In My Shoes: I have been thinking....

Friday, February 1, 2008

I have been thinking....

Lately I have been thinking about my last hostpitaliation this week and some of the doctors comments. First off you may have all ready been informed that I went in last weekend because of chest pains and they had me stay (eveen though I really didn't want to) because my heart rate was so high it was at 140 and wouldn't go down the lowest that it would get to was 133. But the doctors ran one test that had to be done to check my heart and that came beck fine and my wonder is that I know that I have to do all these tests for UCLA so that they can't use my heart as a defense to all my problems but it just how can I explain....it urgs me that all these tests come back fine and which is good but I know that my liver is most likely the cause of all my problems and that hey, maybe a transplant would help solve some of this crap and issues that I'm having it's just that UCLA always seems to want to blame problems and symptoms on everything else BUT the liver and I'm just so sick of being poked on constantly just because UCLA is so picky. I know it seems like I'm always bad mouthing UCLA and I know they do great things for alot of liver people, it's just that why is that either I'm too sick to have a transplant or I'm too healthy I don't get that it's like no matter what the sistuation for me it's always a no. And, why is thta I have to fight so hard just to even have a life? I simply can't go on forever like this and I think now more than ever I've begun to realize that and....um....it's just frustrating going into UCLA knowing that you already have the answer but it seems what gets me the most is thtat last time they gave me hope....hope that this battle could end that I wouldn't have to struggle so hard to ...I guess the word I would use is accepted....and then that hope was taken away. And let me tell you there are nights, especially when I know that I will have to go through that proccess again, there are nights were I do cry my asleep because I don't like that fact that the hope for a tranplant is such a big battle. Like I said to my mom too because I'm starting to get big spider vains on my body and I know that if I were to go to UCLA on that factor....well I could tell you what they would say not excatly but pretty darn close and that would be, so what just because I have thoes and my blood tests aren't um to the floor like zero what would make me so different than other liver patients. But one thing that I ALWAYS and I mean that, on thing that they always say is we want you to be to the point of life and death before even getting on the list and I'm sorry no one NO ONE should have to get to that point before even being considered because that to me it too late. I'm sick and tired or this and this is what I hate the most about this disease is it's such a battle and it's a battle that I didn't ask for (and same goes for other kids and people out there with liver disease) and at times you just have to realize that you just got to live with it and keep your chin up, and at other times it's like why me? Well another thing that the doctors wanted to do while I was in ER was a bone marrow transplant just because my plateletts are low and .....uhhhh.... HELLL NOOO!.... I'm sorry but they have always been low and actually when I was there they were high for me but doctors just seem to freak out all the time over that another thing I said to that though was that I've seen house and I'm sorry that crap looks hella painful. Another thing that was brought up was a spleenectamy (sorry if my spelling's bad) and I have issues with that because I've been told by the guy that did all my liver surgries that a spleenectamy would cause immediate liver failure and the only way I would ever do it is 1. they can ganrantee 100% that my liver wouldn't automatically fail and 2. if i had a transplant and that's my comment end of subject and I won't change my mind on that because I'm soory jsut because THEY want to do something doesn't mean that it's always safe or the right thing to do. Isn't life fun?(sarcastic) Oh, and don't be afraid to comment people.
~Fiona

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Biliary Atresia

Biliary atresia is a condition in which the ducts that carry bile from the liver to the gallbladder and small intestine are not normal. These ducts can be injured, blocked, or missing. When the ducts that carry bile out of the liver are closed, bile backs up and damages liver tissue. In time the liver can develop scarring or cirrhosis. The gallbladder may also be abnormal or missing. The cause of Biliary Atresia is unknown. It occurs in one infant in every 15,000 live births. It is a serious disease which requires immediate surgical and medical treatment.

Arteriovenous Malformations AVMS

I have been diagnosed with AVMS in my lungs do to my liver disease. These have caused me to have 2 lung bleeds which were very scary. I still have more AVMS and they are causing me breathing problems. Below is an explanation of what the AVMs are and a picture of what is happening in my lungs.

Arteries and veins are part of the human cardiovascular system. Normally, the arteries in the vascular system carry oxygen-rich blood at a relatively high pressure. Structurally, arteries divide and sub-divide repeatedly, eventually forming a sponge-like capillary bed. Blood moves through the capillaries, giving up oxygen and taking up waste products from the surrounding cells. Capillaries successively join together, one upon the other, to form the veins that carry blood away at a relatively low pressure. The heart acts to pump blood from the low pressure veins to the high pressure arteries.
If the capillary bed is thought of as a sponge, then an AVM is the rough equivalent of jamming a tangle of flexible soda straws from artery to vein through that sponge. On arteriogram films AVM formation often resemble a tangle of spaghetti noodles. This tangle of blood vessels forms a relatively direct connection between high pressure arteries and low pressure veins.
The result is a collection of blood vessels with abnormal connections and no capillaries. This collection, often called a nidus, can be extremely fragile and prone to bleeding.