Beware of “Bubble Soccer” or Knockerball

See photo attribution below (Creative Commons)

There’s a new craze in the sports world that PTAs, principals, parents, EMS, ER personnel, orthopedists and neurologists need to be aware of.

It goes by the deceptive name “Bubble soccer” [also Knockerball] and the claim is that, how can you possibly get hurt in a bubble (like wrapping your child in bubble wrap!). Plenty of ways, it seems, especially if those outfitting and presumably monitoring the players are ignorant about its dangers.

It doesn’t help that ER personnel greet their first cases with a smirk: so you managed to hurt yourself wrapped in a bubble?

From the videos I have watched,* I have seen very little soccer going on. Rather, the playing field looks like a lot of people playing bumper cars — without the cars, like a freeform smash-up. What could possibly go wrong?

Some suppliers are themselves concerned about unsafe practices:

San Diego Bubble Soccer:

“It may be ignorance or negligence, but either way, it’s incredibly dangerous. Consider [May 2016] this brain injury incident in Atlanta that was caused by a collision like this one. In both cases, the equipment was extremely unsafe and should never have been used. We have seen equally dangerous bubble soccer in San Diego.”

Six months later the Emory University neurologists who treated the player mentioned above published “How safe is Bubble Soccer?” in the Journal of Clinical Neuroscience.

Then there is this one  (spring 2017) from North Alabama: “Shoals student suffers severe brain injury playing Knockerball”. I don’t know if he survived or is paralyzed like the man who won $45 million from a Missouri Knockerball franchise.

Risk Assessments can be revealing:

https://www.vertigozorbing.co.uk/wp-content/uploads/2018/03/risk-assessment-body.pdf. Note the overall-risks are highest when staff are negligent. Untrained or unvigilant party-rental staffers are not the type of people best equipped to protect your or your child’s safety.

Youtubes: Even when supervised, the potential is there: https://www.youtube.com/watch?v=PkJdTwgGnU8.

In addition to risks for arm and leg breaks, whiplash and torn ligaments, when the head is jostled around, concussions occur. The marketing site Mindful Marketing provides a stern warning (“Concussion Ball?”) on the dangers of this “self-regulating” (we know what that means) sport.

You can search any metropolitan region and see ads aimed at summer camps, the birthday party market, school field days, and church groups from party rental companies. They may have enough years behind them that they can manage ballpits for elementary kids, but would you trust them with the kinds of issues noted by the Risk Assessment above?

One school system won’t. Remember, this craze is less than two years old. It has already been prohibited by the Fairfax County Schools in Virginia. This district is a bedroom community for Washington DC and thus I imagine has a fairly high rate of lawyers per capita.

They know a potential liability suit when they see one.

It’s the traumatic injuries that make the news and the medical journals. But if there are traumatic ones, it’s a good guess there are lesser ones, and comments are invited.

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*This one is from the Knockerball website; it is the game as it should be played with adults who aren’t trying to hurt one another. I think Fairfax County Schools considered, if this is the best, what would be the worst? What happens when the kids have aggression to release and vary widely in height and weight? What happens if one shows distress and a teacher suits up to investigate? Wham, that’s what.

Photo Attribution: By Julkina – Own work, CC BY-SA 4.0, https://commons.wikimedia.org/w/index.php?curid=39183682

Goodbye to all that: No more sticks. No more scans.

I never intended for this to become an illness blog, but once I became symptomatic for the Disease Formerly Known as Primary Biliary Cirrhosis, I could find no narratives of what to expect, and so I decided to chronicle my mess.

Last month I told my hepatologist we were done here. No more scans. No more sticks. There is no point in watching the numbers because there is only one way to possibly delay dying: a transplant.

Don’t fret; there is no reason to believe I won’t be around a while. But I have spent too long seeing my life as a slo-mo train wreck.

I felt tremendously free after announcing the end to tests. He said now my MELD was 15, it was time to start thinking about getting on a transplant list. I told him no, it was not.

I’d known this day was coming for 11 years. I had been ambivalent about it, but these are the reasons I told him no. (He said I can always change my mind). I don’t advise anyone else to take this route. If my children were younger, I would not.

1. There’s a fair chance that after a year or so, the autoimmune illness PBC could come back with a vengeance.
2. I don’t want to spend the rest of my life on immunosuppressants.
3. Some programs require you to re-house your fur people. Our household includes 3 cats, 2 dogs, and 3 ferrets. Those cats and dogs aren’t going anywhere. (The ferrets stay on the top floor with my daughter.)
4. Even if all went perfectly (not the way they usually do for me), a transplant would start at $150,000. They can easily end up costing $800,000+ range. Even if my insurance coverage doesn’t change in October, it would only pay for 80% of the cost. So we are looking at a minimum of $30,000. While we could swing this, we could not do the upper range without accruing enormous debt. My husband would be willing to do whatever it took, but I am not willing to see his life or our daughter’s (who is still in school) complicated by such a huge gamble.
5. I’m not entirely sure that on a spiritual plane donors are dead.

