Who Knew a Photographer from Getty Images Went to the Moon?

“It is unlawful to falsely claim copyright or other rights in NASA material.” — from the NASA Media Usage Guidelines

So how does Getty Images get away with licensing pictures from the moon? Wouldn’t “other rights”include licensing? Maybe the judge reviewing the Carol M. Highsmith case can cast some light on this.

Go to the search bar on the Getty Images  opening page, and enter “Apollo 11.” Here are a few results (“Apollo 11” yields 81 pages):

2016-10-282016-10-28-12016-10-28-3

Now go to Google and search for “Apollo 11 Images.” Click through any of the image results that specify NASA.gov as the domain, and it won’t be long before you will find your way to the Apollo Archive of NASA,  where there are 724 images for Apollo 11 alone.

All three of these pictures, and many more that Getty is trying to license for use at $575.00 a piece, are available to download free at the Apollo Archive.  

The astronaut is Aldrin. Control number at NASA is AS11-40-5903.

The bootprint’s NASA ID  is AS11-40-5877  or AS11-40-5878.

The moon (“view of full lunar disc during return trip”) NASA ID is AS11-44-6667. 

Cost to download these images from NASA: = $0.00.

Gettying: How Getty Images Charges Users for What They Already Own

A few weeks ago, I posted “The Audacity of Getty Images: Exploiting Carol Highsmith, America’s Photographer” about the way Getty Images took from the Library of Congress thousands of images placed in the public domain by “America’s photographer” Carol Highsmith. Her intention was that Americans could use them without paying a cent. Getty downloaded these images from the Library and then uploaded them on its own site, Getty Images, and charged licensing fees for using these pictures, which belong to them no more than they belong to me — or you.

To add insult to injury, Getty Images listed itself/Carol Highsmith as these works’ creator, which suggests that she was in cahoots with them, notwithstanding that Highsmith first learned of this scam when she received a threatening letter for not paying licensing fees for the privilege of using her own pictures on her own website.

Yes, the mind boggles.

Then I wondered: if Getty Images is pretending that they have the right to demand payment for the use of  Highsmith’s photos, could they be pulling the same scam with other images in the public domain?

It took less than an hour to establish that Gettying extends beyond the Highsmith experience. Consider these 2 pictures of ships. What’s the difference? Unless you want to place it in an advertisement, using the first image is free — no licensing, no permissions.

2016-10-27 (3).png2016-10-27-6In contrast, this photo, the one with “gettyimages/ US Navy” will cost you $575 to use.

Even the caption at Getty is plagiarized — stolen — from the US Navy.

Compare http://www.gettyimages.com/license/612905348 to the screenshot above from the Navy: 

“Ships Huddle At Key West To Offer Aid As Hurricane Matthew Approaches

Credit: U.S. Navy / Handout
Editorial #: 612905348
Collection: Getty Images News

KEY WEST, FL – OCTOBER 5: Nine ships from the Royal Bahamas Defence Force, research vessel Walton Smith and a contract vessel take shelter at Naval Air Station Mole Pier as Hurricane Matthew approaches October 5, 2016 in Key West, Florida. NAS Key West is not currently projected to be in Matthew’s path and as such, stands by to support other services and relief efforts. NAS Key West is a state-of-the-art facility for air-to-air combat fighter aircraft of all military services and provides pierside support to U.S. and foreign naval vessels. (Photo by Cody R. Babin/U.S. Navy via Getty Images)”. 

The US Navy website makes it clear that you need not pay licensing fees: 

Notice: U.S. Navy photographs and digital images on this site are fully released by the U.S. Navy. If used for news and information purposes please credit as “U.S. Navy photo by [photographer’s name].” The use of Navy images for advertisements must be specifically approved by the Navy Office of Information (OI-2) prior to the use. Write to navymedia@navy.mil and include details on your intended usage.

In other words, unless you want to use the picture of the ship at Key West in an advertisement, you are free to do so for free. The idea is that since the military is supported by tax dollars, you have already paid for this picture.

