It is once again that time for me to give you all an update on my health and status. I met with the doctors at the VA on Friday to talk about the upcoming surgery and the things that are going to be necessary to get it done. Found out that I am going to probably have to go to the Tampa VA hospital in order for the surgery to take place because of how complicated my case is. Because I have to be referred all over the VA system in order for this to happen, it is going to take a little while for all the appointments to come together. Not to mention that the VA isn't noted for how fast it moves in such cases. Once this surgery is done and they address the fact that my stoma has started to detach from the abdomen wall then it is on to a 48 week round of chemotherapy. Now they have to wait till after the surgery because the chemo will affect my clotting ability and my white cell counts, my body will be in a repressed immune state and any invasive procedure after it starts would open me up to infection.
My viral load and T-cells are back to undetectable and normal range for a healthy person, so I am happy that we have that under control. We are finally working on getting the kidney functions back to where they need to be. I have been bouncing back and forth between stage 2 chronic renal disease and stage 3, but the new treatment plan should have that eradicated by the end of next month. Liver functions are holding their own and the Hep C is not doing any damage thus far. Overall besides the issues I am having with my colon and abdomen I am doing remarkably well. I am feeling a lot better.
As most of you are aware I have been in my new place for a little over 2 weeks and things keep falling in line that are helping me with the situation that I am in and I am grateful that I am being so blessed and favored with such goodness. I have even joined a church home and doing some meaningful work with them and also volunteering some of my time and energy to that cause. I am still without furniture but have a few things to follow up on that might prove fruitful and help me in that area.
I finally heard from Kerry and Tony both and they are doing well. Kerry is going to have surgery on Tuesday and I would ask that you keep him in your thoughts and prayers. Tony is struggling right now and dealing with a lot of mental and emotional stress and is still out there suffering on the streets. I am hoping that I might be able to help him with that situation soon. I talked to him for the first time since I came back from Atlanta back in September. I am so glad to hear form him, I have been really worried I had heard that he was in the hospital and some other things. Maybe I can finally get him down here and off the street for a little while.
Please read my blog entries on Suicide they are very important to me and I will be rounding out the series with what warning signs to look for and what protective factors we can use to help those that are in crisis.
As always my hopes and dreams are with you,
Uncle B
Showing posts with label CD4 count. Show all posts
Showing posts with label CD4 count. Show all posts
Saturday, October 27, 2012
Sunday, July 22, 2012
It's time again for another health update.
Figure since I have been keeping you all apprised to my health situation I should probably give you an update. I had a busy week health wise and it is time to share with you what is going on. On the surface it may seem like it isn't a big change, but to me I believe significant and wonderful things are happening.
On Tuesday, I had the staples removed from my head, if you remember correctly they were put there because of the accident that I was involved in on July 3rd. Contrary to popular belief, they tell me I still have a brain, that nothing had seeped out of the wound. Though I still experience the dizziness and becoming light headed at times, they say that the damage from the concussion is fading some. Leg still in a cast, though they tell me that I should be able to have that removed around the 8th of August, which in the grand scheme of things is nothing. Approximately 15 days away or so. Which means that I have made it half-way through this ordeal.
Now, in my last update I filled you in on the fact that Viral load and CD4 count were looking good, and that I was having problems with sutures rupturing through my incision line. Well, that is still the case, I have had 2 more bust through and the edges trimmed off of all of them. The problem is that apparently the sutures are put in place to hold my insides in. It takes the muscles and tissues in the abdomen quite awhile to nit back together, and the sutures were placed inside to ensure that everything healed properly. Here is the problem, my body is rejecting the sutures and they are all busting through. So it looks like on September 11, 2012 I will have to undergo some kind of procedure to remove the sutures from my body. Because until they are removed the wound will not heal properly. As of today, the wound has gotten reinfected and it looks like I am going to have go back on antibiotics to fight it.
Like I told you before everything else is starting to function and act right under the new treatments and that is awesome news! THANK YOU FOR THE PRAYER! It is because of the constant prayer and support that each and everyone of you give to me that has allowed me to progress this far. The words of encouragement and emails, and well wishes, that you each send and put on Facebook help lighten my load and brighten my days. So thank you again for that.
