Primary Biliary Cirrhosis, Portal Hypertension, My Perfect Endoscopy Results and My Fourth Bleed

This post updates my last one, Primary Biliary Cirrhosis, Portal Hypertension, and the Frustration of Knowing There’s No Way of Knowing What I Need to Know, in which I discussed what a relief it was going to be to have an exploratory endoscopy in which either I would discover that I had no varices on the verge of bursting and causing a life-threatening bleed, or if I did have varices, they would be banded and so I would not be at risk — for the time being — of a bleed.

Well, here’s what happened. (Fair warning: This blog isn’t for the weak-stomached today.)

Tuesday morning: endoscopy. Great news! No varices! The GI suggested that maybe I could go a year before the next scope.

Wednesday: Normal life, until evening, when it was a struggle to stay focused enough to watch the debates.

Thursday: I felt really poorly, headache, no energy, unable to focus or think or read, light-headedness. I thought, Gee, it’s a good thing I had the endoscopy Tuesday or else I’d be sure I was starting a bleed.

Friday, 1 am: Urgent need to use the toilet. Expelled globs of old digested black blood, then started throwing up black blood. Simultaneously. Really disgusting. Yelled for help, husband came, call into 911, off I go in the ambulance.

Now, this bleed wasn’t as bad as bleeds one, two, and three because my blood pressure never dropped low enough so that I lost consciousness. I was even able to talk the EMT out of starting an IV in my rolling, uncooperative veins en route to the hospital along winding and bumpy roads.

So what happened? How did I manage to go from A+ to F in the esophageal health department?

Next day the founder and boss of the GI practice did a much slower endoscopy. He found a tear in the esophagus and repaired it with two clips.  He wants to call it a Mallory-Weiss tear, which can follow extreme retching. But the only retching I did was sudden and swift vomiting of blood. In fact, no retching was involved. More like spouting.

He can call it what he wants. There’s no way of ever knowing what caused this tear. But the hospitalist, the nurses, anyone without a vested interest in it being a Mallory-Weiss, is likely to agree with me: I got nicked during the Tuesday morning endoscopy.

It happens. I’m not irate. I know that endoscopy is an invasive procedure and that there are risks. According to the Mayo Clinic, tears happen in “an estimated 3 to 5 of every 10,000 diagnostic upper endoscopies.” It is a good thing that I was conscious, coherent, and creditable, and returned to the same hospital where the exploratory endoscopy had been done. Without a history to work up a diagnosis, this could have been as bad as a burst varices bleed. The mortality rate is 20% when the esophagus is already compromised and because

the diversity of clinical symptoms and signs combined with a lack of individual experience [among doctors] regarding this particular condition may impede rapid identification of this potentially hazardous situation. Accordingly, delayed diagnostic work-up may hinder timely and appropriate treatment with a negative effect on patient outcome.

Well, that’s not real encouraging, is it?

So now what? What do I do in six months’ time?

It is, you see, a classic damned if you do and damned if you don’t, between a rock and a hard place, etc. situation: in trying to eliminate the risk of a burst varices bleed by exploratory endoscopy, I incur the risk of a bleed from the endoscopy itself.

Well, I’ll tell you. I’ll have the scope. But I’ll either have it with the hepatologist at UAB even though that means a five or six hour trip, or maybe I would have it here — but only if the bossman himself does it.

Someone who can do the math can combine these odds, just for fun. Incidence of having PBC in the first place: 2.7/100,00. Incidence of tears in upper endoscopies: 3-5/10,000. Incidence of having PBC and having  a tear following an endoscopy = ???

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4 thoughts on “Primary Biliary Cirrhosis, Portal Hypertension, My Perfect Endoscopy Results and My Fourth Bleed

  1. Cirrhosis is a term that identifies an group of chronic conditions of the liver in which normal liver cells are destroyed and replaced by scar tissue, minimizing the amount of normal liver tissue. When scar tissue grows in the liver, the quantity of normal liver tissue decreases and the liver struggles to function normally.

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