My 13th — and Perhaps Final — Portal Hypertension Bleed

At the end of my previous post, My Mother’s Last Three Days, I announced that I had had my thirteenth portal hypertension bleed at my mother’s death bed.*

It had happened. A bleed. A big one. I was taken to the hospital by ambulance.

I think that I have never been nearer to a complete breakdown than I was that night in the ER. Why a bleed now? Even if she had had enough opiates to cloud her memory, my last memory of my mother will be this: not being there for her.

The usual thing, the IV’s, the history, the whole admissions rigmarole proceeded. I told the GI on call that night if I wasn’t going to be scoped in the morning when there may still be a chance of finding the source of the bleed, that I wouldn’t consent at all to an upper endoscopy. The gastroenterologists here have repeatedly delayed up to twenty hours between the start of a bleed and their looking for its source, and then are surprised when they find none. A bleed can stop on its own, and the IV medications, as I have explained before, aid this.

I was taken for the endoscopy at 8:30 or so in the morning.

When I was returned to the room, my husband was there. He had his news, and I had mine. His presence was enough to tell me what his was: my mother was dead.

Mine? The GI who did the endoscopy said that what she had seen was something she could not fix, and neither could her colleagues. I needed to get to a teaching hospital as soon as possible.

I had a stray blood vessel resting over two large varices. Normally, if I understood her correctly, this vessel could have been cauterized, but as it was positioned, there was a risk of burning through the vessel and into my varices, causing a massive bleed.

Things had gone for bad to worse. I was too distressed to be surprised, quite frankly.

So we got in contact with my hepatologist at the University of Alabama in Birmingham about six hours away, and an appointment was set so that he could have a look for himself first thing Monday morning.

Here are the pictures from the July 9 endoscopy clearly showing the problem in my esophagus. I think the doctor said the purple things were large varices that couldn’t be banded because of the blood vessel that couldn’t be cauterized because of its position.

In my next post, I’ll explain how things got worse — again.

*(To catch you up if you are new here, I have Primary Biliary Cirrhosis (or Primary Biliary Cholangitis), and since August 2010, I have had some minor and a some awful episodes of vomiting blood —  hematemesis — because of bursts varices in my esophagus. There have been lots of co-diagnoses along the way, from ordinary ulcer upper GI bleeds, to Cameron’s Erosions, to Dieulafoy’s Lesions, but as will become evident, whatever you want to call the spouting body, the source was likely always the same: the portal pressure in my portal vein in my liver measured 15 on July 16, 2015,  dangerously high. It is now 2 to 4. More on that later.)

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My Mother’s Last Three Days

Easily the most read and commented upon post on this blog is one that I wrote after my father’s death, How to Know When Death is Imminent, Signs Someone is Dying.

My mother died six weeks ago on July 9, 2015. I called my father’s death “hard work.” It was the first for which I had kept vigil, and now I know his was an easy one, at least for me. He suffered from Parkinson’s, dementia, and Alzheimer’s and had been in and out of consciousness for days prior to his death. He couldn’t talk, so I did not know if he was in pai or scared. He rallied to smile once, although I could tell from his eyes he was aware that people were with him.

My mother only lost consciousness at the very end, helped along, I think, by generous doses of morphine.

She had been totally bedridden for 18 months, and full assist (had to be fed) for the last six or so.

But she never became demented.

My mother was disabled by rheumatoid arthritis, and weakened and finally defeated by kidney failure. The last year of her life she was assaulted by edema. Using diuretics compromised her kidney function. Not using diuretics meant her arms especially would look like half-full water balloons, and every time she would be touched, she was in pain. Even the seam allowances on the insides of her sleeves tormented her. This is what we could see. Edema also puts a strain on the heart.

Through careful monitoring, the doctor was adding the diuretics as needed, then pulling back when the kidney function numbers started looking alarming; then repeat and repeat.

My mom had a decent quality of life, primarily because of the graciousness and professionalism of the staff of Pisgah Manor Nursing Home, who I will never be able to praise highly enough. My mom loved her meals, and she raved about the food. I’d leave Pigsah Manor hungry when I’d come to feed her. Let’s stop and consider that: Have you ever heard any visitors say they left a nursing home hungry? And my mom loved to bird watch. We had several feeders going outside her window, and I have never spent so much time bird-watching. This spring and summer brought so many goldfinches.