And let’s be clear about this: Mass Communication Specialist 3rd Class Cody R. Babin is not working for Getty Images. He is not paid by them. He works for us. Really, he ought to protest the use of his name by Getty because were he on both their payroll and the Navy’s, he would be double-dipping. Yes, I suppose it is nice of Getty to acknowledge him as the creator of the work — but do you think he will see one thin dime of the $575 licensing fee Getty is charging for — well, for what? 

Next up: Gettying NASA photos and historical images from the Library of Congress.

 

Foyle’s War’s Teeth

Perhaps it was by design, or perhaps not, but the attention to period detail in the crime series Foyle’s War is remarkable and rare in a seemingly simple way: it gets teeth right.

Foyle’s War is a police drama featuring Detective Superintendent Christopher Foyle (Michael Kitchens). Many of the crimes he investigates in Hastings, Sussex during WWII are related to the conditions on the homefront including profiteering and sabotage, but jealousy and madness also provoke ordinary people to behave wickedly. The show premiered in 2002 and ended in 2015 after 28 90-minute episodes. The last episodes following the war find Foyle in London, working for MI5.

Foyle is a quiet, highly principled man. He is compassionate, but he does not suffer fools. He’s a widower with one son, Andrew, serving in the RAF. From the first episode onwards he is accompanied by Samantha Stewart (Sam) as his driver, and in the first five seasons he works with Sgt. Milner, a policeman who lost part of a leg in the war.

There are perhaps a half dozen other characters who appear in more than one episode, but for the most part, the cast is fluid.

Its creator, Anthony Horowitz, has attributed Foyle’s War appeal to the tone of the show. It defies the sentimental nostalgia for the war years, and Horowitz based many of the situations Foyle investigates on historical events. The New York Times acknowledges that Foyle’s War is typically “celebrated for the ‘historical accuracy’ (those are the words always used) achieved by its creator and writer, Anthony Horowitz. . . . The better word is probably scrupulousness — the special texture of the show owes to the faith we feel in Mr. Horowitz’s depiction of the clamped-down, suspicious yet doughty atmosphere of 1940s Britain, and to the trouble and expense to which the production has gone to recreate those times.”

In contrast, consider the criticism of Downton Abbey, which historian A. N. Wilson called a “sanitized fantasy.” Downton may get the place settings right, but “the servants in the program are far too clean,” according to historian Jennifer Newby: “The reality would have been a lot more grubby, I don’t think people realize that the servants stank.”

All I think you need to do to understand why Downton is fantastical and Foyle’s War is not, is to look at the teeth.

Foyle’s teeth

Christopher Foyle (Michael Kitchen) has acceptable, ordinary teeth. There are no obvious flaws, other than a little yellowing. Foyle smiles easily – he has a very expressive face – but his smiles are usually closed.

Samantha (Sam) Stewart (Honeysuckle Weeks). Sam’s mouth seems to change from the start of the series to its final episodes. In the opening episodes, Sam’s teeth seem to be a bit small for her mouth and there appear to be spaces between her teeth.

In the last series, her teeth seem capped and bonded.

Foyle's War
Sam Stewart (driver)

Sgt. Milner has good teeth, as does Foyle’s son, Andrew. The actors who portray them, Anthony Howell and Julian Mark Ovenden, were stage actors. I expect it would have been hard to find experienced actors to play young men in their twenties who have not had good dentistry.

What’s interesting is that the characters who have obvious problems with their teeth represent all social classes. A fisherman, a police commissioner, doctors, army brass, industrialists – all are at risk. Not everyone has bad teeth: a daughter of a wealthy family in Series 1, episode 1, has perfect teeth, as does a burn victim.

