Havealittletalk's Blog

January 4, 2014

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?

1. You can hope that the situation at Decatur Morgan Hospital West Campus (formerly Decatur General Behavior Medicine Center) over in Morgan County where Huntsville Hospital ships its psychiatric cases that come in through the Women’s and Children’s ER (and where those ordered by the Courts for psych evaluation land) has improved. See my previous post.

Chances are good that your teen will be returned to you alive, and that is what matters most. Maybe he or she will be scared sane.

But what worries me about a teen’s first encounter with psychiatric treatment being negative is that he will never admit to being in need of help again and if he (or more likely when) he becomes suicidal again, he will make sure to choose a technique that will keep him out of such a place, one where the severely depressed are mixed in with the seriously aggressive and cut off from family and friends in a facility that is run like a detention center with little medical oversight.

2. Leave town. This is the best thing you can do, I think. First, immediately. Later, permanently.

Before you get into a crisis, check out your options. Start with teaching hospitals.

If you are in Huntsville, Alabama, you have at least two options within 100 miles (about 90 minutes): Go first to these hospitals’ ER.

How does going to a real psychiatric hospital compare to going to a freestanding quasi-detention center?

At Vanderbilt’s program,

  • You can get immediate referrals and prompt evaluations for neurological assessments. There’s a lot of similarities in symptoms of conditions like Post Traumatic Stress Disorder (PTSD) and Post-Concussive Syndrome. If your teen’s suicidality followed a violent attack, you need to consider such possibilities.
  • Your child sees a psychiatrist daily. You visit with the psychiatrist at the beginning and end of the child’s stay. The psychiatrist returns your phone calls. In other words, you have actual contact with the person treating your child.
  • You can visit your child every day, on the ward, in his or her room or common area if the roommate’s folks are there, for an hour in the evening, and two hours (one morning, one afternoon) on weekends. You see where your child is living. You meet the nurses and the techs.
  • You can have telephone contact with your child whenever you want. Or she/he can ask to call you.
  • A social worker is also involved to support the psychiatrist and to help the families, especially with aftercare. You leave with an appointment set up for continuing psychiatric, neurological, and/or therapeutic care that is timely. (In contrast, expect about a month’s delay between release and your child’s first follow-up, if you have to deal with a place like Decatur Morgan Hospital West Campus.)
  • Your child may not like separation from cell phone and social media (or maybe he/she will: no pressure for a while) and confinement, but chances are your child won’t emerge determined never again to seek psychiatric help.

3. Don’t assume, however, that if you don’t live near a teaching hospital, you are sunk.

Consider, for example, Asheville, NC. Its Mission Hospital has inpatient adolescent psychiatric services.

  • Huntsville’s population is 182,956 people; the metro population of the five North Alabama counties making up its Combined Statistical Area is 430,734.
  • Asheville has about a 100,000 fewer people:  83,393.  Asheville’s metro area includes 4 counties; population, 424,858.

A question of priorities, I suppose.

 

Getting a suicidal person of any age a week’s stay in a psych hospital isn’t going to fix him or her forever.

The best you can hope for is that your child is

  • safe long enough for the suicidal urge to pass
  • learns some coping skills
  • gains some insight into why he/she considered dying
  • isn’t scared away from seeking help again
  • gets very timely appointments with professional who will provide the support needed.

I got into this subject following the suicide of Christian Adamek (see previous post). His father is following through with his commitment to honoring his son’s life by promoting a conversation about means of improving mental health care, including “immediate access to care in the form of assessment, diagnosis, treatment and monitoring” by establishing a nonprofit organization, Little Orange Fish. There’s not much on the website yet, but there is a way to sign up for updates.

I look forward to the discussions Little Orange Fish will facilitate.

 

October 22, 2013

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.

Daniel Adamek, the father of the 15-year-old boy who streaked at a football game in late September and less than a week later committed suicide, held a press conference today in Huntsville, Alabama, to say that focusing on the events immediately preceding his son Christian’s death (likely “facing expulsion” and “legal complications,” as his principal announced on TV the night before the boy acted) “is a distraction from addressing the real problems.” He explained:

“We had been struggling for some time to get Christian through the pain of depression. The real issue here is why we could’t get the medical help he needed despite following every avenue we could.”