Then at the end of June, I had a call that my mom was hallucinating horrifying scenarios, like her blankets were on fire and George W. Bush’s dog was bleeding out on her bed (really). The nursing home suspected a urinary tract infection, and the specimen confirmed this; within a few days she seemed much better, but for the first time wasn’t eating every morsel on her plate. I heard a strange sound from her lungs, like a cat mewling.

Monday, July 6, I went out to the home; they were about to call me anyway. My mother had a gurgling sound in her lungs now, but no other cold, flu, or virus symptoms. She obviously did not feel well; she had no appetite and would only drink with persuasion.

When her morning CNA left, she reported that my mom had produced no urine. I knew we were likely in trouble then; I had learned that when my dad died.

That night, I made calls to those I needed to. There was a contingent who thought I should have her transferred to the hospital. They were certain that once there, she’d get some medication that would fix her up just fine. I decided, since she was fully cognizant, to ask her what she wanted to do.

Tuesday a catheter was inserted. After her bladder was drained, it was obvious she was simply not making urine. I told my mother she was very sick, and asked if she wanted to go to the hospital. She declared she would fight this problem at the nursing home among people who cared for her.

The next two days, my mom was frightened and in pain. She said over and over and over again: “I can’t breathe.” And over and over I would tell her that yes she could breathe, if she could not, she couldn’t talk. She had supplementary oxygen; we would tell her to breathe through her nose calmly and slowly and out through her mouth. It didn’t work.

“I can’t breathe.”

She sounded like — and likely felt like — she was drowning. Edema had spread to her lungs.

Still no urine: we were coming to the end. The nurses did not hide this from me. Always there is the caveat that no one knows for sure, people will surprise you and so on, but there was no reason to believe this would be one of those times.

I was encouraged to go home and rest. Wednesday morning when I walked in I immediately noticed two changes. My mom was ashen, especially on her upper lip area, chin, and the region of the face around her mouth.

I am not trying to be poetic when I use “ashen.” It is used for a reason. The color is much the same as ash.

I’m also not trying to be poetic when I say that the light had gone out of her eyes. This is hard to explain, but there was a haziness or dimness. Perhaps only someone who knew my mother before would have seen the difference. She was, however, still fully conscious, and still panicking and saying “I can’t breathe” and “Help me.”

I asked her again about going to the hospital, and she refused. I told her she was very, very sick.

She asked if she might die. I said yes. When? No one knew.

She seemed genuinely surprised by this. Here she was, 6 weeks shy of 86, completely bedridden and disabled, was refusing food and water, not urinating and didn’t think she could breathe — and yet she was surprised.

I asked if she wanted me to make any calls so she could talk. No. The TV had been off for a few days now, and we were down to her caregivers, me, and her.

She said she was scared. I said what of. She looked at me like I was a total fool, and said, “Dying, of course.” She agreed when I offered to call a chaplain.

The rallying that was so dramatic with my father took a different form with my mom. My mom was exceptionally determined. She had strong opinions, and this blog is named after a phrase of her that could strike fear in those on her list (I’m going to have a little talk with him. . .”) while spectators would get the popcorn popping and wait for the fireworks. She was also pretty good at denial.

When my daughter and her boyfriend came by, she brightened up; she loved visits from my daughter. But after ten minutes, my mom told the two to get along with their evening and go out and enjoy themselves, that she had no intention of dying that night and that she would see them tomorrow. And the next day. And the next.

She tried the same with me, and I went outside to make some calls. Coming back in, I encountered the Perfect Daughter, there five days out of seven, who told me my mom bragged that she had “sent them all away.”

That was the last liveliness I saw from her. The night went on. There was no more conversation, just  “I can’t breathe” and “Help me,” and me watching the clock for when she could have more morphine. The intervals were less, the dosages greater.

My mother died around 9 am Thursday morning. I was not there. She was still conscious when my husband arrived to take over, and she was worried about me.

I was in the hospital waiting for an upper endoscopy.

Midnight I had gone to get the meds nurse; she had delivered the shot, and I was feeling a bit woozy, but blamed it on tiredness and stress and leaned my head against my mom’s railing. The next thing I knew, I was looking down on myself, and I was covered in blood, the chair was covered in blood, and there was a pool at my feet.

My mother was crying out,  “I can’t breathe. . . Help me.”

I had to tell her I could not, that I needed her to press the call button. She couldn’t. So I staggered into the hallway and yelled for help.

That was the last I saw of my mother, and the last she saw of me.

I had had my thirteenth portal hypertension upper GI bleed at her deathbed.

