So I have come to a decision on what to do about my Dr. I am going to wait until my appt. on the 23rd to talk to him. That will only be a month and half since my last lab work. I will tell him I will meet him half way. He wants to wait 3 months but I am willing to wait the month and a half. I will tell him to do my labs again on the 23rd. If my viral load is going down at that point I will wait the rest of the 3 months. But if the lab work comes back showing an increase I will tell him I want to start treatment now. But if he is not willing to meet half way then I guess I will need to start looking for a new Dr. The only problem I have with that is by the time I have a new Dr. and get in to see them and get my new labs back I will probably be at the 3 month mark. So that little bit right there has me also going back a forth on looking for the new Dr. This all just sucks so badly. But to be honest I don’t see why the Dr. would not meet me half way.
And I don’t know why but I have a really good feeling that my next labs are going to come back pretty good. I just hope I am not setting myself up for disappointment. It is just so hard to not get my hopes up when I read all the research about clearing this thing on my own. I meet all the specs on people who have cleared it on their own. I mean not all do but most of the people who got as bad as I did during the acute phase of this disease had spontaneous clearance. So why couldn’t I be one of those people. It is just driving me crazy to not have any new lab work and know for sure what the hell is going on with my body. It is a damn good thing this Dr. is out of town or I would be driving him up the wall.
The not knowing really is the hardest part of all of this. I mean I feel great now but that really dose not mean a damn thing. With this stupid thing you can feel great and still have the disease. This thing eats at your body slowly and you have no clue you are even sick. I was just a small percentage of people who got lucky enough to have sings when it all started. Most are not that lucky and have no clue they have this virus eating away at them. I am truly lucky to have gotten so sick and catch it when I did. But I also wonder sometimes if knowing is worse then not knowing.
Monday, March 31, 2008
Wednesday, March 26, 2008
Don't know what to do
Last week my Dr. was already to start me right up with treatment. This week he has changed his mind and I am not sure how comfortable I am with his new decision. He now wants to wait 3 months to see if by some chance I clear this on my own. And yes I do know there is a small chance for that. But also with the research I have read the sooner we start while I am acute the better my chances of clearing this.
I have also read research that says because I am female, under 40 and went as far to show severe jaundice (billiruban level of 6.9) that my chance of spontaneous clarence is even a little higher. But I am feeling why take the chance because if I don’t clear it on my own then my chances of clearing this at all are lowered. I am just not sure what to do with his new decision. I have a follow up appt. with him to discuss all of this on April 23rd. He is going out of town and this is the soonest I could get in.
Should I just wait until April 23rd to talk with him or start looking for a new doctor? I mean on one hand I really don’t want to take the treatments unless I really have to. But I also don’t want to wait to long and take the chance of lowering my clearance chances. I mean right now I only have a really low viral load. That I think would put me at a great chance to kick this thing. And I did want the doctor to check my labs one more time before we started treatments just to make sure I did not clear this by some chance. But I don’t think I want to wait it out for 3 months.
I am really confused and have so much just swirling around in my head.
I have also read research that says because I am female, under 40 and went as far to show severe jaundice (billiruban level of 6.9) that my chance of spontaneous clarence is even a little higher. But I am feeling why take the chance because if I don’t clear it on my own then my chances of clearing this at all are lowered. I am just not sure what to do with his new decision. I have a follow up appt. with him to discuss all of this on April 23rd. He is going out of town and this is the soonest I could get in.
Should I just wait until April 23rd to talk with him or start looking for a new doctor? I mean on one hand I really don’t want to take the treatments unless I really have to. But I also don’t want to wait to long and take the chance of lowering my clearance chances. I mean right now I only have a really low viral load. That I think would put me at a great chance to kick this thing. And I did want the doctor to check my labs one more time before we started treatments just to make sure I did not clear this by some chance. But I don’t think I want to wait it out for 3 months.
I am really confused and have so much just swirling around in my head.
Monday, March 24, 2008
I am now in pushy patient mode
I have decided that today I am going to call my Doctor and have him run my labs again before we start treatment. There is a chance that my body could clear this virus on it’s own. The chance is small but it is there. So before I go sticking my self with a needle I want to make sure we really have to do it.
They told me it could take up to a month to get my meds it all depends on how friendly my insurance company is. They told me most of the time the insurance company gives them a hard time and they have to jump through hoops to get the meds. I also have questions about the meds.
