UPDATE - PART 2
Well, last night I told you about how and what has happened to put me where I am today. Here I will try to expain what may happen if and when and what the doctors choose to treat me with.
I return to Houston next Friday and will hopefull find out that my doctors (both the regular and co-reps) have figured out what and how to treat me. The problems up to now is this. There is no EASY cure for me. My body is for the most part, immune to almost any and all normal antibiotic treatments, since after all the hospital stays, health scares, and illnesses, I have been treated with almost everything that would normally cure the regular patient, but does nothing to me. That said, it means that I am in that small percentile that responds only to radical or massive types of medications that might help.
The two treatments my doctors are looking at now seem to have been narrowed down to a radical medication that is used to treat patients of organ transplants. The medicine is an anti-rejection type drug. It is extraordinarily strong and the side effects are also severe. The worst side effect will be that it will destroy what small tiny part of an immune system that I still have managed to maintain. This means that a simple cold could very easily kill me if I'm not careful. It is because of this treatment that I am not under the care of two different department heads in Houston Medical University system and Hermann Hospital. Dr. Smith and Dr Maus are wound care specialist, while Dr. Bangert is the head of the Dermatology/physical medicine section. Both sides agree that this treatment is a drastic one, but in all reality, it seems to be the only one that might actually work.
The second treatment, and one that my mother leans toward, and she asked the doctors about it, is MASSIVE MASSIVE steroid treatments again since as she puts it,....."it worked the first time this happened and wouldn't it be okay again?" I had to explain to Mom that yes, it did work the first time, but this treatment would have the same effect that the one above would. It too would kill off what little immune system I manage to have left. She didn't understand, and I told her, that if she thought about it, how sick I was when I was 19, same sort of risks, also dying from this unknown disease, that the steroids were drastic, and yes, they did work.....BUT THEY TOO DID THE SAME THING BACK THEN....THEY DESTROYED MY IMMUNE SYSTEM. That's why I have spent these last 30 years in and out of hospitals with pneumonias, sepsis, one thing after another going wrong enough to almost kill me.
I know that my mother is scared to death as is Tracy, and I suppose as am I. But part of me just shrugs and says, well, what happens, happens. If I'm gonna die, then I will. The only irony I find is that the first illness I ever had and that almost did the job 30 years ago.... is finally getting its chance to finish the job. I know that Tracy and Mom don't want to hear me say that I'm even contemplating the chance of dying, but strangely enough, the dying itself is not what scares or worries me. It's leaving them, and Ashley, not to mention my pets, without me to take care of things, to make sure it's all okay.
Okay, that is about it for my health except the usual stuff, so I'm gonna let ya'll go again for now. I'm not lazy, but I do tire very easily and need to go lie down again and take a nap again. I'll be back in a few hours and will tell what is going on in general and how much I miss Tracy and Ashley, and how silly things are at times. I love you guys.....talk to you again soon. TTFN
I return to Houston next Friday and will hopefull find out that my doctors (both the regular and co-reps) have figured out what and how to treat me. The problems up to now is this. There is no EASY cure for me. My body is for the most part, immune to almost any and all normal antibiotic treatments, since after all the hospital stays, health scares, and illnesses, I have been treated with almost everything that would normally cure the regular patient, but does nothing to me. That said, it means that I am in that small percentile that responds only to radical or massive types of medications that might help.
The two treatments my doctors are looking at now seem to have been narrowed down to a radical medication that is used to treat patients of organ transplants. The medicine is an anti-rejection type drug. It is extraordinarily strong and the side effects are also severe. The worst side effect will be that it will destroy what small tiny part of an immune system that I still have managed to maintain. This means that a simple cold could very easily kill me if I'm not careful. It is because of this treatment that I am not under the care of two different department heads in Houston Medical University system and Hermann Hospital. Dr. Smith and Dr Maus are wound care specialist, while Dr. Bangert is the head of the Dermatology/physical medicine section. Both sides agree that this treatment is a drastic one, but in all reality, it seems to be the only one that might actually work.
The second treatment, and one that my mother leans toward, and she asked the doctors about it, is MASSIVE MASSIVE steroid treatments again since as she puts it,....."it worked the first time this happened and wouldn't it be okay again?" I had to explain to Mom that yes, it did work the first time, but this treatment would have the same effect that the one above would. It too would kill off what little immune system I manage to have left. She didn't understand, and I told her, that if she thought about it, how sick I was when I was 19, same sort of risks, also dying from this unknown disease, that the steroids were drastic, and yes, they did work.....BUT THEY TOO DID THE SAME THING BACK THEN....THEY DESTROYED MY IMMUNE SYSTEM. That's why I have spent these last 30 years in and out of hospitals with pneumonias, sepsis, one thing after another going wrong enough to almost kill me.
I know that my mother is scared to death as is Tracy, and I suppose as am I. But part of me just shrugs and says, well, what happens, happens. If I'm gonna die, then I will. The only irony I find is that the first illness I ever had and that almost did the job 30 years ago.... is finally getting its chance to finish the job. I know that Tracy and Mom don't want to hear me say that I'm even contemplating the chance of dying, but strangely enough, the dying itself is not what scares or worries me. It's leaving them, and Ashley, not to mention my pets, without me to take care of things, to make sure it's all okay.
Okay, that is about it for my health except the usual stuff, so I'm gonna let ya'll go again for now. I'm not lazy, but I do tire very easily and need to go lie down again and take a nap again. I'll be back in a few hours and will tell what is going on in general and how much I miss Tracy and Ashley, and how silly things are at times. I love you guys.....talk to you again soon. TTFN