Yes, it has been months since I last posted, and, yes, my next-to-last post was on this same topic (Primary Biliary Cirrhosis [PBC], Portal Hypertension, My Perfect Endoscopy Results and My Fourth Bleed) in my continuing series of what my experience with PBC is like. I’m beginning to understand why there aren’t so many real-time chronicles of progressively worsening illnesses.
You may recall that back in early October 2012, I had a routine exploratory endoscopy with perfect results, followed a few days later by a bleed I was told was from a tear in the esophagus which was patched up, and no other problems noted.
November 6 I drove from Asheville, NC back to Huntsville, AL to spend the 8th with my son on his 23rd birthday. Before dawn on the 8th I started throwing up and defecating black blood. I really, really did not want to go to the hospital. I didn’t want to ruin my son’s birthday. I had so looked forward to this. But even less did I want him to discover me bled out, so I told him, and he insisted I go to the hospital. We ended up visiting in a room of the same hospital where we were 23 years previously, to the day.
Next day, the 9th, another endoscopy. And behold, the GI discovers two varices needing banding. He also reports that he saw no evidence of the tear I was told was the cause of my October 5 bleed, with repeated emphasis on the word tear. Huntsville GI added he wasn’t impressed with the Asheville GI’s work and that I had a good deal of scar tissue. Because my hemoglobin creeps up to 9 (12 is normal lower limit), I’m not transfused and am released that day.
Bleed 5.5 or 6.
Between November 8 and November 20, I felt worse and worse, like I was practicing being dead. I didn’t read or write or sleep, just stared out the window.
I was with my daughter at her doctor’s on the 20th when I started throwing up blood. Again. This time was a bit different; t some red mixed in there with the black, not quite as much as in past bleeds, but enough so I am on the verge of losing consciousness.
It was two days before Thanksgiving, and I had really, really been looking forward to spending it with my family and new friends.
The GI on call from the practice I visited to schedule October’s exploratory endoscopy paid me a visit in the ER. This made the sixth I’d seen from that practice. I never will believe that I had a spontaneous tear after the exploratory and not a nick, but GI #6 is simply preposterous. He claims that with PBC patients, low hemoglobin, as low as 8, is preferable to the normal 12-14 because less blood means less likelihood of portal hypertension. How stupid does this man think I am? He’s the doctor and I am not so I refrained from telling him his job or the role of oxygenated blood in maintaining life. But man, why don’t we just take a few pints of your blood, drop you to 8, and then let’s discuss quality of life.
Fortunately, a new GI did the next day’s endoscopy. She reported that I didn’t have varices that bled. Instead, the bleeding was caused by ulcerations around the two bands placed by the Huntsville GI (who was, you’ll recall, unimpressed by the Asheville group’s work).
So was this Bleed 5.5 or Bleed 6? It wasn’t a varices bleed. But then again, neither was Bleed 4 (the nick bleed).
There was a good thing about Bleed 5.5 or 6. It got me some blood. My hemoglobin had dipped to 6.7, an all-time personal worst for me.
I thought after the doctor visited Thanksgiving morning that I would be able to go home when the second transfusion ended. But a nurse said it would take 12 hours to wean me off the IV which was delivering a drug to help stop internal bleeding.
Despair. In comes Thanksgiving Day hospital turkey.
However, when the hospitalist came around, she said since this was not a varices bleed, I didn’t need to be on that drug, and so didn’t need to be weaned from it. I could leave.
No one can give me an answer beyond bad luck for how in hell two varices burst on November 8 when on October 2 and 5, there were no signs of developing varices.
I’m going to Birmingham to see my hepatologist at UAB in 10 days. It is worth it to me to drive 6 hours for an exploratory endoscopy with someone I trust.
Thanksgiving 2012. My left arm. The other looked about the same.