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

How It Feels to Have an Injectafer Iron Infusion

Today (8/25/16) I sent an e-mail to American Regent, the company that markets Injectafer in the US, with a link to the comments page. On the contact page, there is an email address for reporting Adverse Drug Events, if you would like to contact them yourself.

I have ceased having bleeding from my varices and my blood counts are normal. I am glad that I was able to tolerate Injectafer well enough to get my body the jump-start required to bring my iron reserves to normal levels.

———————-

The usual caveats about this not be medical advice, etc. all apply to the following. My purpose in writing this post is to provide something I couldn’t find when I was scheduled for and after I had an Injectafer iron infusion last April: a personal account. There are a number of resources for studies of Injectafer’s safety and effectiveness, but that is not all I want to know.

Injectafer was approved by the FDA in July 2013, so it is fairly new. My understanding is that the older types of iron infusions are a lot more problematic, side effects were more common, and it took hours to receive the infusion. But I have no experience with that.

If you are here, you probably already know that delivering iron through an IV is an alternative when oral iron supplements haven’t worked in alleviating iron deficiency anemia.

Followers of this blog will know that, as a consequence of primary biliary cirrhosis and portal hypertension, I have had 10 gastric bleeds from burst varices and 17 transfusions since August 2010. The past (nearly) 14 months have been good ones, with only a single 2-transfusion bleed in February 2014.

However, in spite of the 2 transfusions, I continued to feel run down and fatigued. For one thing, although the normal hemoglobin range is 12 to 15 (or 11.7-15.5. or 11.3-15.2 — depending on the lab; I have results from 3 labs here), transfusions after a blood loss, which usually adds about 1 point to the score per transfusion (or so I think — again, an ordinary person’s understanding and not a hematologist’s is all you are getting here) are usually stopped once the patient gets into the 10s. One reason is that with every transfusion, the possibility of having a reaction to the next is more likely. Another is that usually the patient’s body will bring itself up to normal levels in a few weeks either through diet alone or with iron tabs.

The first of April, about 6 weeks after my 2 February transfusions, I had my labs done and my hg was 9.7. I can cope in the high 9’s, but coping is about all. Basically, being anemic means being oxygen deprived. If you want a similar experience, go hiking at sea level for a few hours, and then go above 12,000 feet and do the same. In another couple of weeks I had crept up to 10.5 on the 12 -15 scale; better, but not great. My family doctor sent me to a hematologist. My iron level  was 31; normal is 40-160. Two Injectafer infusions were scheduled for a weak apart for early May.

Hematology and oncology go together, and I know that since I don’t have cancer I should have nothing to say about this other than how grateful I am. But the truth is, it is really a sad and sobering experience to have to go to an oncology infusion center. Most people are there for chemo. Of course I knew I was the lucky one in the room, but you know, it is still depressing. In fact, I think the worst part of the whole process was when I was waiting to schedule my little infusions and the man ahead of me broke down crying at the desk. The doctor came out and said this time it wouldn’t be so bad. It didn’t help much.

Getting the infusions was quick. Each took about 20 minutes for the little bag to drain into my veins. It hurt a bit, but not badly; it’s an IV and those are rarely for me painfree. The iron looks like you might expect — brownish with a bit of red.

I thought the infusion would have immediate effects, that I would leave the building infused with energy.

It does not work that way.

Most surprising was that I actually felt worse for several days after the first infusion. I felt like I had been run over by a steamroller that had then backed up and done it again. I felt like I had reached the end of hope, that for the rest of my life I would never again have energy.

When I mentioned this to my hepatologist in September, he said he had heard this from others, so it is not just me. The thinking is that any time the body is hit with a sudden infusion of something it has never had before — like a load of iron all at once — it is going to have to process it, get used to the idea, make some internal adjustments, and that is fatiguing,

I didn’t feel much of anything after the second.

But about a week later, I  noticed that I wasn’t dragging around so forlornly.

After another week, I stopped eating ice.

A Connoisseur of Ice

I used to eat ice all the time. I mean it, all the time. In the middle of the night I would awaken to eat ice. Simply sipping water wasn’t enough; I’d have to go to the freezer for ice. I’d never leave home without at least one tall glass full. When I traveled I carried a small ice chest, full of ice. I decided I would probably not ever enjoy going to Europe again because I remembered the one time I went to the UK, 35 years ago, getting ice was hard, and I simply liked it then. I had my favorite source of ice: Sonic. One of the things that made hospital stays tolerable was that hospitals have good ice. The only thing I missed when I moved a few years ago was the crushed ice dispenser on my fridge door. I craved ice.