I think my hepatologist might have been relieved because it saved him telling me I may not be a candidate since in between this and my previous visit I had been diagnosed with a severely enlarged left atrium. Hearing this was a bit of a relief since it means that I could drop dead and miss all the liver failure gore.

So how am I? I’m tired, all the time. This could have much to do with the heart and little with the liver, or both working against me, not to mention a whacked auto-immune system.

The worse thing is likely unrelated, although it remains unexplained in spite of every test in the box. Too often I have “steakhouse syndrome,” even with macaroni. So even eating is not pleasurable any longer.

But I can still read, so I am fine. I don’t get out much but I have an active cyber-life.

I’m sick of being sick. If anything interesting happens, I’ll post. Otherwise, I’d rather write about something–anything–else or not at all.

Hepatic Encephalopathy: On Knowing I Didn’t Know What I Knew I Know

This post assumes you’ve read the two preceding ones: “My 13th — and Perhaps Final — Portal Hypertension Bleed” and “In Which a Transjugular Intrahepatic Portosystemic Shunt (TIPS) Is Installed in My Liver.” This post is my subjective, and given the subject, patchy account of a few dreadful days. I will share what I later learned about hepatic encephalopathy in a future post.

For well over half a century, I’ve known the answer to the question: What is your birthday?

Even when I was missing my four front teeth and saying “December twenty-six” was a twister, I could answer that question: It’s the day after Christmas.

On July 23, 2015, one week after my TIPS procedure, I couldn’t find the answer. I knew I knew it, and that knowing—that is, knowing this was happening—that I had lost a nearly lifelong memory—was horrifying.

I was suffering from hepatic encephalopathy.

My liver could not handle the ammonia it normally filtered, the ammonia had crossed the blood-brain barrier, and I was unable to make new memories or access information long stored and always before easily within reach.

I left the hospital Sunday, July 19, 2015. The installation of my Transjugular Intrahepatic Portosystemic Shunt (TIPS) was deemed a success. My portal hypertension, which was 15 (dangerously high) when the radiologists began the procedure, had dropped to a normal range of 2-4. At first my liver function numbers were all over the place, but that was to be expected. My ammonia levels were high, but had steadily dropped. My digestive system seemed to have woken up from the general anesthesia. I complained of constipation, but I did have a bm.

I know that Monday I slept all day, and I expect I did on Tuesday and Wednesday as well. I had had a rough two weeks.

The first weirdness was  pre-dawn Thursday. I could not get warm. I like a cold room when I sleep, and keep a lot of covers handy year-round. But I could not warm up.

At some point Thursday morning my husband noticed I wasn’t making sense when he asked if I wanted anything to eat or drink. I was somnolent, very hard to rouse. I have no memory of this.

He told me he called my primary care physician and gastroenterologist. It was only a few days later that I remembered anything at all about having been at the GI’s. Leaving the house, I walked right past a huge display of flowers that had arrived that morning from my brother: I had no memory of them when my husband mentioned them later.

I have a vague memory of either getting into or out of the car at the doctor’s, of looking up and seeing my daughter had joined us in the consulting room, and of sitting in the room (I guess that I wasn’t lying down because they didn’t want me to sleep). I’m told that the physician’s assistant offered to send us along with a prescription for Lactolose, a strong laxative which I’ll discuss in the next post, but since my husband and daughter wouldn’t have known what to do if I didn’t respond to this drug or what to expect or danger signs, they—I believe quite rightly—chose to take me down the street to the ER.

I have no memory of getting there or of the usual procedures (and I’ve been in the ER enough to know), like signing in, waiting in the first waiting room area, going to the triage nurse, and having vitals taken. I do remember being in the second waiting area, and I guess all the action had woken me up enough so that I realized what was happening.

Hepatic encephalopathy is the complication of a TIPs I feared the most because it involves your ability to think and remember. At its worst, it can lead to coma, sometimes reversible, sometimes not.

To the other people in the waiting room, I must have looked fine – no ice packs, bandages, vomit bag, etc. But each moment that passed I believed I was closer to losing my mind. At some point I must have asked for a DNR (Do Not Resuscitate) bracelet because much later I noticed I was wearing a purple bracelet I’d never seen before.

At some point—an hour? two?—I was taken back into the examining area.

After a while, I said to my husband, aren’t they going to do anything? They haven’t even started an IV. They always start IVs. He said, look at your hand.

I looked down, and saw I had an IV. I in fact had what I’ll call a double-barreled I on the back of my hand—a painful place for a stick—and I am one of those people with small veins that roll, etc.

