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......

5 comments:

  1. Thank you for posting your Blog, Robin. It's a great way to keep everyone informed. We pray for you and Darren & Gage every day. We don't know what's going to happen, but we need to take it one day at a time, as I'm sure you've learned to do! Love you!

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  2. Great blog Robin and what a great idea. Hopefully this blog will not only be helpful for us but be therapeutic for you as well. Love you! XOCO.

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  3. Thank you Robin, for sharing so much of yourself. It can't be easy, but stay positive and know that we are here for you and we love you very, very much. Jocelyne

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  4. Thanks you guys!

    I really appreciate your thoughtful feedback!
    It only pushes me be stronger and fight harder!

    Love Robin

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  5. So apparently my previous attempts at posting failed. Can't say I recall what witty and inspiring thing I attempted to say, so I'll stick with the old stand-by...

    Be strong and remember that so long as the number isn't ZERO, there's nothing that says that the amazing story can't be yours

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