PBC Bleed 7. The Vesuvius Within Me. Crashing in the Same Car.

Good thing I finally got around this month to describing November’s bleeds 5 and 6 in this continuing realtime account of me and my PBC (primary biliary cirrhosis) because now it’s already time to move along to bleed 7.

This was a rather dramatic one, occurring in the wee hours of January 18, 2013. My hemoglobin [hgb] dropped to a personal worst of 6.1, I landed in the ICU and then on the cardiology floor, and required 3 transfusions. A couple of days ago my hgb was 10.5, mildly anemic, but I feel great.

Why the ICU and cardio unit? Because when your hemoglobin drops that low (normal for post-menopausal women = 11.7 to  13.8), it means none of your organs — including your heart — are getting enough oxygen.

What went right this time was that the Asheville ER got a gastroenterologist in to perform an endoscopy immediately, while I was still actively bleeding. Except for my first bleed, in Huntsville the doctors waited 20 hours or more to ‘scope, after drugs and IV fluids had stopped the bleeding.

You can’t be sure of the source of the bleed if you don’t see the bleed.

The Asheville GI theorized what I had this time around was a Cameron’s Erosion. This is erosion in the stomach near the diaphragmatic haitus which is a hole where the esophagus passes into the stomach. The junction should be below the diaphragm, but if you have a hiatal hernia, as I do, then it is above the diaphragm. Usually, hiatal hernias cause no bother other than indigestion. But I have other things going on as a result of the PBC, namely protal hypertension and gastric and esophageal varices. (If you search “cameron’s erosions” + “portal hypertension” + pbc, Google comes up with 75 results, which in the Googleverse is close to zero.)

Now as it happened, I had an endoscopy and visit planned with my hepatologist, Dr. Brendan McGuire, at University of Alabama-Birmingham’s Liver Center for January 22 and 23. So immediately after leaving the hospital on the 21st, we headed south.

Dr. McGuire scoped me Tuesday morning and reported he agreed with the Asheville doctors. He described the area as not unlike a scrape on a kid’s knee that scabs over, but before it gets a chance to heal completely, keeps getting banged up. He didn’t see the site of my first bleed until a few weeks had passed but thinks this one was in its vicinity if not the same place.

So it could be like I keep crashing in the same car, having the same bleed over and again. Since I wasn’t scoped during bleeds 2 through 6, we’ll never know.

Why not fix the hiatal hernia? Too risky: its position, the sites of the erosion and varices, the amount of scar tissue, the thinness of the veins — lots of reasons.

What can be done: double the dose of beta blockers I’m taking to slow heartbeat and of antacids to reduce stomach erosion. And hope that the Vesuvius within me remains dormant.

And what about my primary biliary cirrhosis? I’m doing just fine there, holding fairly stable. It could be years and years before it is bad enough to warrant a transplant. There is something called a MELD score. Normal people’s is zero. Those near dead of liver failure have a score of 40. I’m at 8. Bleeds don’t factor in.

So all I have to do is hope I don’t erupt.

But what we need now is a little relief from the dreariness of reading about me going on about vomiting blood.

I suggest a segue to youtube to view some loveliness: David Bowie singing “Always Crashing in the Same Car.”

You can choose between this one with a particularly happy Bowie, or the GQ Awards show where Bowie wore sandals with socks, or this with a sassy Bowie around 3:18. Or all and more (like here, where he isn’t playing the guitar and seems not to know what to do with his arms).


PS: Although it doesn’t have much about PBC, this site has a cool diagram of possible diagnoses related to liver trouble.

7 thoughts on “PBC Bleed 7. The Vesuvius Within Me. Crashing in the Same Car.”

  1. God how frustrating this must all be for you, having these drastic eruptions yet your PBC is as stable as can be. I’m a lil bit in the same boat, Stage 4 PBC, cirrhosis, p hypertension, varices growing steadily but none banded or burst yet (got my next scope on Dec 5/13). I love your press on attitude. I live life the same. Travel a lot and embrace life big time.
    I hope you’re doing well and no more bleeds!!!

  2. If not for the fact that you had to suffer through all of this, I find it all so fascinating! Take that as a compliment to your writing skill and unrelenting ability to find some perspective-if not actual humor-in your very serious predicament. Hope this post finds you and your family well. Glad to hear (via FB)you got to the grocery store and got some laundry done after this scary health event. truly amazing!
    Best to you, Joan Bartos

  3. I know what you mean about the flu season and even though I had the shot this fall I ended up having a bad chest cold — the hacking cough may have caused the hernia to rub against the eroded area causing bleed 7. I used to enjoy working with kids, but I fear their germs. In a way I consider the blog sort of a volunteer activity that is safe. I don’t have a MedAlert but my husband is retired and I am rarely alone; I do keep a phone close by (a cell in my pocket). One thing I found useful was to make a list of my doctors, a short description of PBC, emergency contacts, my meds etc. I keep one in my purse and several around the house. It makes it easier during a bleed to hand one of these to the EMTs or tell them to look on the fridge and to bring to the ER since I always have to, it seems, explain what is happening, Best of luck. We need it!

  4. Currently waiting a living donor. I know how you feel about some of this, having experienced for myself the varices, ascites, portal hypertension, fatigue. Never knowing if or when I will need to go back to the ER for bleeds, fevers, etc. Hence I stay close to my hospital and have people on alert for emergency calls from me. During this rampant flu season, I’ve mostly stayed at home. I’m thinking of getting one of those emergency pendants which calls family and friends or 911 if I need help. Do you have one of those? My mom had one and used it successfully.
    Hang in there!
    Thanks for your willingness to blog about PBC. It eases the isolation.

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