Tag: gastric bleed

Bleed 11, An Exploratory Endoscopy, Bleed 12, Injectafer Again

My trials with gastrointestinal bleeds continue. Simply go straight up and click Primary Biliary Cirrhosis or Portal Hypertension Bleeds if you are a late arrival to this wearisome party. At this point I think I keep chronicling them so I can remember myself, have I had 11 bleeds or 12? How many transfusions so far?

The Halloween Bleed 2014

I was trundling down the tracks uneventfully — how lovely an uneventful life can sometimes be — when I derailed on October 28, 2014. I started with melena, and so my husband drove me to the ER; I knew from the metallic taste in my mouth the upper GI bit would begin soon.

As one friend said, some people will do anything to  win the Halloween costume contest.
As one friend said, some people will do anything to win the Halloween costume contest.

Now every bleed has its moments, and this was during the Ebola scare. I thought I could perform a useful service to the Ebola response team every US hospital was throwing together last fall, so I told the triage nurse that within minutes, probably no more than an hour, I would be throwing up blood. She stopped me. Had I been to Africa or been around anyone who had? No and no. However, I continued, since I posed no infectious risk, I was the ideal test: get a team suited up, handle me as though my emesis had an unknown cause, and see how well they did with avoiding getting any bloody vomit on exposed skin. She scurried away and passed me to a different waiting room for labs.

The tech just about had time to get the needle in when up came the red blood, a good bowl full (I had brought my own bowl). We were crammed in a tiny room where another nurse was charting. The two looked horrified. I said, I told triage this would happen.

On a scale of 1 to 5, with 5 being worst yet (the first, early August 2010), this bleed ranked about a 2, and only because it was both a melena and emesis event. I didn’t need transfusing. The Injectafer iron infusions I had had back in April stood me well.

But then I made a mistake. After each upper GI bleed, the GI on call for the practice that has a monopoly in this town does an endoscopy to ostensibly find the source of the bleed. Since these scopes occur on average 18 – 22 hours after the bleed, and since in the meantime I have received bags of IV octreotide that stop GI bleeding, these are really Cover Their Asses exercises so they don’t discharge me with an active bleed. They have never once found the source of the bleed. Once you stop a bleed in the GI tract and it has had time to clot, chances of finding it are too small to bother with.

Back to the mistake, and the second memorable moment. The GI visited my room and said, while he didn’t think he had found the source of this bleed, he did find some oddity. “I stared at it for a long time.” This was what he had to say about the oddity he decided to call an ulcer and to put a clip on (another scar!) even though he said it was in an odd place, wasn’t bleeding, and wasn’t the color or shape expected. But to answer my questions he repeated, “as I said, I stared at it for a long time.” (How very reassuring!) He wanted to stare at it again in 3 months.

And like a fool, like an idiot, I foolishly, idiotically agreed to return February 3, 2015, so he could stare at it again.

February 3, 2015: The Exploratory Scope

So in I go as an outpatient, in fine fettle. Hg on January 21 of 13.1. Very respectable.

And the mysterious it? Vanished. The doc found the usual Cameron’s Erosions. I had a look at the pictures from his scope, and said, well, guess I’ll be back here soon. He said, on the contrary, all looked fine, no banding needed.

February 12, 2015. Bleed the Twelfth.

Nine days after the unremarkable exploratory I was in the ER again. This was a major bleed. On my new, devising as I go along, scale of 1-5, I’d say maybe a 4.0 to 4.5 based on projectile emesis and brief loss of consciousness. I still haven’t seen the stair stretcher or whatever it is the EMTs use (when I’ve needed it, I’ve been too far gone to see it).

My biggest fans will know two things seem familiar here. One is the date. A year ago, Feb. 12, 2014, I had had a bleed on the first anniversary of my collie’s death. Now it was the second anniversary. Rascal bled out, by the way. Undiagnosed tumors burst on his spleen. Well, that is just coincidental gothic bad luck.

But I’m not so sure about the other coincidence. The last time I had an exploratory scope in this city, I had a bleed about 64 hours later. 

That’s it. All done. I will have exploratories at University of Alabama-Birmingham (med school) Kirklin Clinic, but not here.