In his heartrending address Daniel Adamek said too that

“I’m asking that we do NOT make this story about any specific events or Christian’s particular challenges because those were his and we can’t fix any of that now.”

He’d like, I think, for Christian’s experience — and his family’s — not to be one that is repeated again and again. Here is a father who tried all the ways he knew to help his child, and the help he needed was just not there.

Daniel Adamek didn’t elaborate on his pursuit of help; to have addressed a press conference and answered questions must have taken enormous strength. To go through the whole futile search up on the podium under the lights — no.

So I don’t know the details of his journey, but I can tell you about what well could be a similar path as the Adameks considered or took.

Imagine that you live in Huntsville, AL, a fairly good sized American city, and the largest within a 100 mile radius.

ImageYour teen is very depressed, is talking seriously about killing himself, or perhaps you have even interrupted an attempt. This is an emergency, right? What would you do?

You couldn’t be faulted for taking your child to the Emergency Room of your local hospital, and the only hospital of any size for 100 miles in any direction, Huntsville Hospital for Women and Children.

You wouldn’t be unreasonable if you expected a Children’s Hospital to have a pediatric or an adolescent psychiatric ward. You would probably expect for there to be a pediatric or adolescent psychiatrist on call for the ER, too.

And you would be wrong and wrong again.

There is not a single psychiatric bed for a minor in Huntsville Hospital.

There is no pediatric or adolescent psychiatrist on staff.

So what happens?

A social worker is called in or a low-level intake counselor for Decatur Morgan Hospital West Campus (formerly Decatur General Behavior Medicine Center) over in Morgan county, Note, this is not a hospital. This is not even attached to a hospital, and is some 15 minutes away from the main hospital in Decatur.

There is not an MD on duty 24/7. The psychiatrist is a part-timer.

If your child is over 14 or 15, he has to voluntarily commit himself (unless he lands in the ER following a suicide attempt. Then he has the option of signing himself in, but if he doesn’t comply, an involuntary commitment will be sought by the hospital). Interestingly, although it is the teen who signs himself in as a voluntary patient, he can’t summon an administrator and sign himself out (and if he asks to, this will be a black mark on his chart).

If you decide to take the ER’s advice and have your child delivered to Decatur (and he will be transported by ambulance) sight unseen, what can you then expect?

He will be in a secure ward as long as your insurance benefits hold out.

You won’t see him or hear from him until after a family meeting with a social worker, so try not to have a crisis on a Friday.

Once you turn him over to the intake crew, you’re done. You won’t see his room or meet the nurses or techs directly involved in his care.

You’ll talk by phone with the psychiatrist for a few minutes once, maybe twice, but you will never meet him.

Twice a week you will be able to visit for an hour.

If he doesn’t break any rules, he will be able to call you for 5 minutes each night from the nursing station where there is no privacy.

When your child is released, you can expect perhaps a 3-week delay until his first follow-up appointment with a psychiatrist, assuming that the staff has managed to find one taking new patients on your insurance.

Adolescent psychiatrists are thin on the ground in Huntsville.

Later when your depressed child gets home, you will hear that there were some other kids in the place who were also depressed, but there will also have been a number there with serious anger management issues, many under court order. Your child will be able to describe for you various take-down techniques. You will hear about under-supervised, poorly trained techs who are in charge during the evenings and weekends.

But, yes, your child will be released to you alive. What will happen next is anyone’s guess. Maybe the oppressiveness will have a Scared Sane effect. Maybe your teen will come out vowing that the next time he considers suicide he’ll keep his plans well hidden, or the next time he attempts suicide, he will make damn sure he succeeds so he doesn’t end up in what amounts to little more than a detention center.

I think what Daniel Adamek wants us to know is that we don’t know what we don’t know.

After all, who among us gives thought to preparing ourselves for where we will go and what to expect if our child has a mental health crisis?

 

October 10, 2013

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.

July 22, 2013

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.

