Obamacare, Mission Hospital WNC, and Financial Aid. Part 1

While this applies to Western North Carolinians specifically, I’d be very surprised if the same problems were limited to Mission Hospital, Asheville. I suppose it is possible that this only happened to one person ever in the history of Mission Hospital, too.*

If you have a bill that you can’t pay and meet Federal Poverty Guidelines (FPG)** don’t be put off by the “plain language summary” explanation of Mission’s financial aid policy at its website.

Have a look instead at its long statement, especially page 2.

When you call Financial Services and are asked, “Do you want to pay off your account or set up a payment plan?”, answer, “Neither. I want to talk about how Mission Hospital, to comply with the provisions of Obamacare and the Federal IRS laws for retaining its status as a non-profit, must do these things”:

Each 501(c)(3) hospital organization is required to meet four general requirements on a facility-by-facility basis:

  • establish written financial assistance and emergency medical care policies,

  • limit amounts charged for emergency or other medically necessary care to individuals eligible for assistance under the hospital’s financial assistance policy,

  • make reasonable efforts to determine whether an individual is eligible for assistance under the hospital’s financial assistance policy before engaging in extraordinary collection actions against the individual, and

  • conduct a CHNA and adopt an implementation strategy at least once every three years. (These CHNA requirements are effective for tax years beginning after March 23, 2012).

Let’s talk in particular about 2 and 3.

Mission should provide at your request help with understanding its financial plan. If you’ve ever been in the ER, be it 3 am or 3 pm, a representative of the billing department is going to show up in your cubicle. But try, just try, to get to talk to a social worker. It won’t happen.

Number 2 won’t make sense to the person who has never had insurance. But if you do, you know your bill has two charges, the hospital’s charge and the negotiated charge. Now, in common only with the most exclusive restaurants, you have no idea what your bill is going to be when services are rendered. The hospital does not have to advertise its prices. Moreover, one price is charged to those without insurance; a negotiated price is charged to those with insurance.

Under the provisions of Obamacare, if you fall into the category of less than or up to 300% of Federal Poverty Guidelines, you must receive the “negotiated rate,” not the full rate

Number 3 is about collection agencies. It is a violation of the law to for a hospital to sell a bill to a collection agency if you ask to discuss if you qualify for financial assistance or during the approval process. They can’t just say, no insurance, don’t want to bother working with this guy, sell it on.

So what do you do if you make minimum wage or not far more? Get ready for battle. Use the magic words “report” and  “IRS.” 

I’ve always had a good health plan. But I am absolutely for single-payer. I see this as a classic example of, I’ve got mine, why should I care about yours? which is simply cruel. Failing that, while Obamacare is being “fixed,” the policies now in place must be enforced. What good it would do to fix Obamacare if right now, there are no penalties for hospitals that don’t comply? There are penalties for not having insurance, after all.

But, you may well ask, if you meet Federal Poverty Guidelines, don’t you get free medical care? Medicaid? Maybe in some states that accepted Medicaid expansion, a healthy male in his 20s could. Not in NC, where basically  two categories qualify : pregnant and elderly who have no money besides $3500, $1500 of which is designated for body disposal.

But what about the healthcare exchanges so that everyone can afford healthcare? Don’t you get a tax penalty if you don’t have insurance? The answer to the second is yes. But look at the policies you can buy in the exchanges. Then do some math. The minimum wage in NC is $7.25, so if you work 40 hours a week, before any deductions, any taxes, in 40 hours you make $290.00. But here’s the thing, if you work minimum wage, you are far more likely to work 39 hours a week so you are not full time.

So let’s pretend you take home $1000 a month. Average price for a studio apartment in the City is $650. So, presto,down to $35, or $35 a day for transportation, food, utilities, and so on.

So what do people do? If they ever, ever want to get a car loan or credit card, they set up a payment plan, and take on another job. Move into a shared space. Hope they don’t get sick or have an accident. Pay the fine, which means not getting a part of the money from their tax returns that is the one time of year when they have a little extra to do things like buy tires, fix the roof, or –maybe if it is big enough –see a dentist. Or at least an optometrist.

Next time I will discuss the barriers to the poor getting what they are supposed to get.

*This is my legal disclaimer since Mission has deep pockets. I can and would be glad to swear and provide documentation for one case. Under this heading.

**2017 FPG for 1 person was $12,060. 300% was $36,180. In 2016, the numbers were $11,880 and $35,640. What, did everyone get a raise on January 1, 2017? Guess some places didn’t get that memo.

 

 

 

 

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My Miami

My mother was born in Miami in 1929 and my father arrived at 3 months in 1927.  I was born at Mercy Hospital on Biscayne Bay, Coconaut Grove, Miami. I never lived permanently in Miami after I left home in 1976, but my parents did.

My mother grew up hearing her father’s stories of the 1935 hurricane when so many Miamians took boats into the Keys to recover the bodies of those who lashed themselves to trees, like mariners to masts, hoping not to blow away.

They didn’t. Instead, they drowned.

The 1960s and 70s were fairly quiet decades for hurricanes, after Donna in 1960. The only category 3 or higher I remember was 1965’s Betsy. We boarded up the windows — which means just what it says, covering with boards.

Then the part my father hated: stripping the two avocado, mango, and grapefruit trees so that the fruit would not become projectiles.

The power went out; it was very dark and we just sat and listened. I don’t remember the heat, but in 1965 we didn’t have air conditioning (and always only had wall units). Then the radio and sounds outside agreed we could emerge. A lot of trees had been blown down, and the neighborhood men worked together to clear them out of the road. 

My childhood home, just west of Coral Gables and 6 blocks south of Calle Ocho (SW 8th street) was built in 1947 and my mother claimed that the rectangular concrete blocks had been turned at 90°, making the walls effectively twice as thick. The house was built in 1947; my parents bought it in 1961 (by that point the carport had been turned into a living room. Not a fancy house, but strong.

6447 specs

Notice that it had a solar water heater in 1947! My parents went through Andrew and Katrina. The roof was (eventually) replaced after Andrew.

6447

By the time it was sold it in 2014, the yard was so thick with foliage you could hardly see the house (the subdivision had once been a dairy).

But they never evacuated or sheltered. Neither did any of my friends’ families. Neither did my grandparents. It was never seriously discussed. Why? The history of the structures.

They were built on solid ground, not drained swamp. They were appropriately designed for the tropics, with thick concrete walls and low pitched roofs. They were inland by a few miles at least. My parents had a healthy respect for hurricanes; they simply trusted their own home more than they did the government shelters. 

My mother’s parents’ house looked much the same when I last drove by it in 2013 as it does in these pictures. I thought it fantastic because if had two stories. It is a frame house, with very deep porches, in the Shenandoah area (now Little Havana), less than four miles to the bay. I believe that the point of such deep porches could have been to take the brunt of lashing rains coming from the east.

house 23rd ave (2)

Later the palm tree was cut down, perhaps to prevent an uprooting and crash on the house. smith house

I don’t have a good picture of the house my father grew up in; by the time I came along, it was my aunt’s. I know it was still standing well into the 2000s.  It was likely made of limestone or concrete. Some of the houses in Coral Gables were built of coral.

What will Miami look like tomorrow after Irma? A mess. The question is what will the houses built before Andrew and after the 1960s boom look like? And those not built on solid ground, but on drained swamp? Or close to sea level?

joe 20s (2)

 

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.

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.