And I may refuse any post-bleed scopes here as well. But that is a story not yet completed. For now let’s leave it at this: February 3, 2015, as an outpatient in good heath I had Managed Anesthesia Care (meaning a nurse anesthetist is present throughout the procedure). On February 13, 2015, as an in-patient who had lost an estimated 3 – 4 units of blood less than 24 hours previously, I did not.

Back to the Injectafer Infusions

I left the hospital after Bleed 12 with a hg of 9.1. I had not been transfused. Two weeks later my hg had dropped to 8.7, and so I had my iron reserves checked:   My iron was at 28, % saturation 6, and ferritin 4. So the hematologist this time ordered two sets of Injectafer (4 infusions).

I should feel better by April 10.

At least I am now caught up on chronicling my crises.injec

Injectafer infusion

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.

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PBC, Portal Hypertension, and a Bloody Inconvenient Route

My last post before my world changed on August 28 was “Another Bloody August. Mysteries and Muddles. And Hospitalists” about my second sudden gastric bleed in two years and my second misdiagnosis by Huntsville Hospitalists and GIs who insist I simply have bleeding ulcers and refuse to consider portal hypertension, a common complication of liver failure, which is the end result of primary biliary cirrhosis.

If you are new to this blog, you are likely confused. One of my recurring subjects is my life with primary biliary cirrhosis, an autoimmune disorder that causes the bile ducts to self-destruct; the back-up of bile leads to cirrhosis, and cirrhosis to liver failure. At the top of my homepage I recently added a link to a permanent page listing both my postings on this subject and some of the most useful websites I’ve come across. I’ve considered pulling these posts and putting them in their own blog, but for now, they are staying here.

I write about this because it is a rare enough disease that firsthand accounts of living with the illness year after year are hard to come by. The blog format gives a new opportunity to illness diarists, a sort of real-time history of our decline. Readers can extract only the posts tagged PBC and see a sort of sped-up version. Like in my case, my first post about having PBC was two years ago, November 13, 2009,  Varicose Veins in my Esophagus? when I was surprised on my annual visit to Kirklin Clinic to learn I’d have to start having endoscopies to check for esophageal varices. Then I decided it was time to write about this illness because I wasn’t going to be able to ignore it forever.

I was right about that; in August 2010 I had a bleed requiring 4 transfusions, and this year another requiring just 2 transfusions. That one landed me in the ICU, however (two weeks later that creep beat the hell out of my daughter, by the way. He knew I’d been very sick. Prince of a fella, that one. I digress).

This August, the Huntsville Hospital staff GI did an endoscopy 20 hours after the bleed and decided I had ulcers. After all, I had had them last year. Only I hadn’t.  In September I visited another GI in Huntsville who determined that portal hypertension, not bleeding ulcers, was the culprit; he started me on beta blockers. Then in October I took a little break from the domestic violence battles to have another endoscopy by the good man Dr. Brendan McGuire of UAB down at the Kirklin Clinic. He rubberbanded several large varices that could have burst, essentially destroying the vessels.

So yesterday, fresh from the non-trial debacle, it was time to return to Kirklin for my annual November pow-wow and bloodletting with McGuire.

I was worried that I was going to find out that my PBC had advanced since I had had a second portal hypertension burst varices bleed.

But no, my blood chemistry remains stable for a person with PBC.

So why the bleeds?

It’s a mechanical issue, according to Dr. McGuire. The blood wants to get up to the heart and lungs. It wants to go through the liver, but the PBC has blocked its usual routes. It could decide to take stronger, wider vessels in my back, for example, as its detour route. But no, instead my blood has chosen to detour through my stomach and esophagus, taking routes that can’t handle that volume of traffic, stressing vessels not meant to handle such loads. When these routes are stressed to the breaking point, they break, and the endoscopy road crew has to come and clean up the mess and patch up the leaks, About the only thing otherwise that can be done is routine maintenance — that is, endoscopy to check out potential problems and band the varices — block the routes — before they have a chance to burst.

So April I’ll have another endoscopy. And who knows, maybe I won’t have a third consecutive bloody August. That would be nice.