Was I too somnolent to feel an IV going in? Did I feel it but was unable to remember having felt it? Was I, in other words, unable to form new memories?

Then came the questions.

• What is your phone number? I hadn’t a clue.
• What is your birthday? I know this, I do, I know this. I couldn’t find it.
• What month is it? 12?
• Try again. 6?

How strange. I have this very vivid memory of not knowing these answers.

(Later it occurred to me that the oddness of my response – 12, 6 – rather than the names of the months was because I was still searching for my birthday (12/26) and could not make the leap to the new question. My phone number I simply had to relearn, and it took til Sunday morning before I got it right routinely.)

The rest of Thursday is vague to me. I don’t know if I had anything to eat that day. I can’t tell you if it was day or night when I got into a room. This might not seem unusual, except that here going from the ER to the in-patient hospital requires an ambulance ride across a street. But I remember being able to get from the gurney to my bed without help.

Then it was Friday. I remember very little of it until the evening. Then it was time to start trying to figure out what had happened.

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.

About Mental Health Emergency Services for Teens

While this post may seem to have most relevance for the parents of North Alabama, I think, sadly, the subject is hardly unique to this area, state, or region of the US.

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.

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.

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.

“Drug” Education Failed. Let’s Try “Will Kill” Instead.

Is there anyone who disputes that forty years and millions of dollars later, “drug” education is a failure? Had it succeeded the first decade, or the second, third, etc. it would no longer be needed, for then there would be little or no demand, and thus little or no supply.

I think the reason “drug” education failed is sloppy word choice, which is indicative of sloppy thinking. When elementary kids would come up to me with their red ribbons to show my commitment to being drug-free, I accepted them, passively, since I am not snarky to kids. But through my head went, if it weren’t for drugs I wouldn’t be here. I’ve already taken drugs today, drugs that will, with luck, allow me to continue being here.

How stupid is it to think that your words will have the effect you want when they are misleading. “Campaign for a Drug-Free America,” “Don’t Do Drugs,” “War on Drugs”: give me a break — do you really want to eliminate antibiotics, general and local anesthesias, etc. etc. etc. from our world? I don’t.

Watching Dying: New BBC Documentaries, PBS Frontline

I came across this a few minutes ago, purely by accident. Tonight, May 12, the BBC, as part of its documentary series Inside the Human Body is going to show the death from cancer of an elderly man who agreed to be filmed over the last two months of his life in hopes that his experience “would help others.”

The program already is sparking controversy, but the BBC has responded that

‘Death is an important part of the human experience, and showing Gerald’s death is integral to understanding what happens to the body when it is no longer able to function properly.

‘The BBC does not shy away from difficult subjects like this, but presents them in a sensitive and appropriate manner.’

The makers of Inside the Human Body were put in touch with the cancer sufferer by a hospice in Pembury, Kent, which said it was ‘important that life-threatening illness and death is discussed and understood more in our society’.

The Daily Mail reports that

the death scene lasts for less than five minutes and the voiceover carefully explains from a scientific perspective what is happening to Gerald’s body as he approaches death.

I also learned that this summer the BBC will be broadcasting a show featuring Sir Terry Pratchett, the novelist best known for his Discworld series, investigating what is involved in assisted suicide. Again, according to the Daily Mail,

The novelist, who has Alzheimer’s, will be seen at the bedside of a 71-year-old motor neurone disease sufferer until he succumbs to the cocktail of drugs he has taken to end his life at the Swiss clinic.

The BBC’s press release notes that

Terry has often spoken of the fact that he may choose a medically assisted death when his condition progresses, so his priority was to look at what this decision would really mean. What would it feel like to make the final decision to die? What would it feel like to visit Dignitas? What would it be like to be present when the moment of death came?

Terry Pratchett: Choosing To Die looks at all of these issues in some detail, but in no way does he wave a one-sided flag for assisted death.

I’m not sure what to make of the Daily Mail’s last comment:

The programme, called Terry Pratchett: Choosing to Die, will be the first time terrestrial television has shown a death by suicide.

since I don’t know what is meant by “terrestrial television.” I do know that an assisted suicide has been shown on TV before, in PBS’s Frontline 2007 broadcast of The Suicide Tourist, which showed the journey by a 59-year-old man, Chris Ewert, suffering from rapidly progressing ALS (Lou Gehring’s disease) to Switzerland where he legally commits suicide in an apartment maintained by Dignitas, at the time, and possibly still, “the only organization in Switzerland that will help foreigners.”And yes, you do see Ewert drink the cocktail and the Dignitas assistant tell his wife, who has been present during the entire process, that her husband “is gone.”

The whole program is available to watch online at Frontline. There is also an extensive list of links on the topic of assisted suicide at the site.