So i hauled myself into Montreal Thursday morning to see my regular liver specialist at the Royal Victoria Hospital. I like my doctor. When I get to see him 1:1, we work together to figure shit out. And he seems to have a good sense of when to ‘wait and see’ and when to take immediate action. This was one of those immediate action things. lol

So I had this camera capsule endoscopy thing last week. Looks throughout the intestines where the gastro- and colono-scopies can’t reach. It didn’t show anything unusual. I had more bleeding on Wednesday and an ‘episode’ on Tuesday … so something definitely up. Doctor could see that the drive in to see him had already taken a lot out of me, so he pulled a few strings and called in a favour to get me admitted to the short term stay unit so i could take some immediate tests. I love my Doctor. A trip to the ER would have done me in. Had a CT scan (yay, my weight is now safely under their arbitrary cutoff point), and also repeated the colonoscopy. Colonoscopy was clear (and quite uncomfortable I must say!). But FINALLY, they found the problem in the CT and it was just like my doctor had suspected after reviewing everything during my appointment.

Surprise surprise … a rare complication of my transjugular liver biopsy. I knew it. It went so poorly and the Doctor who did it was so inept. All my abdominal pain started then, now over a month and a half ago. The biopsy had caused a ‘fistula’ to form in my liver … that is, I was bleeding into my liver as a (kind of convoluted) result of the samples taken or some mistake in the procedure. Bleeding happens sporadically, empties into the hepatic veins and into the bile ducts .. eventually into the intestines. And voila blood in stool. There IS a pathway there, other doctors had given me conflicting answers on that.

There’s still some weirdness there that I can’t been able to fully grasp though. the fistula isn’t where the samples are normally taken via a TJ biopsy (near the top of liver, closer to portal vein opening). The fistula is actually near where the portal vein meets the hepatic vein … which in kinda toward the bottom and to the back side of the liver. I guess whatever is going on is causing constriction or pressure away from the sample site, causing the fistula. Kind of makes some sense, but makes me question if we are really fixing the problem … or just a symptom. I.e. if we stop the bleed, will it just start again somewhere else later? I’m going to try and figure that out a bit clearer, it’s so confusing! If I have time that is, it’s late Friday night and doc said I’d have the procedure to fix Monday or Tuesday. Hope he comes by again before then.

So the fix. Here’s where it’s scary and painfully ironic! In order to fix, they have to cauterize where it’s bleeding from (like in the movies where they apply a burning stick to a wound). But the path to that area is pretty long, tight, and convoluted … difficult to get to without some big surgery thing (which is not recommended at all). SO … they’ll likely have to just block off that whole vein. close it right up. Which means no more blood flow along that path, which normally carries about 1/3 of the blood flow to the liver. So in rough terms, that means that a lot (a 1/3-ish) of my liver is gonna die. LOL. Imagine. All these years of difficult treatment and personal hardship to protect the damned thing … it’s finally going well and we pop in to check on it … and BAM, gotta kill a third of it!!! I tell ya, I get all the weirdest hassles and problems. Good thing i still have some sense of humour.

So the scarier part … which part of my liver is going to die?? Well I see 4 sorta scenarios.
1) the current damage to my liver is spread around fairly evenly (homogeneous) and not too severe (no cirrhosis) … and I’ll end up with a bit less liver function, but probably not too noticeable.
2) Current damage is homogeneous again, but the actual damage to liver is greater than we think (i.e. i have a lot of cirrhosis) … then I’ll have noticeably less liver function and have a harder time with it all (energy, exhaustion, eating, etc).
3) Current damage is patchy (heterogeneous), with some regions good, others bad. Maybe we’ll just kill off the poorly functioning part. Fine with me! useless anyway. Just some short term upset while it wastes away.
4) Current damage is patchy again … but this time we’re cutting off the blood flow to the good healthy part. OOPS! This would not be good. Means that I’d quickly need a liver transplant. Would be a rush to find a donor, and I’d be miserable for a long while, before and after the surgery. Maybe I’d die.

Obviously #4 is worst case, and it doesn’t seem as likely to me. Kinda hoping for #3, but seems as though based on all indications thus far, #1 is most likely. I’ll take it.

So anyway, that’s it. Relieved to know what’s happening. Hopeful that it will all go well and I’ll be back on my feet in a week or 2. Staying here at the RVH (Royal Victoria Hospital) in the meantime. Scared to death of what’s going to happen during and after the procedure. There are other complications that could lead to me needing rapid liver transplant as well. More bleeding, accident during procedure, infection (Remember, I’m immuno-suppressed to the max with my meds.) Doctor says that for the people performing the procedure, it’s relatively common type of thing and they are good and well-trained for it. It’s another transjugular operation, and not major surgery - which is good. I’m not in a state where I would easily recover from cutting me open. Between the weight problem, infections, and having to cut through muscles that I already struggle with to get out of bed with my back problems and big belly … it’s just not a pleasant option. hence the TJ thing. Of course, it seems as though they might want me awake (but sedated) again. Makes it easier on them to do what they need to do and prevent injury. But things went so poorly with last biopsy, not looking forward to repeat it. But I’m making darned sure that it’s not the same guy doing the procedure! Hate that guy. lol

This entry was posted on Friday, March 28th, 2008 at 9:50 pm and is filed under Health/AIH, Personal. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.