Then I didn’t. I still am thirsty all the time because I have Sjorgen’s syndrome which means my salivary glands are also under attack by my immune system, so my mouth is always dry, and my teeth have gone to hell, but I don’t eat ice. I drink fluids.

Eating ice is a pica — the consumption of non-nutritional substances, like chalk, soil, or sand as well as ice. Frankly, for an anemic, it seems it would make more sense to crave soil, but I’m glad it doesn’t, and of course, talking what makes more sense among things that don’t make sense is senseless itself.

But no one knows why people with anemia crave ice.

My Normal hg

On June 2 had an hg of 13.9, up from the 9.7 hg of April 2: a significant improvement, and my iron reserves zoomed from 31 to 163 at the end of August. So now I have stored iron with which to make new red blood cells. On 9/11 my hg was 13.6.

So my experience with Injectafer: excellent.

I wish I had known it would take weeks to work and I’d actually feel worse for a while after the first infusion, but now, if you are wondering what to expect, you have one report from the field.

Why I’m Cross with Ian McEwan

I’ve read all of Ian McEwan’s novels from The Cement Garden (1978),  but I am frustrated and annoyed by The Children’s Act, his latest.

Briefly, the novel is about a period of crisis in the life of a high court judge, Fiona Mayes, who is emotionally exhausted from her collapsing marriage and the stress of making life and death decisions in family court. Then she receives the case of Adam Henry, a 17-year-old suffering from leukemia whose parents have refused to grant permission for him to receive blood transfusions, and to complicate matters, the patient himself has said that he will not go against the dictates of his Jehovah’s Witness church.

To prepare the reader for this central episode, McEwan develops Mayes’ character by reviewing her thoughts on several other judgments she has found difficult. These cases, used to develop a fictional character, are based on actual rulings evoking the Children’s Act of 1989, which orders that in any court action pertaining to a child, “the child’s welfare shall be the court’s paramount consideration.”

McEwan has discussed the factual rulings for his novel’s cases regarding conjoined twins, a mother falsely accused of murder in her infant’ crib deaths, conflicts between ex-spouses over the religious upbringing of their children, and even a case of a teenage Jehovah’s Witness who needed and wished to refuse a blood transfusion. The first two chapters are what I’ll call factional — at least as much fact as fiction.

I have no problem with this. But in the third of the novel’s six chapters, McEwan abandons factual fiction for fantasy, and the departure is abrupt, bizarre, and structurally and thematically unjustifiable.

After hearing testimony in the matter of Adam Henry, Judge Mayes decides to stop proceedings while she goes to his hospital room to visit with the boy.

The problems begin as soon as Fiona and the social worker after taking cabs through London enter Adam’s ICU room. Do they first scrub their hands? Put on protective masks? Gowns and booties? I’d think they would, not of course to protect themselves from his cancer, but out of concern for his steadily weakening immune system. That morning in court his doctor testified he had a white blood count of 1.7 (the normal range is 5 -9).

Adam looks pale and wan, and is short of breath. Otherwise, he hardly seems like the person described in court who was diagnosed  with leukemia after two days of “unbearable” sharp stomach pains, which began in mid-May (this scene is set in mid-June). There is no sense that he is still in any pain. The leukemia is not being adequately treated, so why is the pain gone? He certainly does not reason and act like a person on painkillers would, especially not on those that would alleviate “unbearaable” pain.

What impresses Fiona first is that Adam is surrounded by “life support and monitoring equipment” as well as “books, pamphlets, a violin bow, a laptop, headphones, orange peel, sweet wrappers, a box of tissues, a sock, a notebook, and many lined pages covered in writing. Ordinary teenage squalor, familiar to her from family visits.”

Ordinary teenage squalor? In the ICU? Really?

What else do we know of Adam’s medical history? Early that afternoon, his doctor reported that when Adam was admitted to the hospital, his hemoglobin was 8.3. Three days prior to the court hearing, it was 6.4, and that morning it was 4.5. The doctor added that if it dropped to 3, “the situation would be extremely dangerous.”