Let’s see some examples:

Foyles War
Fisherman in “White Feather”
Foyle's War
Hilda Pierce, MI5. Yellowed teeth.
hospital
Not bad teeth — but not perfect, either
Foyle's War
A doctor’s teeth
"The Funk Hole"
Overlapping teeth
commi-gw
Police Commissioner’s mouth
Series 5, epsiode 2
The brass in “Casualties of War”
anthrax
Serie 4, episode 2. Guard in “Bad Blood”
The Hide; season 7. episode 3
A nanny missing a tooth
1-3
An industrialist’s functional but not dazzling teeth

Some do have good teeth:

 

I don’t know if in the between-the-wars period imperfect teeth could be fixed to look like what is considered normal today, but the family of Downton Abbey would have had the resources for cosmetic dentistry if needed and available. So it isn’t too surprising that Lady Mary, Mrs. Crawley, and the rest of the Granthams have 21st century American teeth.

But it would be very surprising if the servants of the house also have perfect smiles. And they do. This is a huge oversight for a series that claims to be true to its historical period.

daisy
Even scullery maid Daisy has a dazzling smile.
Downton Abbey
Housekeeper Mrs. Hughes’ perfect smile
Downton Abbey
Tenant farmer’s and cook’s healthy mouths. 
Lady's maid Anna's perfect smile
Maid Anna’s teeth are every bit as good as Lady Mary’s.

Let’s face it: imperfect teeth are taboo. There can be no glamour when there’s a crooked tooth.

But there can be no pretense of historical accuracy when the scullery maid has a smile that rivals an aristocrat’s.

 

The Audacity of Getty Images Exploiting Carol Highsmith, America’s Photographer

I first wrote about Carol Highsmith eight years ago, asking “Is Carol M. Highsmith the Most Generous Artist of Our Time?” The answer was yes then and remains so today. Others agree with this valuation, including C. Ford Peatross, director of Architecture, Design and Engineering, Prints and Photographs, Library of Congress, who in 2007 remarked: “The donation of her photographs [The Highsmith (Carol M.) Archive] is one of the greatest acts of generosity in the history of the Library.”

Highsmith has provided the Library of Congress with 31,828 images (as of today, 8/18/16)– and has stipulated that they be placed in the public domain. The Library expects that number will likely approach 100,000.

I was astounded to find an outstanding contemporary photographer’s work could be freely used. No licensing fees are required to use her images, but there should be a credit line, at the least identifying her as the Creator of the work, and preferably using this Credit Line: Library of Congress, Prints & Photographs Division, photograph by Carol M. Highsmith [reproduction number, e.g., LC-USZ62-123456].

After I posted the first time about Highsmith, I learned she was seeking sponsors for an ambitious project, photographing every state so that a record may be had of what America looked like in the first decades of the 21st century.  I’ve been following her progress since she started with Alabama, with sponsorship from philanthropist George F. Landegger.

You can imagine how appalled I was to read about the gross exploitation of Highsmith’s generosity by Getty Images.

In December 2015 Highsmith received notification from Alamay Ltd.’s License Compliance Services (LCS), (on behalf of Getty Images) demanding $120 because she was in breach of Getty’s licensing terms for the content of an image she had used on her website and accusing her of copyright infringement.

The image in question: one of Highsmith’s own and one she placed in the Library of Congress with the stipulation that it be placed in the public domain.

Apparently, Getty Images had been downloading her thousands of images, placing them on its site, and demanding licensing fees, as if Getty owned the images. In other words, they were doing exactly the opposite of Highsmith’s intention, which is to allow free use of her images. Using her images is not the same as owning her images.

Getty had 18,755 of Highsmith’s photos on its site.

The way this all came to light was because Getty “scrapes” the net, looking for uses of its images and checking license fees have been paid.

Eventually the scraper hit Highsmith’s website, and the scheme was exposed. Perhaps if Getty had been careful to credit Highsmith as the photographer, they would have realized sending Highsmith a threatening letter wasn’t a good idea.

Highsmith has filed a $1 billion dollar suit.

