Another Bloody August. Mysteries and Muddles. And Hospitalists.

Update: The current (November 2014) hypothesis among my doctors is that whatever they were called in my past posts — Dieulafoy lesions, Cameron’s erosions, or bleeding ulcers — all these bleeds have their source in the portal hypertension which comes from cirrhosis which is caused by my auto immune system attacking my bile ducts, that is, my primary biliary cirrhosis.

Silly me. I look back on my post from earlier this month, An Uneventful Day, Unlike Last August 2, and wonder. There I wrote about how on August 2, 2010, I had an arterial lesion burst where the esophagus meets the stomach, and how nice it was that this August 2, 2011, was so comparatively uneventful.

Little did I know that just 11 days later I’d be back in the ER. Circumstances weren’t quite as dramatic this time around — no ambulance — and I got only 2 transfusions compared to last year’s 4. But in some respects, this episode of vomiting blood was worse.

Why am I inflicting this on you? Actually, I am writing primarily for my readers who like me have primary biliary cirrhosis. There’s more not understood about that disease than is known, and I feel it might prove worthwhile to use the internet as a way to compile and compare histories.

I accept last year’s diagnosis of a Dieulafoy’s lesion, which I attained after consulting my hepatologist, not content with the GI’s conclusion that I had a spurting gastric ulcer. This year the diagnosis is gastric erosion, but I’m not convinced for some of the same reasons I wasn’t last year. While swallowing is a problem some times, once food hits my stomach, all is well — spicier the better.

It seems too weird I can go a year without a stomach-ache while having such a torn up gut that I end up in the ER — too weird considering I am at risk for esophageal varices as a result of portal hypertension as a consequence of PBC.

My intuition tells me the PBC was at least a contributing factor to the Dieulafoy’s lesion, and to this latest event as well.

So this is what I want to know: has anyone else out there with PBC landed in the ER vomiting blood not from varices?

And Now for the Muddles. And Hospitalists.

I keep copies of my medical records. Last year I discovered from the hospitalist’s history that “I got dizzy, and came to the emergency room.” When I complained that this wasn’t an altogether accurate way of describing arriving via ambulance, lights and siren, IV’s in both arms, on O2, my objections were dismissed. This year, I found out that I had been vomiting blood for 2 days when I came to the ER. Wrong again. First, I’m not an idiot. Second, I told the zillion people who had to have the day’s events recounted, that I had vomited twice that afternoon before coming to the ER.

Why can’t these hospitalists listen?

And what, you ask, is a hospitalist anyway? If you are a slow learner like me and it takes you years to realize your [now ex-] general practitioner is too indifferent to bother with hospitalising her own patients, you are stuck with a hospitalist “managing” your case. In my experience this year and last, they are, at best, obstructionists.

This year’s example of foolishness:

In the triage room, I felt really bad, clammy and sweaty. Then I was on a gurney being rushed to the ER trauma room. It wasn’t like fainting, because it wasn’t gradual (when I’ve fainted, usually things turn black but I can still hear what is going on, and then I’m down). I wasn’t out for long, and the ER staff started getting fluids in me as quickly as it could. Seems to me an obvious case of hypovolemic shock. This happens with blood loss.

But the hospitalist saw things differently. He wanted to know about my history of seizures. I don’t have one. What, this has never happened before? Well, yea, once, last year, when I was throwing up golfball-sized clots of blood. Ah ha, so you do have a history of seizures. No I don’t.  How I hate being in no position to resist.

Next thing I knew I was wheeled away and my head was in the damn doughnut — a brain CT, looking for the cause of my “seizures.” CT was normal (duh), so the next day in comes the EEG woman to stick wires on my head. EEG normal — well a bit of excess in the betas, probably related to anxiety (does exasperation count as anxiety?).

This year, 20 hours passed before I had an endoscopy to look for the cause of the bleeding, compared to last year’s 4. Meanwhile, my hematocrit kept falling. Finally, when it hit 7.3, 32 hours after my arrival, I was transfused, compared to pretty much immediately last year.

Was there a connection between the relative slowness of dealing with the problem (blood loss) this year and the the hospitalist’s obsession with seizures?  I don’t expect to ever know the answer. It was, however, most definitely an annoyance I didn’t need.

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8 thoughts on “Another Bloody August. Mysteries and Muddles. And Hospitalists.

  1. Hi, I have been googling anything and everything on Dieulafoy’s lesions since I was hospitalized earlier this week for my fourth bleed and came across your blog. Glad to know I’m not the only one, thanks so much for sharing your experience! I hope you haven’t had any re-bleeds, but reading over your blog and the comments, just had to put my two-cents-worth in for caution. I’ve had four bleeds now, usually a few years apart, but the last one seems to have been relatively easier for them to deal with because I came in when I saw the signs and showed them a picture that the last doc had drawn of where the DL was. So all I’m saying is, from my experience, don’t ignore the signs, it can happen several times. And from my reading, I’m not the only one to have multiple bleeds. But in my experience, it’s easier once you’ve got the diagnosis and the “where to look for it” coz it took five/six endoscopes and several other scans (which I’ve forgotten what they’re called! 😉 to find it. So if you’ve got a diagnosis and a placing, hold onto it! And you’re in my prayers that it won’t happen again!

  2. mooredesignconsulting: I need to update this. I returned to the hepatologist last week. He banded several gastric varices and is now questioning his own diagnosis of last year’s bleed as a Dieulafoy’s lesion since he banded an esophageal varix in roughly the same place where last year’s bleed was (which he only saw once it was clipped). He says Dieulafoy’s lesions shouldn’t rebleed,

    So I’m thinking if you really had a Dieulafoy’s, it’s a one-off — shouldn’t happen again. In my case, the bleeds are related to hyperportal tension as a result of cirrhosis, itself the consequence result of my Primary Biliary Cirrhoisis. This year I’ll return to the hepatologist in six months rather than a year for another endoscopy so he can band any troubling looking varices before another bleed.

    Best wishes.

  3. Hi there, 5 weeks ago I went to the local medical center because I wasn’t feeling good. Dizzy weak etc. A blood test showed I had lost a lot of blood. I was transferred to hospital and there they did an endoscopy on my and found out that I had a “dieulafoy” lesion. I spent 4 days in intensive care and I am still fighting to get my red blood cells up. Is it normal that you will bleed again? In my case the doctor injected some kind of adrenaline into the lesion and I did a second endoscopy 3 days ago and he told me that it was healing fine. I am still worried that it will start again:-) I hope you are feeling better now.

  4. Just found the above post, after responding to your 8/2 post.
    The gastro doc who was on duty in ER when I went for the blood vomiting immediately rushed me to an endoscopy, thinking he would find a bleeding ulcer. When he didn’t, he was like a dog with a bone, determined to find out what was going on. I felt very lucky to have him.
    My hospitalist had a very thick accent, so was difficult to understand. But he, too, listened well and was determined to find a diagnosis.
    I’m sorry this was so miserable for you.

  5. and it can make a huge difference between which ER doc and which hospitalist happens to be on call at that time also. unfortunately. and yes sometimes family practice docs dont have priliveges to admit so their patients either get admitted to hospitalists or UAB docs working at huntsville hospital. hope you are feeling better.

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