May 18, 2013

Cameron’s Erosion Erupts (Again): Bleed the Eighth

Back when I first decided to write about having primary biliary cirrhosis in November 2009, I never figured that this would become my bloody blog. I have neglected the blog for months because if I am going to follow through with my plan to write an account of living with this auto-immune illness, then I have to, once again, post about another bleed. Each has its own special moments, however, and here I have two warnings for you, and a comment from my gastroenterologist.

Now, technically, this isn’t about a varices bleed caused by portal hypertension caused by cirrhosis of the liver caused by my immune system deciding to destroy the ducts that regulate bile flow, which might be good news for my sister PBC-ers (almost all of us are females).

Once again, as in bleed 7, the culprit was my Cameron’s Erosion (or Lesions), an ulcer “in the hiatal sac of patients with hiatal hernia,” which is how Wiipedia’s 2-line article describes the thing. You know you have a rare condition when Wikipedia has next to nothing. I described what I learned about Cameron’s after bleed 7.

The link to PBC is that because my liver is compromised by the disease, it is too dangerous to repair the hiatal hernia.

I’m getting better at identifying the onset of these bleeds, anyway. This time I even drove myself to the hospital. Signs were clear: black BM and the taste of iron in my mouth.

Now for the three things that made this bleed memorable, and some advice.

1. Do not let a doctor put in an IV. There is some incompatibility between all the things that I might need intravenously during a bleed, and so I end up with IVs in both arms. I had a great nurse in the ER who inserted the first IV as painlessly as I can remember. Then this doctor or resident drifted in. I could tell he hadn’t been on the job long — and thought he was God’s gift to the world — because he was wearing a V-neck scrub top that let me see way too much of his curly chest hair way too close up. He wanted a little practice with IVs, I guess. So he tried to start the second line. And failed, miserably. Blood spurting and me doing the vasovagal response — that is, fainting. Finally the nurse guided the doctor’s every move and the second IV was inserted.

She was a great nurse, and I asked her later, how do you stand that — doctors coming in and thinking they can do all you can, and you having to deal with the aftermath. Diplomatically, professionally, she responded that at least that doctor will think twice before he gets snippy when a nurse has trouble with an IV.

2. It hurts like hell to have your stomach pumped. And it’s worse when there’s no reason to do this. My bleeds sometimes have two parts: black stool and vomiting. The vomiting always happens, but when both occur, usually comes an hour or two later. This time, I got to the ER before I vomited. All that I needed was time, but for reasons best known to himself (and that itself is a problem), my ER doctor decided that instead of letting things take their course, he would pump the blood from my stomach.

Never again. I would have been better off sitting outside the doors of the ER until I threw up.

I always imagined stomach pumping would involve a tube down the throat, turning on the pump, and whoosh, all done.

It isn’t like that.

This is what it is like to have your stomach pumped: A tube is inserted up your nose and down your throat. If the first nostril tried gives the nurses trouble, then they start over with the second. They keep giving you water to drink so you swallow, and swallow down the tube. Maybe it was just me, maybe the tube was just lodged against a nerve, but it hurt like hell the entire time the tube was up my nose and down my throat. 

And the entire time isn’t a matter of minutes. It’s a matter of hours. The pumping is slow and not constant. You watch the content of your stomach (in my case, red blood followed by black) slowly proceed down this thin tube. Sometimes it starts flowing backwards. 

I supposed most who OD and have their stomachs pumped are out of it. I can’t imagine that anyone who has had it done would risk OD’ing twice. I was not out of it. Other than a local anesthetic sprayed in my throat, I had no recourse but to lie there in pain between 1 and 5:30 in the morning and watch my blow flow out of my stomach.

I talked to my floor nurses about this, and each said, you always have the right to refuse a procedure. And refuse I shall. 

3. Don’t go out during lightening storms. This was her advice when I asked my gastroenterologist how often people have both PBC varcies and Cameron’s lesions. First she suggested buying lottery tickets, and then backtracked, since having bad luck doesn’t mean having good luck too. (I spent an hour at the Harrahs in Cherokee last week and never once was ahead.)