Finally life is getting back to normal for me and it honestly looks like this crisis might actually pass. With my kidney functions returning to more normal state, it looks like the predictions of me passing away before Christmas are not going to happen. I am glad for that, and it opens my life up to a whole new realm of possibilities and thoughts for the future. I hope that you will continue to stay in touch with me and keep me in your thoughts and prayers. As I have learned, health can be a funny and tricky thing that changes it's mind on you in the blink of an eye. So healthy today, turn for the worst tomorrow, however, I rather hope for the best and plan for the rest as it happens. I don't put too much stock in worrying about the future anymore.
It is unfortunate that the first round of HIV meds caused irreparable damage to my kidneys and liver, they will never function at 100 percent again, but I can live with 95 and 80 percent. I have been told that people survive on much worse percentages. I know some that have only one kidney and are doing fine.
If you have been keeping up with my blog and reading my entries you can see that Positive Mental Attitude (PMA) is everything when battling a terminal or multiple terminal illness's. I plan on working on further entries on what I have learned and experienced as I have traveled the road of illness and how it has helped transform the way that I look at things. I hope you will keep on reading.
Over the next couple of days, I will be editing my previous entries and adding labels and search descriptions to each entry. This may take away from my writing a new entry every day for this week, but I honestly think it will help other people find what I am writing and discover the lessons I am talking about.
So I hope you will bear with me as I make these updates, and know that I will still be posting around the editing.
As always my hopes and dreams are with you,
Uncle B
On Tuesday, I had the staples removed from my head, if you remember correctly they were put there because of the accident that I was involved in on July 3rd. Contrary to popular belief, they tell me I still have a brain, that nothing had seeped out of the wound. Though I still experience the dizziness and becoming light headed at times, they say that the damage from the concussion is fading some. Leg still in a cast, though they tell me that I should be able to have that removed around the 8th of August, which in the grand scheme of things is nothing. Approximately 15 days away or so. Which means that I have made it half-way through this ordeal.
Now, in my last update I filled you in on the fact that Viral load and CD4 count were looking good, and that I was having problems with sutures rupturing through my incision line. Well, that is still the case, I have had 2 more bust through and the edges trimmed off of all of them. The problem is that apparently the sutures are put in place to hold my insides in. It takes the muscles and tissues in the abdomen quite awhile to nit back together, and the sutures were placed inside to ensure that everything healed properly. Here is the problem, my body is rejecting the sutures and they are all busting through. So it looks like on September 11, 2012 I will have to undergo some kind of procedure to remove the sutures from my body. Because until they are removed the wound will not heal properly. As of today, the wound has gotten reinfected and it looks like I am going to have go back on antibiotics to fight it.
Like I told you before everything else is starting to function and act right under the new treatments and that is awesome news! THANK YOU FOR THE PRAYER! It is because of the constant prayer and support that each and everyone of you give to me that has allowed me to progress this far. The words of encouragement and emails, and well wishes, that you each send and put on Facebook help lighten my load and brighten my days. So thank you again for that.
Finally life is getting back to normal for me and it honestly looks like this crisis might actually pass. With my kidney functions returning to more normal state, it looks like the predictions of me passing away before Christmas are not going to happen. I am glad for that, and it opens my life up to a whole new realm of possibilities and thoughts for the future. I hope that you will continue to stay in touch with me and keep me in your thoughts and prayers. As I have learned, health can be a funny and tricky thing that changes it's mind on you in the blink of an eye. So healthy today, turn for the worst tomorrow, however, I rather hope for the best and plan for the rest as it happens. I don't put too much stock in worrying about the future anymore.
It is unfortunate that the first round of HIV meds caused irreparable damage to my kidneys and liver, they will never function at 100 percent again, but I can live with 95 and 80 percent. I have been told that people survive on much worse percentages. I know some that have only one kidney and are doing fine.
If you have been keeping up with my blog and reading my entries you can see that Positive Mental Attitude (PMA) is everything when battling a terminal or multiple terminal illness's. I plan on working on further entries on what I have learned and experienced as I have traveled the road of illness and how it has helped transform the way that I look at things. I hope you will keep on reading.
Over the next couple of days, I will be editing my previous entries and adding labels and search descriptions to each entry. This may take away from my writing a new entry every day for this week, but I honestly think it will help other people find what I am writing and discover the lessons I am talking about.
So I hope you will bear with me as I make these updates, and know that I will still be posting around the editing.
As always my hopes and dreams are with you,
Uncle B
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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