Writing for Forbes.com, IP specialist Attorney Bryan Sullivan summarizes the suit:

“against Getty Images targeting the ‘gross misuse’ of 18,755 of Highsmith’s photographs. According to the suit, ‘The defendants [Getty Images] have apparently misappropriated Ms. Highsmith’s generous gift to the American people…. [They] are not only unlawfully charging licensing fees but are falsely and fraudulently holding themselves out as the exclusive copyright owner.’ Highsmith claims that Getty was unlawfully telling users that they would have to buy a copyright license from Getty to use the images. ‘Likewise, nowhere on its website does Getty identify Ms. Highsmith as the copyright owner of the work.’”

Sullivan expects Getty will settle out of court.

A prediction: when she wins, Highsmith’s life will change in one way. She won’t have to seek sponsorships to make it possible for her to work night and day, and this means she’ll have more time to document America.

You can follow Highsmith’s travels on Facebook (Carol M. Highsmith’s America).

Here are four of Highsmith’s photos: “Porter Sculpture Park, Montrose, South Dakota,” “Alpine lakes and forest, Denali National Park, Alaska,” “Monument Valley View, Arizona,” and “July 4th fireworks, Washington, D.C.”Porter Sculpture Park

Alpine lakes and forest, in Denali National Park, Alaska04002rWashington, D.C. July 4th Fireworks

Credits: Library of Congress, Prints & Photographs Division, photographs by Carol M. Highsmith [ LC-DIG-highsm-04547, LC-DIG-highsm-04272, LC-DIG-highsm-04002, LC-DIG-highsm-04460]

ESLD: Holding Steady

This week marks the first anniversary of what I for many months felt was a final descent. In the course of three weeks I had a massive esophageal bleed at my mother’s deathbed, had a transjugular intrahepatic portosystemic shunt (TIPS) installed, and was hospitalized with hepatic encephalopathy.

It took until April 21 for me to stop thinking about dying and to begin to think about living. The evening of the 20th I took a half-dose (by mistake) of a new sleep drug, and I had a paradoxical reaction: I could not sleep at all. I was awake for about 36 hours, and if you have ever experienced that, you know that around about hour 32, things can start to get quite interesting. It was Earth Day, and for three hours in the late afternoon I did nothing but watch the changing colors of the green leaves at the day turned to dusk.

And the next day I felt like my brain‘s reset button had been engaged.

I hit a plateau, I guess. It’s like I had been falling, falling, falling into the abyss but then the fall was interrupted, as if I had landed on an anomaly in the walls of this abyss, some unanticipated protuberance.

This doesn’t mean I can get all together out of the abyss; eventually the protuberance will erode, and the fall resume, but it isn’t happening now.

Now I have some distance from the events of the past year, perhaps I can describe some of those psycho-social aspects of my situation.

For much of last year I felt like all my psychic defenses had been breached. I was attracted by its title to Dion Fortune’s classic Psychic Self-Defense in which she describes the effects of psychic attacks by evil magicians or spirits and means of banishing them or protecting one’s self from further harm. I felt as if I had been attacked by malevolent forces – not bad magic mind you – but a free-floating malevolence.

I think magical thinking is an aspect of illness. I’m even a bit hesitant about saying things are going pretty well for fear that the saying so will make them go wrong.

I remember a particularly bad night when my daughter was hours late getting home (she had gone to the movies; phone off, etc.). I envisioned all the worst as having happened, and that here I was thinking things were pretty bad, and the Universe was going to say, “hey, you think things had been bad before but you have no idea just how bad bad can be” – a little like when you hear some particularly stupid parent tell a child who is crying to quit or else “I’ll give you something to cry about” and is then amazed that the child cries harder still.

Then there is last-time-it is. Is this my last Thanksgiving, my last birthday, my last Christmas? It doesn’t make it seem more precious: it ruins it.

Then there is the any of us could die at any time problem. While this is absolutely true, we don’t really believe it. It is a tralse — some truth, more falsity. Sometimes I feel like responding to that observation with a counter-offering: “in that case, why don’t we switch livers?” But these is no reason to offend folks who are trying to be kind.

I neglected my social life. It was easy to do so. I think I was like the spectre at the feast for much of the year, looking as exhausted and as beat as I felt. Maybe I imagined that people were pulling away from me. Maybe they were. It is an awkward situation.