What’s normal for a 17 yr old boy? Between 13.8 and 17.2 g/dL, according to the World Health Organization. So if his hemoglobin had dropped another half point over the course of the day, his organs are receiving one-third of the oxygen they should. That is what hemoglobin does; it carries oxygen.  I think it safe to say he passed into the extremely dangerous category some time ago. Usually a transfusion is ordered when the hg drops into the 8’s, and while a gradual loss of hg might be easier for the body to adjust to than a sudden bleed from an accident, remember that not only is Adam extremely anemic, he has cancer.

Now, I find it very hard to believe that someone with an hg below 8 or 7 or 6 is going to be composing poetry and suffering no more problems than occasional shortness of breath.

But it’s the final moments of Fiona’s visit with Adam that had me banging my head. Since he became ill and as the anemia began to steadily worsen, Adam has been teaching himself to play the violin.

So this boy with less than a 4.5 hg plays his guest a piece, and Fiona starts singing along to “The Salley Cardens.” But wait, there’s more. They do a second take, and on Fiona’s instruction, Adam flawlessly changes key, now playing C sharps.

When the body is starved of oxygen, the brain is starved of oxygen. Confusion is a big problem for as long as the patient retains consciousness. The oxygen afforded the brain is going to be used for the most critical funtions of survival. Getting the C#s right in a violin piece is not a critical neurological function.

It’s an absurd and ridiculous scene, and it is the central one of the novel. If all leading up to it hadn’t been so fact-based, maybe it wouldn’t have been so jarring. If McEwan had waffled about the bloodwork, calling Adam simply seriously anemic rather than including specific real-world based numbers, it wouldn’t have seemed as preposterous a scene.

Why then? Why go through all the medical testimony regarding Adam’s labs and then present him in a way that does not reflect the implications of the facts presentd? I can see no thematic reason for this sudden departure into fantasy.

A failure of fact, a failure of faction, a failure of fiction.

The Guardian called A Children’s Act “a masterly balance between research and imagination.”

I call it inane.

Always Bleeding from the Same Scar: Bleeds 9 and 10

There’s a new series of posts I am planning, but first I need to catch up on my bloody misfortunes. It’s been a year since my last post on a bleed, caused by portal hypertension, in turn itself caused by damage to the liver, in turn caused by my autoimmune illness, primary biliary cirrhosis. But I have had two since then, and am now up to 17 transfusions.

First, let me say something about these transfusions. I wouldn’t be here tonight if it weren’t for people who give blood. Sometimes when I’m wandering around, I ask myself: was it her? Or him? Whose blood is in my body? I cannot know, but I thank anyone who has ever given — or even just tried to give — blood. These are rare and strong and generous people.

Back to these bleeds. Number 9 hit in September, when I was in Miami, trying to help my 84-year-old mother, and was a 2-transfusion bleed, as was bleed 10, that waited until February, less than a month after I moved my mother out of Miami. This one occurred a year to the day after my beloved collie died of hemangiosarcoma, a canine cancer that causes sarcoma to develop. Mine was on my dog’s spleen. It ruptured, and he bled out.  

The doctor who performed the endoscopy here couldn’t find the source of the bleed.

But a month later when I went to see my hepatologist at University of Alabama’s Kirklin Clinic, he found an actively bleeding varix at the fundus, where the stomach and esophagus meet. The site of multiple bleeds of mine has been at that little crook to the left of where the arrow is pointing.

File:Illu stomach2.jpg

In fact, this is the same site as my first — and still worst — bleed, the one that that the GI who saw me in the ER thought to be a bleeding ulcer and that for a while my hepatologist thought might be a Dieulafoy’s Lesion or a Cameron’s Erosion.

But after reviewing my records, now the theory is that the same area keeps bleeding because it was weakened by the three clips (like tiny clothes pins) put in as an emergency approach to shutting down the 4-transfusion bleed I wrote about back in August 2010.

Banding, essentially using the equivalents of rubber bands, to cut off the supply of blood to a bleeding varix or one that looks like it could become a bleeder, is the preferred approach.

The clips are a last resort.

The reason I keep having these bleeds may then be because the delicate walls of the esophagus have been compromised by the clips.

One thing others with primary biliary cirrhosis should know is that having these bleeds is extraordinarily unusual. I asked my hepatologist if other PBC’ers have similar problems with repeated bleeds, and he said, no, he has never seen or read of a comparable case.

I think then that it is best we end with the inspiration for the title of this post: David Bowie’s “Always Crashing in the Same Car.”

 

 

Mental Health Emergency Services for Teens: What to Do When Your Community Fails You

It’s been months since my last post. I don’t like to give advice. Provide information and resources, sure. But giving advice about a life and death matter — that worries me. But maybe not giving advice is equally risky, so here goes.

