An Uneventful Day, Unlike Last August 2

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.

I know what I was doing a year ago this afternoon: throwing up copious amounts of blood. I posted about various aspects of my Dieulafoy’s lesion (a burst artery where the esophagous meets the stomach) episode last August, but here I go again.

I suppose this was the closest I’ve come to dying, but we never know, do we? I mean, how many times have we avoided accidents by being caught at a red light or leaving the house a little earlier than planned? Slipped and bruised our limbs when we could have smashed our heads? Etc.

But leaving the hypothetical, losing enough blood to need 4 transfusions, one right after the next, is serious business. Had I been alone, or in a remote area, or in most parts of less-developed nations, I would not have survived. I was lucky in my bad luck: the EMTs arrived quickly and started oxygen and IV fluids to raise my dangerously low blood pressure, and I got to a hospital where an endoscopy procedure stopped the bleeding.

What seems remarkable now is how little effect the whole event seems to have had on me — physically and psychologically. I’ve had colds it took far longer to recover from. And I’ve had other medical crises that took a lot longer to come to terms with.

I’ve concluded there were two factors in this case that, as horrific as the experience was, made it less traumatic than you might expect:

  • I was so impaired mentally that as the crisis unfolded, I couldn’t process it.
  • It was pure bad luck. There was absolutely nothing I should have done, but didn’t, or shouldn’t have done, but did, that had anything to do with anything.

I’ll explain. When I learned later that I had been losing blood all day, I realized  the cause of some odd responses I had had that day. It’s about twenty footsteps from my bed to refrigerator, but each time I got up to refill my drink, I had to lie on the kitchen floor for a while before returning to bed. I didn’t think this worth mentioning to anyone, however. And when my husband told me that I had to go to the ER, I complained that I wouldn’t because I was too weak to go. How’s that for logic?

On the way out the door I said I had to rest, and so my husband went to get the air on in the car, and my son stayed with me. Then I started throwing up blood. I don’t remember seeing anything else until I was in the ambulance, although I am told my eyes were open.

So much I didn’t know. I thought my kids were stroking me gently as I lay still when in fact they were pressing on me with all their weight to keep me from rolling on my back and choking as I flailed about. I could hear, however (hearing is the last sense to go among the dying, interestingly). I was bothered by what sounded like a bell. Later I figured it was the metal oxygen tank.

I was in no pain. Moreover, in spite of all this drama I was not scared or worried. I was too mentally impaired, I suppose. Even when I came around in the ambulance, all I thought was, so this is what the inside of an ambulance looks like. Once in the ER, I was annoyed by the pain of the IVs and by not being allowed anything to drink, and I wanted the blood cleaned out of my hair. Only when it was time to be knocked out for the endoscopy repair job did I get upset. I guess on some level I feared not waking up.

Much later, I asked my kids what they thought when I got hauled off in the ambulance. They told me they thought I was  going to die. That’s all that continues to bother me; I am terribly sad that they went through that.

But there is a difference between being sad for them and feeling guilty, and I know that there was nothing I could have done to prevent what happened. Nothing.

Pure bad luck. There is such a thing.

Today was an uneventful day. It was an anniversary of no importance to anyone — just another day. For that I remain grateful.

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8 thoughts on “An Uneventful Day, Unlike Last August 2

  1. Lisa: Amazing!! Another Dieulafoy’s lesion story! Do you know how rare they (the lesions and rarer still, stories from survivors) are? I’m sure you do… Thanks for writing.

  2. Hi
    I came across your blog and I love it.I want to let you know I’m a 39 yr female and this past June got ill very suddenly and threw up massive amounts of blood and passed out also.I went to the er and they told me my bllod levels were a 7(not good at all).The gastro Dr. who was great thought it was a bleeding ulcer and he did a scope &burned a couple small ulcers & gave me 3 bags of blood.However 2 days later while in ICU i was getting ready to leave and guess what??I threw up again blood everywhere the poor nurses were in shock of the amount.The gastro Dr. came in and did another scope and diagnosis Dieulafoy Lesion(treatment was to clamp it w 3 clamps and the vessels would die and fall off)All went well and 2 days later i went home.Suprise i was home 5 days and passed out throwing up blood AGAIN!Back to the hospital i went 7 bags of blood this time and the Dr. said the clamps came off to soon and surgery was the only way now to remove it.So they did i have a nice incision about 6 inches long where my stomach is .But a I also tested postive for Hpylori whisch required larde doses of antibotics and i also take protonics for 2 more months,but they want me to stay away from caffeine,&carbonation:( Just wanted to let you know about my story! Lisa

  3. Yes, I do have AMA. Pre- bleeding and diagnosis, elevated alkaline phosphatase did not show up, at least not high enough to worry my doctors. I have had three varices bandings, though my BP is naturally quite low.
    Still getting my mind wrapped around all this!

  4. What a shocking story! In searching for the cause of your low platelets, it seems like an elevated alkaline phosphatase would have shown up. I guess that isn’t always present in PBC — nothing seems absolutely true in all cases, although having antimitochondrial antibodies (AMA) is pretty close [“between 95 and 98% of patients with primary biliary cirrhosis (PBC) have autoantibodies (antibodies to self) in their blood that react with the inner lining of mitochondria”]. But as I’m sure you’ve found out, PBC is rare enough that doctors don’t typically consider it a possibility, and if they don’t test for the AMA they aren’t going to find them.

    When I started throwing up blood, since I already knew I had PBC, I was convinced as soon as I could think again that I had burst esophageal varices. Then I was told I had a bleeding ulcer by the doc who did the endoscopy. I had had no other symptoms for that, and so I had the follow-up not with him but with my hepatologist. He came out of his investigative endoscopy all excited, telling my sister-in-law who was waiting with me that he thought I had a Dieulafoy’s lesion. He couldn’t be sure because the repair job obscured the view, but everything fit for that. You know how doctors are reluctant to say another one misdiagnosed. So I asked him, if he were me, would he continue taking the anti-ulcer meds, and he said no. And I haven’t had any problems since. I asked him at my last annual if he had ever seen a Dieulafoy’s re-burst, and he said he had never seen one before period.

    If you think PBC is something that almost no nurses and surprisingly few doctors other than Gastro guys have heard of, try telling them you had a Dieulafoy’s lesion. To have both — well, if only my “luck” worked for the lottery!

  5. Vomiting quantities of blood on May 6, 2011 was what led to my PBC diagnosis last month (after liver biopsy). I know what you mean about the spaciness of blood loss. For the year before the vomiting event, I was being tested for all sorts of things because of low platelet counts. The biopsy indicates stage three. It was / is quite a shock to have learned all this in the past three months!
    Katharine, mother of three, grandmother of two.

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