Actually, her advice misses the mark. Not going out during lightening storms is an action I can take to avoid without fail being one of the rare people struck down.

But there is no way I can avoid without fail the next bleed.

 

January 31, 2013

My PBC: Collateral Damage

Filed under: Uncategorized — havealittletalk @ 10:55 pm
Tags: , , ,

I’ve described the gory consequence of my primary biliary cirrhosis: gastrointestinal bleeds. There’s also collateral damage, for want of a better term, that isn’t so dramatic and isn’t life-threatening, but like the disease itself, slowly does lasting harm.

Primary biliary cirrhosis [PBC] is an autoimmune illness in which the body’s own immune system destroys the bile ducts of the liver, leading to cirrhosis and liver failure. Most research suggests the disease’s progress can be slowed by years, even decades, in patients diagnosed early who respond to medications that thin the bile.

I started out as one of these lucky ones. I was diagnosed in December 2006, responded immediately to ursidol, and my liver chemistry values largely returned to normal.

I ignored my disease 364 days a year. On the 365th, I went to the Liver Center at University of Alabama-Birmingham. I didn’t even tell most people about it. It seemed abstract, really: just a matter of numbers.

Some of the collateral damage is to other parts of my body. My hepatologist tells me that his patients frequently complain that their teeth are crumbling. My salivary glands don’t work properly.  My mouth is like Afghanistan: dry, bloody, and hopeless. You know that question mark shaped thing that dentists hook over your teeth to suction fluid while they work? They don’t need to use one with me.

But then the bleeds started, with the first and worst in early August 2010, followed by another a year later, a third in early March 2012, and, since October 5, 2012, four more. Even after the first and second bleeds I could convince myself that with more frequent endoscopies, these could be prevented.

And then came this fall.

I have been rather spectacularly unlucky.

I should make it clear especially to others with PBC that my experience is not typical. The bleeds are like a side effect of PBC. Some people have them, and many don’t. My hepatologist says it is very unusual for someone to have as many bleeds as I have had so close together.

When you have four hospitalizations in 16 weeks, it’s hard to ignore that things are not going too well — and you can’t keep the problem to yourself. People start worrying.

And the soul-lacerating collateral damage mounts.

Because of this illness, I am not as good of a mother, wife, daughter, friend, sister, aunt, neighbor, or even pet owner as I like to think I otherwise would be (this was going to be the year I kept up with the collie’s coat).

I don’t have the energy that others do. After bleed 7, I had three transfusions, but still I am anemic.

I need to visit my 83-year-old mom, but I’m scared to fly. The thing about these bleeds is that there are only two warnings I have experienced: fatigue and loss of appetite in the 12 hours or so before one starts. But lots of things can cause that. The bleeds are stoppable if IV fluids and drugs can be administered in a timely fashion, but what would happen if I started throwing up blood on a plane? Moreover, how much use would I be to my mom if I began a bleed while visiting? I drove a half day away to see my son for his 23rd birthday. He spent it visiting me in the hospital.

My children were 14 and 20 the first time. None of us knew what was happening. They saw it all, as did my husband: the blood, the shock, the ambulance sitting in the street for 15 minutes before even starting for the hospital.

I had four transfusions that time and rebounded quickly. We thought it was a one-off. For a year it seemed it would be.

But not now.

The thing is, the bleeds aren’t painful. Gross but not painful. The worst part is the IV sticks. 

What is painful, though, is knowing that what is happening to me is taking a toll on those I love — and there isn’t a thing I can do about it.

January 26, 2013

PBC Bleed 7. The Vesuvius Within Me. Crashing in the Same Car.

Good thing I finally got around this month to describing November’s bleeds 5 and 6 in this continuing realtime account of me and my PBC (primary biliary cirrhosis) because now it’s already time to move along to bleed 7.

This was a rather dramatic one, occurring in the wee hours of January 18, 2013. My hemoglobin [hgb] dropped to a personal worst of 6.1, I landed in the ICU and then on the cardiology floor, and required 3 transfusions. A couple of days ago my hgb was 10.5, mildly anemic, but I feel great.