Say you are in a town like Huntsville, Alabama, where the hospital, in spite of being the only hospital of any size for a 100 miles, and in spite of having a separate facility for women and children, and in spite of being an aggressive investor buying up other hospitals, hasn’t a single bed for a child or teen in need of emergency psychiatric intervention. What do you do? (more…)

About a 15-year-old’s Suicide and a Principal’s Grandstanding

Usually when teenagers kill themselves, people react with incredulity. Not in the case of 15-year-old Christian Adamek of Madison, Alabama, a suburb of Huntsville, AL.

Here’s what happened, at least as much as is publicly known at this point. On September 27, Adamek streaked across the field during a high school football game. Even this much is in some dispute. I read one comment that said he had a sock on over his privates that came off when he tried climbing a fence at the end of the so-called streak. Today I read another that claims he was wearing boxer shorts, which means this was no streak at all.

It’s unlikely that the mainstream media will clear this up. Now, they have clamped their mouths shut. Such wasn’t the case while Adamek was alive, however. More on that later.

It’s not entirely clear to me whether Adamek was arrested that night. If he had been, then there would have been no reason for school “administrators [recommending] that Adamek have a hearing in the Madison County court system to determine if formal charges would be filed,” as television station WHNT reported, since such a hearing would follow an arrest whether the principal asked for one or not.

There’s always a strong police presence at football games, so if the police didn’t think what happened required an immediate response, why did Sparkman High Principal Michael Campbell take it upon himself to speak as if he intended to criminalize the act?  It has been suggested that this was all about scare tactics, but why go on camera if there was never the intention to follow through? Was this Campbell’s “prank”?

By Tuesday, Adamek was no longer in school, and his sister tweeted he was “facing expulsion.” Not suspension, mind you, but expulsion, which means permanently kicked out of his school. Since the school-leaving age in Alabama is 17, he would have ended up at some rough alternative school, I expect. True, he hadn’t yet had his expulsion hearing, but principals usually get their way.

So academic future, chance of getting into most colleges: gone. Next few years of schooling: hell.

You might think that as extreme as that course of action seems, it would have satisfied Sparkman High School’s Assistant Principals and Principal Michael Campbell’s desire for— well, what exactly? And again, Campbell may have been acting in concert with the School’s vice-principals, but he is the principal. Shielding his underlings from criticism and taking all the heat himself may seem an act of valor, but if the most vigorous instigators of this scare campaign are shielded, how does this help students? If the others in the Sparkman administration aren’t willing to come forward individually and say, hey, it wasn’t Campbell acting alone: I put the pressure on Campbell to go to the press, then do any or all of them have the integrity and character to influence students?

Did Adamek realize that his brief run down the field would end his days as an ordinary high school student? I doubt it. Streaking doesn’t appear on the list of 72 offenses (58 of which are in the top tier, level 3) in the Madison County Schools Code of Conduct. A more savvy kid might have realized that he could be charged with S11 Disorderly Conduct, or the ever-useful S58 Other Incidents (also on this level are, for comparison, S21 Homicide, S23 Kidnapping, S34 Tobacco Use and S16 Electronic Pagers. Go figure.). He probably wouldn’t have been surprised to have been beaten by the principal on Monday morning, since Madison County Schools still use corporal punishment.

But he probably wouldn’t have expected to have to worry about  S30, Sexual Offenses.

Kids, please, please, if you want to fight or streak, don’t do it at school or a school event. Do it anywhere but. Why? Because if you get in trouble at school, your principal can call in the law. If you do it elsewhere, the law is not likely to call in your principal.*

This seems like a kind of double jeopardy to me.

Adamek realized he would likely be expelled. Then Tuesday night, Principal Michael Campbell announced on the evening news that the boy “faced legal charges” and that “the incident was much more than a mere prank. ‘This situation was totally different, something not related to that at all.’”

What did that last sentence mean? Now that Campbell has shut up, we’ll never know. It seemed to me that he was trying to make a harmless, victimless crime — if in fact it was any crime at all — into something far more sinister.

The “legal complications”? Campbell mentioned “public lewdness”; another possibility would have been “indecent exposure, the latter of which is tied to Alabama’s sex offender laws.”

