Third Time Around: PBC, Portal Hypertension, and a Routine Bleed

This one’s for that small audience of folks with primary biliary cirrhosis or other conditions that lead to portal hypertension, which can lead to burst varices usually in the esophagus or stomach, which result in a disgusting and alarming expulsion of fresh red or older black blobs of blood. I’ve received comments from people with PBC that they have looked for information on what these bleeds are really like. I’ve been chronicling my experience with PBC for a couple of years now, so here’s an update on this emerging story.

It happened to me again Sunday. This one wasn’t too bad — just two transfusions and two days in the hospital.

 

At Least No Hospitalist Was Involved

After my second bleed,  when two days were wasted before I was transfused because the hospitalist couldn’t tell the difference between someone having a seizure and someone going into shock and ordered a CAT then EEG, paying no heed to the upchucked blood, I got a local GI. I still rely on the skill and wisdom of my hepatologist, but we agreed that since he is 100 miles away, I needed someone local.

So that was an improvement — at last, a doctor who didn’t need  convincing I had bleeding varices. He transfused first and waited until Monday to do an endoscopy. He expected to find a lot of active varices, but he didn’t.

Capsule Endoscopy

In the recovery room I was badgered out of my anesthetized oblivion by cries of “wake up, wake up: You have to swallow this camera.” So I dutifully downed the capsule and it floated around my stomach and small intestines for 8 hours transmitting some 60,000 images to a black box strapped on my waist.

How cool is that? I feel like my guts are a celestial abyss or the center of the earth or some such that a little robotic explorer has now photographed every crevice of. I suppose it must have some GPS system too tagging where in my body this particular vein may be found. I guess another very bored robot scans through the 60,000 shots before pulling the interesting ones for a set of human eyes.

To tell the truth, I hope there are no interesting ones. I imagine that a bleeder in the upper small intestines would be a hard one to fix. [Will not Google. Do not want to know if I don’t need to know.]

I Just Knew It

What was different this time around is that I was fairly sure I was bleeding before I had any evidence that I was. Saturday afternoon I was really, really, really tired — like eyes won’t focus too tired to eat tired.  Sunday morning I awoke early and although still tired decided that I shouldn’t be, I had had hours of decent sleep, and best to get on with things.  I had breakfast and sorted through a few piles, and then rather suddenly felt sweaty, cold, and clammy — that pre-faint sensation. So I sat down and finished up what I was doing, went back to bed, and told my husband to be prepared, that I was probably bleeding internally.

By the time he was dressed, I had thrown up about a 1000 ccs (I later heard the EMT say) of black blobs and knew it was too late for him to drive me because I wouldn’t be able to make it to the car. We have an inconveniently situated entrance for stretchers — just never thought about that when house-hunting. The EMTs were hopeful that with help I could walk to the front path and stretcher. I woke up in the ambulance.

So now I’m wondering, should I have gone to the ER earlier? But I don’t see that going over too well, do you? Someone without a mark on her saying, I have no proof but I’m sure I’m bleeding internally — I’d end up with a psych consult and a hospitalist.

What’s frustrating — other than the whole damn thing, that is — is that this Monday I was scheduled for a routine preventative maintenance endoscopy with my hepatologist. I had been on an annual regimen, but he decided in October to do one after six months instead. Came close to avoiding this bleed, but not close enough. The second bleed was a year and two weeks after the first; the third, six months and two weeks after the second. I don’t like this pattern.

But I have medical insurance and endoscopies don’t hurt. Throwing up blood is always going to be gross, disgusting, and alarming, but I have to say that this time the whole process seemed so routine. Proves you can get used to anything, I suppose.

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5 thoughts on “Third Time Around: PBC, Portal Hypertension, and a Routine Bleed

  1. my husband has just suffered the same as this. They found the bleed on the 4th endo and fixed it a week ago. We’re hoping to have him home soon but I’m finding it hard to find any info on the diet he should be on after (he’s been nil by mouth til today when they gave him jelly).
    Any info you could pass on to me would be much appreciated.
    Hope you are well now 🙂

  2. Thanks, Redeye, if it’s not one thing, it’s another. But I shall lift myself up, brush myself off, and live to fight another day.

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