Why the ICU and cardio unit? Because when your hemoglobin drops that low (normal for post-menopausal women = 11.7 to  13.8), it means none of your organs — including your heart — are getting enough oxygen.

What went right this time was that the Asheville ER got a gastroenterologist in to perform an endoscopy immediately, while I was still actively bleeding. Except for my first bleed, in Huntsville the doctors waited 20 hours or more to ‘scope, after drugs and IV fluids had stopped the bleeding.

You can’t be sure of the source of the bleed if you don’t see the bleed.

The Asheville GI theorized what I had this time around was a Cameron’s Erosion. This is erosion in the stomach near the diaphragmatic haitus which is a hole where the esophagus passes into the stomach. The junction should be below the diaphragm, but if you have a hiatal hernia, as I do, then it is above the diaphragm. Usually, hiatal hernias cause no bother other than indigestion. But I have other things going on as a result of the PBC, namely protal hypertension and gastric and esophageal varices. (If you search “cameron’s erosions” + “portal hypertension” + pbc, Google comes up with 75 results, which in the Googleverse is close to zero.)

Now as it happened, I had an endoscopy and visit planned with my hepatologist, Dr. Brendan McGuire, at University of Alabama-Birmingham’s Liver Center for January 22 and 23. So immediately after leaving the hospital on the 21st, we headed south.

Dr. McGuire scoped me Tuesday morning and reported he agreed with the Asheville doctors. He described the area as not unlike a scrape on a kid’s knee that scabs over, but before it gets a chance to heal completely, keeps getting banged up. He didn’t see the site of my first bleed until a few weeks had passed but thinks this one was in its vicinity if not the same place.

So it could be like I keep crashing in the same car, having the same bleed over and again. Since I wasn’t scoped during bleeds 2 through 6, we’ll never know.

Why not fix the hiatal hernia? Too risky: its position, the sites of the erosion and varices, the amount of scar tissue, the thinness of the veins — lots of reasons.

What can be done: double the dose of beta blockers I’m taking to slow heartbeat and of antacids to reduce stomach erosion. And hope that the Vesuvius within me remains dormant.

And what about my primary biliary cirrhosis? I’m doing just fine there, holding fairly stable. It could be years and years before it is bad enough to warrant a transplant. There is something called a MELD score. Normal people’s is zero. Those near dead of liver failure have a score of 40. I’m at 8. Bleeds don’t factor in.

So all I have to do is hope I don’t erupt.

But what we need now is a little relief from the dreariness of reading about me going on about vomiting blood.

I suggest a segue to youtube to view some loveliness: David Bowie singing “Always Crashing in the Same Car.”

You can choose between this one with a particularly happy Bowie, or the GQ Awards show where Bowie wore sandals with socks, or this with a sassy Bowie around 3:18. Or all and more (like here, where he isn’t playing the guitar and seems not to know what to do with his arms).

—————–

PS: Although it doesn’t have much about PBC, this site has a cool diagram of possible diagnoses related to liver trouble.

January 11, 2013

PBC, Bleeding Varices. Bleeds 5 and 5.5. Or 6.

Yes, it has been months since I last posted, and, yes, my next-to-last post was on this same topic (Primary Biliary Cirrhosis [PBC], Portal Hypertension, My Perfect Endoscopy Results and My Fourth Bleed) in my continuing series of what my experience with PBC is like. I’m beginning to understand why there aren’t so many real-time chronicles of progressively worsening illnesses.

You may recall that back in early October 2012, I had a routine exploratory endoscopy with perfect results, followed a few days later by a bleed I was told was from a tear in the esophagus which was patched up, and no other problems noted.

Bleed 5.

November 6 I drove from Asheville, NC back to Huntsville, AL to spend the 8th with my son on his 23rd birthday. Before dawn on the 8th I started throwing up and defecating black blood. I really, really did not want to go to the hospital. I didn’t want to ruin my son’s birthday. I had so looked forward to this. But even less did I want him to discover me bled out, so I told him, and he insisted I go to the hospital. We ended up visiting in a room of the same hospital where we were 23 years previously, to the day.