Now this is where Adamek’s situation really became dire. If he had beat someone senseless as a 15-year-old, and been judged delinquent, once he reached 18, he could have sought to have his juvenile record sealed. It doesn’t work that way with sexual offender status. In Alabama, the law “requires adult sex offenders to remain in the state sex offender registry for life but makes exceptions for some younger offenders.” Some youthful offenders may then not be on the register for life, but for exactly how long is vague.

And it was possible that Adamek could have faced time in the juvenile detention center. Most  (83%) in Madison County’s in 2008 committed non-violent crimes, by the way. Now, it might not be true, but anyone in America knows what is commonly believed about incarceration of males: rape is widespread, and sex offenders are considered the lowest of the low.

By Thursday Christian Adamek was dead.

To recap: we have a 15-year-old kid who it doesn’t appear was anything like streetwise or vaguely knowledgeable about the [so-called] justice system who runs down the sidelines during a football game either naked or in his boxers or somewhere in between.

His principal Michael Campbell and the administrators at Sparkman do the worst they can in the academic arena: starting expulsion proceedings. Then Campbell goes on TV to make sure that his intentions to pressure the DA’s Office to make the kid’s life a long-lasting legal hell are publicly known.

Some teenagers choose to break the law and commit violent crimes. It is hard to have much sympathy for them if they despair over the consequences. And catastrophically bad things happen to teenagers: serious illness, causing accidents, being the victims of accidents, being the victims of crime. Even for those who are at the wheel when a serious accident occurs, an accident, is after all, an accident.

Christian Adamek fell into a weird category: yes, he acted intentionally. But surely he had no clue what the fall-out would be. He engaged in a juvenile act. He was, after all, a juvenile. He was supposed to have had chances to learn about the world.

Principal Michael Campbell acted intentionally too. The similarities end there. He is an adult. He is an adult who is responsible for the education and safety of his students. He is expected to use good judgment. He is supposed to know a little bit at least about the impulsive behavior of teenagers. He might be expected to understand their ignorance of the legal system, to be able to grasp that a 15 year-old might not make the connection between streaking (or sort of streaking) at a football game and ending up on the Sex Offender Registry (how many adults would?). Surely he’d be expected not to talk to the press about a specific case at his school, knowing fully well that due to social media, Christian’s identity was widely known already and his and the mainstream’s media not naming Christian was an adherence to formality and irrelevant in practice.

I doubt that Campbell and his colleagues committed an actual “crime.” Even if they did, trust me, the Madison County AL DA wouldn’t bother with the case.  No, all Campbell did was act with such abysmally poor judgment that he made of a trivial non-event a matter of life-and-death. Literally.

Why? What could have motivated such idiocy? Well, allow me to speculate a bit here and give you some history on the man. Superintendent Col. Casey Wardynski and the Huntsville Board of Education paid $22,000 to a consultant to find them two principals. Campbell was one; he came from Fairfax, VA, a favorite stomping ground of the Colonel, and was hired to lead Johnson High, a school “labeled as ‘failing’ under state standards” at a salary of $102,596. He arrived in fall 2012 and by April 2013 had found his way to greener (or make that whiter) pastures at Sparkman, failing to raise Johnson from its failing status, and feeling, it appears, no compunction about having wasted the money City of Huntsville taxpayers spent on his recruitment. While I can’t say I blame hime for wanting to get out of the Huntsville CIty Schools, he should have looked into the situation he was getting himself into before accepting the job.

OK, so now he is lord of his new universe, and then this kid streaks a football game. Time to show all the world that there’s a new sheriff in town, a Real Man, a Tough Guy, who won’t let HIS kingdom be besmirched by some juvenile hijinks.

In a just world, Campbell would be fired and banned from ever having a position of authority over any child. If he isn’t responsible, then let him speak for himself. He had enough to say before Christian died.

I doubt he has anything to worry about. Not a thing.

____________

*Case in point and a study in comparative justice: Not far from Sparkman High, when one 15-year-old beat another senseless at his home, the Huntsville City school both attended was indifferent. Even though the perp admitted hitting his victim to a school counselor, that counselor couldn’t even bother returning  calls from the Assistant DA. Nor did his principal.
This same perp posted a picture of himself with his pants below his knees at an open air shopping center on a Saturday afternoon while on probation. The head probationary officer for juveniles in Madison County was indifferent, noting that the terms of his probation did not prohibit dropping his drawers in public, and besides, you see that kind of thing on TV all the time.
And when that perp turned 18, he could petition to have his record sealed.
In other words, if Christian Adamek had stayed home from that football game and instead slapped, head-butted, strangled and banged his girlfriend’s head against the wall multiple times, he would have been a whole lot better off  legally, his academic situation unaffected, and likely he would have been alive today.