It didn’t help matters when David Bowie died and the initial reports were that liver cancer was the cause (later clarified as pancreatic that had spread to the liver). Not all people who have liver cancer are cirrhotics, and not all cirrohtics get liver cancer. But cirrhosis is a definite risk factor.

I had decided long ago that if I developed liver cancer, I was not going to fight it (in fact, I think there is little that can be done when someone with ESLD gets liver cancer). I am supposed to go every six months to see if I have developed cancer, but I decided, why bother?

I will tell you why: in March we went on a vacation, and after nine months of doing nothing, I wasn’t prepared for walking a lot. After about a half hour, I would hurt worse and worse as a pain developed on my side and radiated to my back. Of course I decided well damn, I must have cancer.

So I went in for the ultrasound and blood test to see if maybe I was wrong. And I was. But I did have a severe vitamin D deficiency.

Throughout much of the night of my 36 hours of wakefulness I watched Bowie on youtube. He lived until he died. Made an album, wrote a play.

Maybe that contributed to my change of attitude, my finding the plateau. Or maybe it takes 9 months to transition from one existence to another.

I just know that when I finally did sleep, when I awoke, I decided that today I was not going to think about My Death.

And now that has become a habit.

This Thing Called End-Stage Liver Disease

This is another post about primary biliary cholangitis (cirrhosis) [PBC]. In my last post, I used the term End-Stage Liver Disease [ESLD]. It’s a very vague and barely useful designation. 

The good news is that my portal hypertension — once the subject of so many gruesome posts — has been effectively controlled by the Transjugular Intrahepatic Portosystemic Shunt [TIPS] I had installed in July 2015. I haven’t had a bleed since, and an exploratory endoscopy in the fall showed I now have a nice, smooth, pinkish esophagus instead of one with red streaks of varicose veins.

But I haven’t felt better. When I look back on what I could do in 2014 or 2013 and compare it with how I’ve felt the past nine months, I know I am at best holding steady.

So at my last hepatologist appointment, I asked the doctor straight out: Do I have ESLD? He looked taken aback, like this was an acronym that doctors use among themselves not with patients. But he said, yes. And so I said, how much longer do I have? Months? Years? And he said he expected years.

When the bleeds happened, they were potentially life-threatening emergencies. Still, I’d get patched up and leave the hospital the next day. Once they started coming much more often, anemia became a big issue until I got Injectafor iron infusions. I avoided remote locations and long airflights, but as nasty as they were, I now look back on the Bleed years (8/10 to 7/15) as the good old days.

I also haven’t had another bout of hepatic  encephalopathy [HE], one of the scariest ordeals of this whole PBC ghastliness. 

But there is a very low grade (comparatively) of HE, and especially when I am even more fatigued than usual, I can tell that I’m having trouble with short-term memory and learning new things. For example, my husband and I went to Washington DC last month, and I simply could not grasp the subway system. It’s hard to remember what day of the week it is; then again, there is little to distinguish them.

So what is ESLD? It’s odd. You will find a lot of sites with information on End-Stage Liver Disease, but there’s little mention of when Beginning becomes Middle goes to End. I’m not sure there is a Beginning or Middle variety. End-Stage Liver Disease [ELD]  itself is most commonly mentioned in discussing MELD scores; the M refers to Model, and a MELD score is a complicated and flawed scoring system for transplant urgency. The higher the score — and 40 or so seems to be the cap, the worse off you are. I’m at 12.

More often, I’ve found articles using a different terminology. The NY Times offers this simple comparison.

  • Compensated cirrhosis means that the body still functions fairly well despite scarring of the liver. Many people with compensated cirrhosis experience few or no symptoms.

  • Decompensated cirrhosis means that the severe scarring of the liver has damaged and disrupted essential body functions. Patients with decompensated cirrhosis develop many serious and life-threatening symptoms and complications.

But then there’s another approach using four levels.  

