In case anyone still reads this...
Hey everybody.
I have been kind of busy lately.
Been dealing with this whole mess about my liver which is stressing me out considerably. The effects of this disease are finally catching up with me. To give you an idea of how I am doing here it is...
I was trying to get in to see an endocrinologist and so I got my blood work done. It comes back the next day (my GP sent it out stat, usually it takes a week or so to get results from them) and I get a phone call. The say everything checked out fine except my hepatic panel (liver tests). My AST and ALT liver enzymes were "elevated" she said. I happen to have a frame of reference when it comes to those tests and asked her how "elevated" they were. 99 and 95 respectively. To give anyone interested a frame of reference, the top end of the normal range is around 35 for both of them. So I get off the phone with her and call my liver doctor whom I have not seen in 2 years and 4 months. I make an appointment, and went to see him last monday. Boy, did I ever get a talking to. He came in and said hello, and I introduced him to Ashley (who was awsome and came with me for the awful experience), and he asked when I had seen him last, I told him too long ago. He asked if I had been on my medicine or been seeing anyone else and I said no. I said I know I have screwed up and I was really stupid. He said that is ok it is a free country and you can commit suicide if you want to. He then asked if I had a life insurance policy and I said yes. He then proceeded to ask me who the beneficiary was, and I said my husband. He congratulated me on getting married but told me that I better tell him to start looking for him a new wife cause I am not going to be around long. It continued along this same line for a while. He then talked to Ashley for a minute, and told her that she is a beautiful young lady, and very smart. He then turned to me and said, "don't you think she is a very smart lady?" I told him yes, she is best friend I have. He then said "Well, if she is so smart, what does she see in you? Cause you are a very pretty young lady but something is wrong with your head I think".
Now I have to tell you I deserved every bit of that. I was in tears halfway through it, but I deserved it. The way I have treated my body the past 2+ years, I may as well have been signing my own death certificate. I have one of the best hepatologists in the world treating me and I have been ignoring every word he ever told me the past 2 years. I have the best doctor anyone could ask for and I have listened to nothing.
In addition to what all I wrote above, he told me again what my diagnosis is (which is different than I remembered it). I thought my primary disease was Non-Alcoholic Steato Hepatitis, but it isn't. It is the disease I thought they were just throwing around as a possibility. It is called Primary Billiary Cirrhosis. Dr. Gitlin told me that the NASH does contribute to it though. What sucks is that with PBC it doesn't get any better. With NASH, progression would slow when there is less fat surrounding the liver. But with PBC, I already have full-blown cirrhosis due to the bile ducts in my liver basically dissentigrating. Bile then seeps into the liver tissue and scars it, making it not function properly (if at all). The bile then gets picked up in the bloodstream and turns your skin yellow (the whites of your eyes, everything) and causes extreme and unstoppable itching. Bile in the blood causes confusion, fatigue, headaches, dizzyness. You name it and it probably happens.
I have tried to ignore all this and just keep pushing myself thinking, if I act like there isn't a problem and I keep going like I am fine, then there isn't a problem. So in case everyone thinks "well, how can she be sick, she doesn't act it?" I ignored what my body kept telling me it needed, rest or whatever. I think that now that I have aknowledged that I need to take care of this, the energy I have spent ingoring it all this time has worn me down and I need rest. I am finally just broken-down exhausted.
There is more for me to get out, but I have to finish this later.
I have been kind of busy lately.
Been dealing with this whole mess about my liver which is stressing me out considerably. The effects of this disease are finally catching up with me. To give you an idea of how I am doing here it is...
I was trying to get in to see an endocrinologist and so I got my blood work done. It comes back the next day (my GP sent it out stat, usually it takes a week or so to get results from them) and I get a phone call. The say everything checked out fine except my hepatic panel (liver tests). My AST and ALT liver enzymes were "elevated" she said. I happen to have a frame of reference when it comes to those tests and asked her how "elevated" they were. 99 and 95 respectively. To give anyone interested a frame of reference, the top end of the normal range is around 35 for both of them. So I get off the phone with her and call my liver doctor whom I have not seen in 2 years and 4 months. I make an appointment, and went to see him last monday. Boy, did I ever get a talking to. He came in and said hello, and I introduced him to Ashley (who was awsome and came with me for the awful experience), and he asked when I had seen him last, I told him too long ago. He asked if I had been on my medicine or been seeing anyone else and I said no. I said I know I have screwed up and I was really stupid. He said that is ok it is a free country and you can commit suicide if you want to. He then asked if I had a life insurance policy and I said yes. He then proceeded to ask me who the beneficiary was, and I said my husband. He congratulated me on getting married but told me that I better tell him to start looking for him a new wife cause I am not going to be around long. It continued along this same line for a while. He then talked to Ashley for a minute, and told her that she is a beautiful young lady, and very smart. He then turned to me and said, "don't you think she is a very smart lady?" I told him yes, she is best friend I have. He then said "Well, if she is so smart, what does she see in you? Cause you are a very pretty young lady but something is wrong with your head I think".
Now I have to tell you I deserved every bit of that. I was in tears halfway through it, but I deserved it. The way I have treated my body the past 2+ years, I may as well have been signing my own death certificate. I have one of the best hepatologists in the world treating me and I have been ignoring every word he ever told me the past 2 years. I have the best doctor anyone could ask for and I have listened to nothing.
In addition to what all I wrote above, he told me again what my diagnosis is (which is different than I remembered it). I thought my primary disease was Non-Alcoholic Steato Hepatitis, but it isn't. It is the disease I thought they were just throwing around as a possibility. It is called Primary Billiary Cirrhosis. Dr. Gitlin told me that the NASH does contribute to it though. What sucks is that with PBC it doesn't get any better. With NASH, progression would slow when there is less fat surrounding the liver. But with PBC, I already have full-blown cirrhosis due to the bile ducts in my liver basically dissentigrating. Bile then seeps into the liver tissue and scars it, making it not function properly (if at all). The bile then gets picked up in the bloodstream and turns your skin yellow (the whites of your eyes, everything) and causes extreme and unstoppable itching. Bile in the blood causes confusion, fatigue, headaches, dizzyness. You name it and it probably happens.
I have tried to ignore all this and just keep pushing myself thinking, if I act like there isn't a problem and I keep going like I am fine, then there isn't a problem. So in case everyone thinks "well, how can she be sick, she doesn't act it?" I ignored what my body kept telling me it needed, rest or whatever. I think that now that I have aknowledged that I need to take care of this, the energy I have spent ingoring it all this time has worn me down and I need rest. I am finally just broken-down exhausted.
There is more for me to get out, but I have to finish this later.