The meds have to be kept cold and they mail these meds to you. So what happens when they deliver the meds while I work and the box sits out all day in the Florida sun. So I need to see if I can have them shipped to my work or to my mother’s house where somebody is home all day.
I have a feeling I am going to drive these doctors crazy. I am not one just to sit back and let them make all the calls. I am very proactive when it comes to my health and I will question them on things and let them know what I think is best for me. After doing tons of research I already know more then the Doctors nurse practitioner. I told him to never have her speak to me again she is just an idiot. She would tell me something so wrong and I would correct and she would argue with me. Then the Doctor came in and confirmed I was right on everything I had said and she was wrong. She had better go back to school because she is about to get schooled by me. The stupid patient who knows more then she does. Maybe I should ask for her job.
So when the Doctor’s office opens at 9:00am I will start my calling. And the Dr. had better call me back fast or I will drive them up the wall.
They told me it could take up to a month to get my meds it all depends on how friendly my insurance company is. They told me most of the time the insurance company gives them a hard time and they have to jump through hoops to get the meds. I also have questions about the meds.
The meds have to be kept cold and they mail these meds to you. So what happens when they deliver the meds while I work and the box sits out all day in the Florida sun. So I need to see if I can have them shipped to my work or to my mother’s house where somebody is home all day.
I have a feeling I am going to drive these doctors crazy. I am not one just to sit back and let them make all the calls. I am very proactive when it comes to my health and I will question them on things and let them know what I think is best for me. After doing tons of research I already know more then the Doctors nurse practitioner. I told him to never have her speak to me again she is just an idiot. She would tell me something so wrong and I would correct and she would argue with me. Then the Doctor came in and confirmed I was right on everything I had said and she was wrong. She had better go back to school because she is about to get schooled by me. The stupid patient who knows more then she does. Maybe I should ask for her job.
So when the Doctor’s office opens at 9:00am I will start my calling. And the Dr. had better call me back fast or I will drive them up the wall.
Thursday, March 20, 2008
Things are not good at all
The news my Dr. gave me today was not good. I have a blood disease and not only will I have to now see a hematologist but I will also have to do 6 months of a Chemo treatment to try and clear this virus from my blood. The treatment has some really bad side effects that could be so bad it could put me bed ridden during treatment and this really scares me. So thank you so much to those of you that have kept me in your thoughts and prays and could you please continue to do so. There is a chance that the treatment won’t work and I really don’t know what they would do at that point. I am scared and tired and don’t know who much more I can take.
Wednesday, March 19, 2008
Happy Easter
My post have been such downers for so long now. How about a happy post with a picture. I took the Kids Monday night to see the Easter Bunny. I have to say I really love the picture. It is a really good picture of both kids. I just wish K would have been sitting up straight. But other then that the picture is great. And I have to say I have two beautiful children.
Monday, March 17, 2008
Don't know how much more I can take
So this waiting until Thursday to see the Dr. is just killing. I want to know right now what in the hell is going on with me. I have good days and bad days with all of this. There are some days I just start thinking I am dieing and I get very depressed thinking about that and my children. I mean if something is really bad wrong with me I worry the most about my children. Just the thought of not being here to watch them grow up just sends me into a tail spin that is hard to get out of.
And sad to say Tom has not been a big help at all though all of this. One day he is super nice then the next right back to his same old self. Two times now he has started packing his bags and I did nothing to stop him. But he always backs out and stops packing. I told him yesterday after he started packing again that I would be better off dealing with all of this with out him. I don’t need his shit on top of all of this. I could have just knocked him out yesterday. He started his shit and I left and went to Target just to get away from him for a little bit. He calls me and says you need to come home and get the kids I am leaving. So I rush home to find both kids crying. I kneel down and ask K what is wrong. She tells me that Daddy is leaving and since you are not here he is going to leave us home alone. I think my head spun when she told me this. Why in the world would he say things like that to a 4-1/2 and 1-1/2 year old. What the hell is wrong with this man.
He then proceeds to say things once again right in front of the kids. I send them both outside to play and tell him once again there will never be a chance for us to fix things if he does not stop involving the children like this. I told him to quite pushing me or he would really regret more then he already does. So what does he do again right in front of K. He says I am not pushing anything. If I was pushing you then we would be in bed fucking the shit of each other. Again what the hell is going though his head. I wish I owned a cattle prod because I would just lay him out every time he said some stupid shit in front of the children. Then maybe he would learn to keep his mouth shut with them around.
