I things are definitely looking better than first thought. Now I am hoping that tomorrow when I go to see the scooter and the damage from the accident the same will be true there as well. I know my parents are totally against me getting the thing fixed and riding it, and I am not sure I would be brave enough to get back on it right away. But like anything else in my life, I am not going to let it get me down and hold me back. So regardless of what they have to say, my intention is to get it repaired and fixed up the way I want it. From that point if I want to sell it or keep it the choice is mine. See, I set myself on this course and the end result is still the same. Even though they are mad and think I have wasted the money I have. The fact of the matter is I made the choice now, I have to live with it. From my point of view when you are handed lemons, make lemon aide, further I refuse to look at this as a negative, I find it easier to deal with the turmoils in my life when I can find the positive in the events that have taken place.
I wish everyone could do that and not dwell on the "I told you so's" and "why don't you listen" and "I was right and you were wrong" because frankly that just causes hard feelings and doesn't really accomplish anything. As with all things in my life I will get over it and I have learned something along the way. I find that humans learn better by failing and getting hurt than by not trying at all. Pain gives us the impetus to keep from making the same mistake twice, and trust me I now know what I am doing and will be on guard against it from happening again. Plus, it is ridiculous to think that an accident is something that was ordained. It wasn't planned hence calling it an accident, and guess what I am still alive and the material possession can be fixed or replaced. How could I have possibly have known that I was going to get hit by someone and that all of this would have transpired? I couldn't and even if I had a crystal ball and divine guidance I probably only would have seen probable futures, because until the events actually unfold many different variables come into play.
Like I said I will not let this get me down or defeat me, and no matter how my parents treat me because of this situation I am still going to do what I think is best. I keep in mind that everyone makes mistakes and my favorite analogy springs to mind "Shit Happens". It is time to keep my head up and keep moving forward, because as my best friend would say "So What, Who Cares, Get over it!"
For some other good news, I spent the day in Orlando yesterday with the VA. Met with the infectious disease doctor, and my HIV viral load is back to undetectable and my CD4 count is 298 and climbing. Further, there have been no complications to the Hep C, and it looks like the treatment is going to eradicate the disease from my body totally without permanent damage. In other words, even though my surgery didn't go quite as expected, my body has begun fighting for itself and is doing a great job of putting everything in check. They have also down graded my renal disease from stage 4 to stage 2 and it is steadily improving, there is only going to be a slight impairment. My damaged kidney has somehow found new life and is responding well to drinking of water and the new medications I have been given. Maybe by September they will have fixed the kidneys sufficiently to say that the renal disease is in remission.
Now keep in mind that all of this is being accomplished because so many people out there are praying for my recovery, and I know that God is answering those prayers, and I am thankful beyond all understanding for that. When I came to Florida, I had come home to die, and now it looks like things are finally starting to turn around and I will be granted more time. I know I can't hope for 10 more years, but 3 to 5 sounds good too me.
Anyhow, sorry I haven't been writing as much, just been in a lot of pain and under the influence of some pretty hefty drugs. I do plan on getting back to working on my blog daily starting tomorrow. I hope you all will keep on reading. You never know what you are going to find here. I live a very exciting life and I can promise you my days are far from boring.
As always my hopes and dreams are with you.
Uncle B
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