Next day, the 9th, another endoscopy. And behold, the GI discovers two varices needing banding. He also reports that he saw no evidence of the tear I was told was the cause of my October 5 bleed, with repeated emphasis on the word tear. Huntsville GI added he wasn’t impressed with the Asheville GI’s work and that I had a good deal of scar tissue. Because my hemoglobin creeps up to 9 (12 is normal lower limit), I’m not transfused and am released that day.

Bleed 5.5 or 6.

Between November 8 and November 20, I felt worse and worse, like I was practicing being dead. I didn’t read or write or sleep, just stared out the window.

I was with my daughter at her doctor’s on the 20th when I started throwing up blood. Again. This time was a bit different; t some red mixed in there with the black, not quite as much as in past bleeds, but enough so I am on the verge of losing consciousness.

It was two days before Thanksgiving, and I had really, really been looking forward to spending it with my family and new friends.

The GI on call from the practice I visited to schedule October’s exploratory endoscopy paid me a visit in the ER. This made the sixth I’d seen from that practice. I never will believe that I had a spontaneous tear after the exploratory and not a nick, but GI #6 is simply preposterous. He claims that with PBC patients, low hemoglobin, as low as 8, is preferable to the normal 12-14 because less blood means less likelihood of portal hypertension. How stupid does this man think I am? He’s the doctor and I am not so I refrained from telling him his job or the role of oxygenated blood in maintaining life. But man, why don’t we just take a few pints of your blood, drop you to 8, and then let’s discuss quality of life.

Fortunately, a new GI did the next day’s endoscopy. She reported that I didn’t have varices that bled. Instead, the bleeding was caused by ulcerations around the two bands placed by the Huntsville GI (who was, you’ll recall, unimpressed by the Asheville group’s work).

So was this Bleed 5.5 or Bleed 6? It wasn’t a varices bleed. But then again, neither was Bleed 4 (the nick bleed).

There was a good thing about Bleed 5.5 or 6. It got me some blood. My hemoglobin had dipped to 6.7, an all-time personal worst for me.

I thought after the doctor visited Thanksgiving morning that I would be able to go home when the second transfusion ended. But a nurse said it would take 12 hours to wean me off the IV which was delivering a drug to help stop internal bleeding.

Despair. In comes Thanksgiving Day hospital turkey.

However, when the hospitalist came around, she said since this was not a varices bleed, I didn’t need to be on that drug, and so didn’t need to be weaned from it. I could leave.

Joy.

No one can give me an answer beyond bad luck for how in hell two varices burst on November 8 when on October 2 and 5, there were no signs of developing varices.

I’m going to Birmingham to see my hepatologist at UAB in 10 days. It is worth it to me to drive 6 hours for an exploratory endoscopy with someone I trust.

Image

Thanksgiving 2012. My left arm. The other looked about the same.

October 19, 2012

66 Reasons to be Grateful Philip Pullman was Born This Day

Filed under: Novels — havealittletalk @ 1:31 pm
  1. dæmons
  2. Lyra
  3. Pantalaimon
  4. integrity
  5. Will
  6. witches
  7. New Cut Gang
  8. armored bears
  9. kindness
  10. Svalbard
  11. balloons
  12. compassion
  13. Cittàgazze
  14. Serafina Pekkala
  15. brilliance
  16. Farder Coram
  17. sky iron
  18. Sarch Lockhart
  19. windows
  20. lantern slides
  21. Chulak and Hamlet
  22. the alethiometer
  23. Sebastian Makepeace
  24. Jordan College
  25. Frederick Garland
  26. Clockwork
  27. Lee Scoresby
  28. Iorek Byrnison
  29. trepanning
  30. Spring-Heeled Jack
  31. Roger
  32. zepplins
  33. Mary Malone
  34. the subtle knife
  35. courage
  36. Stanislaus Grumman/John Parry
  37. harpies
  38. Lord Asriel
  39. gyptians
  40. Scarecrow & Jack
  41. woodcuts
  42. angels
  43. Jim
  44. mulefa
  45. Dust
  46. Count Karlstein
  47. Marisa Coulter
  48. aurora borealis
  49. Ruta Skadi
  50. Mossycoat
  51. Oxford
  52. Daniel Goldberg
  53. the Gallivespians
  54. Hester
  55. Glockenheim
  56. Balthamos
  57. experimental theology
  58. Lord Boreal/Sir Charles Latrom
  59. righteousness
  60. Lila
  61. I Was a Rat!
  62. many worlds/Barnard-Stokes theory
  63. Botanic Garden
  64. Xaphania
  65. John Faa
  66. stories

