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Update from Barb

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It's only 10:30 and Ken is already napping. He had a rough night.

Several people have asked why can't they go in and remove the clot or dissolve it. I had this long medical explanation all written out.....blah,blah, yada, yada and boring to boot. So instead, I'll adapt TimR's (a PSC Guru from our group, who can explain anything in terms the rest of us can understand. By the way, Tim just received his 3nd liver and was back on-line helping the group in a week!) Here goes, I hope I do Tim justice.

Picture a just planted (in full sun) very young tree, less than 2 inches in diameter and it's 110 outside. The tree is pretty, the leaves have that young lime green color. Then some 'jerk' comes along with a chain saw and cuts the tree down. What happens next?

1. The trunk of the tree can't soak up all the water & fertilizer you poured around the base of the tree. The leaves try to live on their own, but in this heat, they can't last very long, so eventually they start to turn brown, curl up and slowly die.

2. Once the leaves die, the tiny branches that held them begin to die too.

3. Now, so much damage has been done, the larger branches die, leaving only the trunk alive.

4. You panic and call Leah (Ken's cousin), who recommends a great tree doctor. He shakes his head, feels terrible about your loss, but he's totally helpless, there's nothing that can be done. He can't glue, paste, staple, or super-glue the trunk pieces back together. Even if he could, it's too late. The leaves, tiny branches, larger branches and trunk have already died.

This is what is happening to Ken's liver. The 'jerk' is the blood clot, the capillaries are the leaves, the vessels are branches, and the trunk is Ken's portal vein. The only difference between the tree and the liver is that the liver can and does rejuvenate itself, but it can only do that just so many times before it quits trying and cirrhosis sets in. Once cirrhosis happens, it's only a matter of time before liver failure.

Ken hasn't been re-listed, because no one knows how long his liver will last. The doc did say, because Ken is so far out from transplant, when he is re-listed, he'll start at the bottom of 'The List' all over again. And we'll be back to using the MELD score. Of course, if Ken should go into liver failure, he'll be listed at a much higher score again.

I know this is a long update, but I couldn't come up with another way to explain what is happening and why the doctor's can't take care of the clot. (For family & friends - TimR's tree, explains PSC to our new members. The tree is the liver and branches & leaves are the inflamed bile ducts.)

Hope this helps,

With love, Barb

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Here is the Web site:

www.caringbridge.org/visit/ken

You then need to register and you'll be notified via e-mail when there is a

new update. The last update was from last Saturday, Aug. 18th.

-Marie

_________________________________________________________________

More photos, more messages, more storage—get 2GB with Windows Live Hotmail.

http://imagine-windowslive.com/hotmail/?locale=en-us & ocid=TXT_TAGHM_migration_HM\

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