I really don’t know how much more my mind can take with everything that is going on. I tried to tell him that right now I just need to focus on myself and find out what is going on with my health. I am not trying to get my hopes up to high but I have my fingers crossed that I just had some sort of Viral Hepatitis and the Virus has left and now I am all better. Because all Hepatitis means is that your liver is inflamed and some Viruses can cause that. Then my next hope is if that is the case that it did not cause any permanent damage to my liver. And now I just have to keep myself sane until my Dr. Thursday.
And sad to say Tom has not been a big help at all though all of this. One day he is super nice then the next right back to his same old self. Two times now he has started packing his bags and I did nothing to stop him. But he always backs out and stops packing. I told him yesterday after he started packing again that I would be better off dealing with all of this with out him. I don’t need his shit on top of all of this. I could have just knocked him out yesterday. He started his shit and I left and went to Target just to get away from him for a little bit. He calls me and says you need to come home and get the kids I am leaving. So I rush home to find both kids crying. I kneel down and ask K what is wrong. She tells me that Daddy is leaving and since you are not here he is going to leave us home alone. I think my head spun when she told me this. Why in the world would he say things like that to a 4-1/2 and 1-1/2 year old. What the hell is wrong with this man.
He then proceeds to say things once again right in front of the kids. I send them both outside to play and tell him once again there will never be a chance for us to fix things if he does not stop involving the children like this. I told him to quite pushing me or he would really regret more then he already does. So what does he do again right in front of K. He says I am not pushing anything. If I was pushing you then we would be in bed fucking the shit of each other. Again what the hell is going though his head. I wish I owned a cattle prod because I would just lay him out every time he said some stupid shit in front of the children. Then maybe he would learn to keep his mouth shut with them around.
I really don’t know how much more my mind can take with everything that is going on. I tried to tell him that right now I just need to focus on myself and find out what is going on with my health. I am not trying to get my hopes up to high but I have my fingers crossed that I just had some sort of Viral Hepatitis and the Virus has left and now I am all better. Because all Hepatitis means is that your liver is inflamed and some Viruses can cause that. Then my next hope is if that is the case that it did not cause any permanent damage to my liver. And now I just have to keep myself sane until my Dr. Thursday.
Thursday, March 13, 2008
Things seem to be worse then thought
So things with me have gone from bad to worse. The hospital referred me to a Gastro. Dr.. I now have the Gastro. Dr. confused from the results of my blood work from the hospital. He is not totally convinced I have hepatitis but there is something wrong with me. My Bilirubin, AST and ALT levels were way to high he said to be hepatitis. He said there is something wrong with me he just is not sure what is wrong. I went Monday and had 15 tubs of blood taken for him to run about 20 different test. He is trying to rule out just about everything. I have to say this has me very scared. I spent most of Monday thinking I am going to die. Let me just show how bad my levels came back from the hospital lab report.
Bilirubin 6.9 critical Normal Range 0.4 to 2.0
AST 895 critical Normal Range 14 to 32
ALT 2895 critical Normal Range 12 to 51
ALT is an insime your liver puts out when there is significant damage going on. He said even with patients with hepatitis these levels do not normally get this high.
So if you all could just keep me in your thoughts. I do not go back to the Gastro. Dr. until next Thursday. He hopes at that point all of my blood work will be back and he will know something. Some of the test he has done could take a week or two but he is hoping that all of them will be back at that point. But on one good note I am feeling so much better and my jaundice seems like it has gone away.
Bilirubin 6.9 critical Normal Range 0.4 to 2.0
AST 895 critical Normal Range 14 to 32
ALT 2895 critical Normal Range 12 to 51
ALT is an insime your liver puts out when there is significant damage going on. He said even with patients with hepatitis these levels do not normally get this high.
So if you all could just keep me in your thoughts. I do not go back to the Gastro. Dr. until next Thursday. He hopes at that point all of my blood work will be back and he will know something. Some of the test he has done could take a week or two but he is hoping that all of them will be back at that point. But on one good note I am feeling so much better and my jaundice seems like it has gone away.
Subscribe to:
Posts (Atom)