The Sixteenth Street Baptist Church Bombing: Introducing longtimecoming1963.wordpress

In two months much will be said about the fiftieth anniversary of the bombing of the Sixteenth Street Baptist Church in Birmingham, Alabama, which killed four girls as they prepared for church services on Sunday morning, September 15, 1963. Dozens of others in the church that morning were injured, including Sarah Collins, sister of one of the victims, who spent over a year in hospital. She’s been forgotten. So have two other black children killed that day: James Ware and Johnny Robinson. Who remembers them?

The deaths of these girls brought international attention to Birmingham and to the depravity, cruelty, and evil of those eager to kill rather than see extended to blacks the civil rights granted — at least on paper — by the Constitution.

Would their deaths still be remembered if the girls had been killed in a bombing at a roller rink the previous night? Or if it had been four deacons killed rather than four children? Who knows?

But in setting a bomb to detonate in a church on a Sunday and by killing four girls, the bombers broke two taboos: you don’t bomb churches on Sunday mornings and you don’t kill girl children.

What will be remembered this fall, I expect, is the worldwide outrage at this atrocity. What will be forgotten is the aftermath.

Four girls are murdered in an American church. What response would be expected other than for local, State, and National law enforcement and the citizenry to demand that the murderers be identified, prosecuted competently, and punished appropriately?

This didn’t happen. It could have happened in 1963, but the first conviction of one of the four men who executed the attack did not happen for 14 years, in 1977. Two others were convicted in 2001, 24 years after the first and 38 years after the crime.
How? Why?

What kind of society does not even bring to trial those who kill children?

As early as October 1963, Elizabeth Cobbs was working with the FBI to build a case against  her uncle by marriage, Robert Chambliss. She knew what the Ku Klux Klan did to informers. She was a single mother of a young son, struggling to get by, and she cooperated fully with the authorities. After months of risking her life meeting with agents, J. Edgar Hoover dropped the case. She knew what had happened but could do nothing more.

Then in 1977 Alabama Attorney General Bill Baxley reopened the case, and to make a long story short, Elizabeth Cobbs’ testimony was finally heard in court and Robert Chambliss became the first man convicted for the bombing.

In 1994, Elizabeth H. Cobbs, now Petric J. Smith, published Long Time Coming: An Insider’s Story of the Birmingham Church Bombing That Rocked The World. It is out of print, its publisher defunct.

This is a story that shouldn’t be forgotten, and so Smith’s son and I have posted an electronic version of the text as a book blog here at WordPress: http://longtimecoming1963.wordpress.com/. It’s a story of the moral courage of one individual and the active participation of the powerful in sheltering those who were evil and who did evil things.

This spring President Obama awarded the Medal of Honor posthumously to the four girls killed. A great photo op, a nice symbolic gesture. But if he really wants to honor their memory, may I suggest he turn to the last chapter of Long Time Coming and choose any one of its questions about what happened in Birmingham, in Alabama, and in Washington DC in the months following September 15, 1963, and get to work on finding the answers and holding those responsible who chose not to do their jobs. A few are still alive. I guess there isn’t an equivalent opposite of a medal to be awarded posthumously to those who aided and abetted murderers.

By the way, in case you are wondering about the other two children killed in Birmingham on September 15, 1963, Cobbs/Smith can tell you:

During the afternoon two more black children died in other incidents in Birmingham: James Ware was shot on his bicycle by two white youths on a motorcycle, and Johnny Robinson was shot in the back by a policeman for throwing rocks at a car loaded with catcalling white youths displaying Confederate flags.

The juveniles who killed Ware were identified from photos taken at an NSRP rally that afternoon. One pleaded guilty to manslaughter; the other was convicted at trial. They each received seven-month suspended sentences.

Officer Jack Parker said he was firing at the feet of Johnny Robinson and his companion — with a shotgun — at 100 feet, and he was surprised when the youngster “appeared to stumble and fall.”

Sixteenth Street Baptist Church, Birmingham, Alabama
Credit: The George F. Landegger Collection of Alabama Photographs in Carol M. Highsmith’s America, Library of Congress, Prints and Photographs Division. [LC-DIG-highsm-05063]
The Wales Window, which was donated to the Sixteenth Street Baptist Church by the people of Wales to replace a window destroyed by the 1963 bombing of the church.