Here’s one that does it in three: inflammation, scarring, failure. I wonder if, since the liver is the only major organ that up to a point can regenerate new cells, it would be possible to get out of inflammation back to normal.

But cirrhotic cells are scarred and ruined; they aren’t going to come back to life. And my PBC continues to destroy the bile ducts, and this blockage continues to damage liver cells.

 

 

How PBC Became PBC

I haven’t updated since October of last year. I get comments now and then, asking how things are going. To catch you up if you are new here, I have  been writing about my battles with  Primary Biliary Cirrhosis. While I haven’t had any more esophageal bleeds or episodes of hepatic encephalopathy, this condition continues its destruction.

Although my bilirubin and albumin are worse than they were this time last year, it’s the psycho-social effects that have been devastating this winter. I intend to write more, but shorter, posts on those aspects of End Stage Liver Disease.

But first up is that I no longer have Primary Biliary Cirrhosis, according to the international health community.

I have instead Primary Biliary Cholangitis.

Cholangitis isn’t an altogether accurate a term to take the place of cirrhosis for this illness. I suppose cholangitis  was assumed a good enough switch since in both cholangitis  and primary biliary cirrhosis, the bile ducts are compromised.

But there are some very significant differences. Simple cholangitis is usually caused by a bacterial infection; primary biliary cirrhosis (cholangitis) is an auto-immune condition. The prognosis for simple  cholangitis is good if caught in time. There are a variety of treatments.

Primary Biliary Cirrhosis or Primary Biliary Cholangitis has one drug that may slow the progression of bile duct destruction. It will lead to cirrhosis and end-stage liver disease. How long this will take varies, but it will happen. The only fix is a transplant, and, since this is an auto-immune illness, it isn’t unusual for it to recur. The name made sense: primary (firstly), biliary (bile ducts destoyed), cirrhosis (inevitable effect in the long-run).

But at least the same letters apply, so PBC can become PBC.

Why change to a less accurate name?

Ignorance and prejudice. Although there are many conditions that can cause cirrhosis, the biggie is excessive alcohol use (of course, there are daily drinkers who do not reach end-stage liver disease) and hepatitis (and one of these can be caused by using dirty needles).

And so cirrhosis is a huge trigger word: this person’s lifestyle has caused her condition. For many, the social stigma is as bad as the condition itself, and the medical community decided these people have enough to deal with. They are not even close to fixing the disease, but lessening the instant self-righteousness of the unafflicted is within their range.

Say “I have primary biliary cirrhosis.” Most people hear something like “I gobblledly gook blab blab cirrhosis.” Next, they likely speculate on what vice is the cause of the problem.

It’s a rare enough illness that I have had to explain it to first responders and ER nurses.

You can feel what isn’t said: the emergency personnel have scraped up enough people killed by drunk drivers to have no sympathy for heavy drinkers.

Believe me, there are no heavy drinkers among those with PBC whose livers are failing. If the liver can no longer handle red meat, it isn’t going to be up to processing alcohol.

Maybe we once drank cheerfully and heartily. Maybe we were teetotalers. Neither would have made any difference.

At least the next time I’m hauled in my biggest problem with listing my medical history will be remembering how to spell cholangitis, and not dealing with all the baggage cirrhosis drags around.

 

Protein, Ammonia, Cirrhosis, and Hepatic Encephalopathy: What I Learned

My last post, “Hepatic Encephalopathy: On Knowing I Didn’t Know What I Knew I Know,” ended with me trying to cope with an episode of confusion, temporary loss of lifelong memories and inability to form new ones a week following the installation of a Transjugular Intrahepatic Portosystemic Shunt (TIPS) to deal with the portal hypertension resulting from cirrhosis, a consequence of Primary Biliary Cirrhosis (or Cholangitis) (Regular readers will be used to the growing “This is the house that Jack built” nature of my introductory sentences.).

I believe I have regained all I had lost of my memory. The treatment was (and continues to be as a preventive) an extreme laxative called Lactulose that “works by drawing ammonia from the blood into the colon where it is removed from the body.” It is a sickeningly sweet liquid that makes my intestines feel as if they’ve been invaded by frolicsome ferrets, but this transient discomfort is trivial compared to the frightful alternative of hepatic encephalopathy.

