Same old, same old today.
Dr. Weiss ( my biggest fan and specialist since day 1), says my eye whites are looking good-meaning not very yellow, considering my bilirubin levels are in the 90's. (Bilirubin is the brownish yellow substance found in bile. It's produced when the liver breaks down old red blood cells and then is excreted through stool.)
However, in my case, my liver is quite damaged and does not perform these normal duties as it should so it tends to circulate and remain in my body. When bilirubin levels are high, like in my case, my skin and whites of the eyes will appear yellow. If they persist to go higher, I will develop jaundice.
He says I'm looking well, considering!
He's ordered a Gastroscopy for Jan. 2011 sometime. This procedure is like many I've had before. A camera will be inserted through a long tube down my esophagus to my stomach to see if any of the varices( tiny veins) have become inflated. If they are, I will need a procedure called Banding. This is where they band off any veins that could rupture and cause internal bleeding.
I had this exact procedure when I was 3mths pregnant with Gage- as the pressure from an ever growing fetus in a woman with my condition could potentially cause tiny veins to rupture. Luckily gor Gage and I, this did not happen!
This past week has been a very draining one. I have felt nauseous, light headed, and physically exhausted. It doesn't help that there is a rambunctious, whiny, stubborn yet sweet 3 yr. old at my ankles 24/7...lol...
But how can I blame him, it's not his fault mommy is tired and needs her butt physically glued to the couch!
I pray for the days when I don't feel like this......
Monday, September 27, 2010
Sunday, September 26, 2010
Hey everyone,
As you all know, I have an auto immune disease that affects my liver called Primary Sclerosing Cholangitis. Below, reads a bit of what it all entails and will hopefully answer any questions in your mind that some or all of you may have asked yourselves at some point! It has been a challenging task to try and keep everyone on the knowing end of it all and I apologize if any of you have ever felt left out ...it was most definately not my intention. So here is my attempt at keeping everyone in the loop. Thanks for being patient as I should have started this blog many moons ago:)
PSC which stands for Primary Sclerosing Cholangitis, is a chronic, progressive disease that damages and blocks bile ducts inside and outside the liver. Bile is a liquid made in the liver. Bile ducts are tubes that carry bile out of the liver to the gallbladder and small intestine. In the intestine, bile helps break down fat in food.
There is inflammation of the bile ducts that leads to scarring and narrowing of the ducts over time. As scarring increases, the ducts become blocked. As a result, bile builds up in the liver and damages liver cells. Eventually, scar tissue will spread throughout the liver, causing cirrhosis and liver failure. In a nut shell...this is what is happening to my liver and then some....
PSC is linked to inflammatory bowel disease (IBD). About three out of four people with PSC have a type of IBD called ulcerative colitis. I am one of these lucky people! I also have 2 small gallstones and therefore endure gallbladder attacks on occasion. Not fun stuff let me tell ya! But all par for the course.
The cause of PSC is unknown and so far there is no cure. There are meds I can take to relieve symptoms and manage complications such as pruritis(itchy skin), and antibiotics to help treat various infections, and vitamin supplements. My body simply depletes all traces of Vitamins A, D, E, and K. Also, I get my fair share of regular MRI's, ERCP's, and CT Scans when needed. With having Ulcerative Colitis, the risks of getting colon cancer are doubled and so I get to look forward to enduring annual Colonoscopy's!!! My favourite..ha...not!!! Sorry, that last sentence may have been more than you wanted to know..lol..
They say my liver's time is almost up now as it has been a long 9 year rollercoaster ride. Nobody can predict when that day will come exactly, and that's what's so hard about this whole thing, really. Statistics say the average life of a liver for someone who has this disease is 10 years. I feel though, that I could get 15? Huh, I don't know....more wishful thinking I guess! On days I feel well it's 15, on days I don't feel well, it's more like 10. I know it's coming and it's out of my control.......
The only definitive treatment is a liver transplantation. And thus begins my journey......
As you all know, I have an auto immune disease that affects my liver called Primary Sclerosing Cholangitis. Below, reads a bit of what it all entails and will hopefully answer any questions in your mind that some or all of you may have asked yourselves at some point! It has been a challenging task to try and keep everyone on the knowing end of it all and I apologize if any of you have ever felt left out ...it was most definately not my intention. So here is my attempt at keeping everyone in the loop. Thanks for being patient as I should have started this blog many moons ago:)
PSC which stands for Primary Sclerosing Cholangitis, is a chronic, progressive disease that damages and blocks bile ducts inside and outside the liver. Bile is a liquid made in the liver. Bile ducts are tubes that carry bile out of the liver to the gallbladder and small intestine. In the intestine, bile helps break down fat in food.
There is inflammation of the bile ducts that leads to scarring and narrowing of the ducts over time. As scarring increases, the ducts become blocked. As a result, bile builds up in the liver and damages liver cells. Eventually, scar tissue will spread throughout the liver, causing cirrhosis and liver failure. In a nut shell...this is what is happening to my liver and then some....
PSC is linked to inflammatory bowel disease (IBD). About three out of four people with PSC have a type of IBD called ulcerative colitis. I am one of these lucky people! I also have 2 small gallstones and therefore endure gallbladder attacks on occasion. Not fun stuff let me tell ya! But all par for the course.
The cause of PSC is unknown and so far there is no cure. There are meds I can take to relieve symptoms and manage complications such as pruritis(itchy skin), and antibiotics to help treat various infections, and vitamin supplements. My body simply depletes all traces of Vitamins A, D, E, and K. Also, I get my fair share of regular MRI's, ERCP's, and CT Scans when needed. With having Ulcerative Colitis, the risks of getting colon cancer are doubled and so I get to look forward to enduring annual Colonoscopy's!!! My favourite..ha...not!!! Sorry, that last sentence may have been more than you wanted to know..lol..
They say my liver's time is almost up now as it has been a long 9 year rollercoaster ride. Nobody can predict when that day will come exactly, and that's what's so hard about this whole thing, really. Statistics say the average life of a liver for someone who has this disease is 10 years. I feel though, that I could get 15? Huh, I don't know....more wishful thinking I guess! On days I feel well it's 15, on days I don't feel well, it's more like 10. I know it's coming and it's out of my control.......
The only definitive treatment is a liver transplantation. And thus begins my journey......
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