October 8, 2012

Primary Biliary Cirrhosis, Portal Hypertension, My Perfect Endoscopy Results and My Fourth Bleed

This post updates my last one, Primary Biliary Cirrhosis, Portal Hypertension, and the Frustration of Knowing There’s No Way of Knowing What I Need to Know, in which I discussed what a relief it was going to be to have an exploratory endoscopy in which either I would discover that I had no varices on the verge of bursting and causing a life-threatening bleed, or if I did have varices, they would be banded and so I would not be at risk — for the time being — of a bleed.

Well, here’s what happened. (Fair warning: This blog isn’t for the weak-stomached today.)

Tuesday morning: endoscopy. Great news! No varices! The GI suggested that maybe I could go a year before the next scope.

Wednesday: Normal life, until evening, when it was a struggle to stay focused enough to watch the debates.

Thursday: I felt really poorly, headache, no energy, unable to focus or think or read, light-headedness. I thought, Gee, it’s a good thing I had the endoscopy Tuesday or else I’d be sure I was starting a bleed.

Friday, 1 am: Urgent need to use the toilet. Expelled globs of old digested black blood, then started throwing up black blood. Simultaneously. Really disgusting. Yelled for help, husband came, call into 911, off I go in the ambulance.

Now, this bleed wasn’t as bad as bleeds one, two, and three because my blood pressure never dropped low enough so that I lost consciousness. I was even able to talk the EMT out of starting an IV in my rolling, uncooperative veins en route to the hospital along winding and bumpy roads.

So what happened? How did I manage to go from A+ to F in the esophageal health department?

Next day the founder and boss of the GI practice did a much slower endoscopy. He found a tear in the esophagus and repaired it with two clips.  He wants to call it a Mallory-Weiss tear, which can follow extreme retching. But the only retching I did was sudden and swift vomiting of blood. In fact, no retching was involved. More like spouting.

He can call it what he wants. There’s no way of ever knowing what caused this tear. But the hospitalist, the nurses, anyone without a vested interest in it being a Mallory-Weiss, is likely to agree with me: I got nicked during the Tuesday morning endoscopy.

It happens. I’m not irate. I know that endoscopy is an invasive procedure and that there are risks. According to the Mayo Clinic, tears happen in “an estimated 3 to 5 of every 10,000 diagnostic upper endoscopies.” It is a good thing that I was conscious, coherent, and creditable, and returned to the same hospital where the exploratory endoscopy had been done. Without a history to work up a diagnosis, this could have been as bad as a burst varices bleed. The mortality rate is 20% when the esophagus is already compromised and because

the diversity of clinical symptoms and signs combined with a lack of individual experience [among doctors] regarding this particular condition may impede rapid identification of this potentially hazardous situation. Accordingly, delayed diagnostic work-up may hinder timely and appropriate treatment with a negative effect on patient outcome.

Well, that’s not real encouraging, is it?

So now what? What do I do in six months’ time?

It is, you see, a classic damned if you do and damned if you don’t, between a rock and a hard place, etc. situation: in trying to eliminate the risk of a burst varices bleed by exploratory endoscopy, I incur the risk of a bleed from the endoscopy itself.

Well, I’ll tell you. I’ll have the scope. But I’ll either have it with the hepatologist at UAB even though that means a five or six hour trip, or maybe I would have it here — but only if the bossman himself does it.

Someone who can do the math can combine these odds, just for fun. Incidence of having PBC in the first place: 2.7/100,00. Incidence of tears in upper endoscopies: 3-5/10,000. Incidence of having PBC and having  a tear following an endoscopy = ???

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