After the TIPS was installed, I was told to avoid fried food and red meat and I complied (by the way, pork is not “the other white meat” when it comes to ammonia: it is a red meat). However, because of the events of the two weeks preceding my encephalopathy (days at the nursing home, my mother’s death, 300 mile each way trip to UAB, two endoscopies with conscious sedation, general anesthesia with the TIPS, etc.) I had become very irregular, backed up as it were.  I was not getting food processed and through my digestive system efficiently, and certainly not quickly (now the Lactulose helps with that).

My understanding of why I should avoid red meat and eat small amounts of protein over the course of the day rather than in two or three sessions was slow in coming.

After release from the hospital, my family and I started a hunt for low-ammonia foods. No luck — just try to find the low ammonia diet. There are horrifying stories about “pink slime” and the use of ammonia to control e coli in food processing plants (remember that? The “pink slime” Wikipedia entry hasn’t been updated since 2013, which doesn’t mean the stuff isn’t still around.). Red meats and rind cheeses were listed as items to avoid if you suffer from cirrhosis, but there wasn’t a clear indication of why. Finally, I contacted a food scientist I knew who provided the key.

I was not going to find low ammonia foods. Ammonia is a by-product of the breakdown of proteins, whether they be animal or plant-based. The thing is, red meats and rind cheeses (and to a lesser extent, chicken and fish) are more protein-intensive than vegetable-based proteins, so more ammonia is produced during their digestion.

For most people this isn’t a problem. The liver takes care of the problem, as it handles other toxins consumed.

But a cirrhotic liver isn’t up to the task. Think of all the drug labels and commercials that tell you to consult with your doctor before using if you have an impaired liver.

Red meat should contain a similar warning.

From the 1950s (at least) into the first years of this century, cirrhotics who had experienced hepatic encephalopathy [HE] were told to eat little protein, period, and malnourishment was common among cirrhotics. As their bodies consumed their own muscle and fat for protein, ammonia was released, and thus HE was not avoided by not eating meat.

Now the advice is for cirrhotics to consume more protein than than non-cirrhotics, and I have been told that while it is most important to get enough protein — to eat chicken and fish if I need to — non-animal sources of protein are less of a challenge to my liver. I am still looking for studies on whether vegetarian or vegan diets are superior for preventing HE in contrast to those that include some animal protein. If it were possible to eliminate the need for Lactolose or rifiximin (an antibiotic used to prevent HE), I would go vegan.

It was easier to give up red meat than I would have imagined. Back when severe anemia was one of my major issues,  I was a staunch defender of meat-eating, arguing that for some of us, a vegetarian diet was not an option, that we couldn’t otherwise get the iron needed to raise our hemoglobin from the 8’s to the 12’s without transfusions or infusions. And I still think that universal vegetarianism isn’t practical, unless you want to require all who live in regions inhospitable to agriculture to eat processed foods shipped in from other climes (are there any Sami, Inuits, or Eskimo thriving on locally-produced vegetarian foods?).

Now I eat far less chicken and fish; they don’t dominate the plate but are supplements to the grains and vegetables, and I eat them only a few times a week. I eat a lot of beans and rice, oatmeal, grains. No fast food — and I don’t miss that at all.

There’s a relief to being forced to do what I’ve known for a long time I should do but have been too lazy to bother doing.

So far, I’ve had no more problems with HE. There are other theories about what causes hepatic encephalopathy, but the prevailing one is that when the liver can’t handle the ammonia that is a by-product of protein digestion, the ammonia crosses the blood-brain barrier, and the brain becomes a sink for this noxious toxin.

Still, it is amazing to me that cirrhosis has been recognized as a disease for hundreds of years and yet so many questions remain about its treatment and effects, but I suspect that may be because it is largely linked to alcoholism, and the stigma of cirrhosis as a lifestyle and avoidable disease.

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.