Furry, Feathered Frolic

It’s birdie time again.  This post will be heavy on the photos.

Over the last couple of days, our backyard has been resplendent with critters.  Flickers, Turtle Doves (aka Mourning Dove), squirrels (yes, those too), and little tiny birds of unknown pedigree hopping amongst the crowd.

This adorable little Turtle Dove practically posed for me as I photographed him/her the other morning .  The young ones are called “juvies” when they’re young. The adults produce broods late in the Summer.

Pure innocence in those sweet eyes.  He would allow me to get surprisingly close before hopping  off to a safe distance.  Then back to some serious pecking business.

Keeping an ever watchful eye on me.

Unlike this robin who is full of challenge and confidence in his undeniable cuteness.  He doesn’t seem to think I’ll mind if he helps himself to one of the peaches that the squirrels have discarded.

Can’t remember the last time those thieving rodents allowed a peach to ripen enough to be enjoyed by a human.  But it’s nice to see some sharing going on.

Our young Turtle Dove hasn’t yet mastered the flight thing too well, so when he gets startled, he flaps all crazy-like to get to a short fence.  He’s got that right foot out and he’s truckin’.

A Kodak moment amongst all the peaches that are destined to land on the ground.

Turtle Dove juvies are referred to as Squabs.  Not a term I care for, as it gives rise to visions of ornate table settings, linen napkins, and snooty waiters.

In contrast to the youngsters’ cuteness quotient, the adult Turtle Doves are downright regal and proud in appearance.  I’ve always been moved by these guys.  The way the wings join their body, giving the appearance of padded shoulders.  They look like little soldiers.  The un-mated males sometimes make a mournful sound in the evenings that tugs at the heartstrings.

These birds are monogamous - something I like to see in animals.  To feed the youngsters, they produce something called “crop milk” which collects in a little pouch in the back of the gullet.  They mix that with other morsels they’ve gathered to produce a sort of soft, bland cereal.  When they fly, their wings make a “chirping” or “whistling” sound, giving the impression they’re grunting with the effort.  Quite the contrary, they can fly fast and bullet straight at speeds up to 55 mph.

This dude is a European Starling who is molting.  Hence the disheveled appearance.

And this speckled little sweetie has pretty much grown in his new feathers.

The rest of these photos are from a spontaneous critter party that I inadvertently crashed early yesterday morning.  My long lens made it possible to catch more of the revelry.

There are a couple of Red Shafted Flickers at the center of this soiree, feeding quite companionably alongside little teensy birds.  There are two flickers in the first two photos, but the one lurking in the background isn’t too evident.

Squirrel photo-bombs.

Varmint vanity.

Rocketing rodent.

Caught in mid-hop.

And let us not forget the wee peeps.

Ain’t nature grand?




RAM

Curiosity

I got to thinking recently about my incessant curiosity as a child.  While I was growing up, our encyclopedia became dog-eared.  I made good grades because I read everything I could get my hands on.  I wanted to become a librarian until I discovered that nobody can live on that salary.  Even though I continually sought facts in books, I seldom found anything revealing what I really wanted to know.

My thirst for details came from a childhood during which the only matters the family discussed in my presence were this year's cotton crop, those uppity niggras, and the Communist threat of the Cold War.  Heads between your knees - everybody!  And heaven forbid I ask any questions about my parents. [see Queen for a Day]  My brother & I had different fathers, and I was unaware of this until my Auntie Mabel cleverly let it slip into conversation while I was in the room.  When I was fourteen years old, fer God's sake.

I was raised by my Grandmother, Ava.  I called her “Mom”.  Auntie Mabel was Mom’s sister.  Being pretty clueless about picking up on vibes back then, I didn’t sense the tension in the air when Mabel suddenly remembered she had something to do, and backed out of our driveway in a cloud of dust.  Mom was still holding her hand over her heart as she sat down with me to do some explaining.

I had known since early childhood that my parents died when I was two. I was only told that my dad was killed in a butane explosion and my mother died soon after from breast cancer.  The end.  No more questions please.  It was like a memorized litany, which I repeated to others when asked.

The following details I unearthed for myself decades later.  I did some creative Googling, found some newspaper articles and, amazingly, Johnny and Kathryn’s death certificates.

Kathryn was diagnosed with breast cancer and had surgery when I was barely one year old.  The following summer, in May, Johnny was cleaning his warehouse floor with butane-powered equipment.  It somehow ignited, causing an explosion.  He died the next day from his burns.

The following July, Kathryn lost her life to the cancer.  This was 12 days after my second birthday, and 9 days after my brother turned 12.

I was too young then to recall anything about these folks later on.  Not the sound of their voices or the look in their eyes - nothing.  I do not see anybody that looks familiar when I view their photos.  

But I do recall another event with cinematic clarity.  Mom (Ava) takes me inside a portrait studio to be photographed.  The photographer uses a Mickey Mouse in an airplane to coax giggles from me.  I’m wearing a little yellow sun-dress with ruffles, and I complain about the fact that it has a serious side-boob problem.  Mom is annoyed that I waited until we were driving there before I voiced my discontent, and it was too late to go back home.

Mickey totally cracked me up with his airplane, and my wardrobe malfunction worries vanished.  Much later on, probably in my teen years, I mentioned this memory to Mabel and Mom.  Their jaws dropped in shock.  My experience in the studio took place only days after Kathryn’s funeral.  Huh.

My family had been devastated by their loss.  Mom had lost her only daughter.  Kathryn’s brother, my uncle, was heart broken.  I suspect this is why I felt I wasn't allowed to ask many questions.  It made people cry.  Or it pissed them off.   One of my first learned instincts was to keep my curiosity at bay.  Somebody at some point implied that it was naughty to make such inquiries, that it was an invasion of privacy.

I became sneaky, roaming the house at night when Mom was sleeping, looking for “stuff”.  Anything that might tell me more.  I came across a few intriguing items, but was caught before I could examine them.  I was never, ever punished physically, but cried hysterically upon being discovered in the act of disobedience.  I was so terrified of reproach, of the idea that my family would be "mad" at me.  Of that steely look in Mom’s sweet blue eyes.  I've always wished I had a color photo of her.

So I was a good kid.  I mean, an exceptionally good kid.  I didn’t want to make anybody more sad than they already were.

Mom was as kind as anybody could imagine, and her deep love for me was obvious.  My Uncle was gentle and totally compassionate.  It seemed that the most surefire way to bring about their disapproval was to “meddle” in my own past.  So I became more discreet in my futile searches for clues.

We had an exceptionally quiet existence on this three-acre cotton farm.  Mom was widowed before I went to live with her, and with my brother’s long absences (he went into the service when I was only seven) it was usually just us.  Most of my classmates lived in town, so my summer months were seldom spent with friends.  Nobody in the family ever raised their voices.  Yelling was reserved for the Dallas Cowboys.  We didn't do that sort of thing, at least not when I was around.

Rainstorms where the sky would darken and become black in the middle of the day.  Dust storms with silt piling up in the window sills.  We didn’t have Doppler back then, and we were the only farm around with a storm cellar/bomb shelter.  When things started to look tornado-like, families from two other farms would crowd into the cellar with us.  We had fold-out beds and everything, so we’d all just sleep there.  It was very exciting for me.  Oil lamps, candles, deafening thunder.  The foregoing is the highlight of my more dramatic memories of life on the homestead.

I overheard people referring to me as a “strange kid”.  I think my school teachers agreed.

Now does this look like a child who would gaze out the window, missing salient points of classroom instruction?

Mom and I got along quite well.  We were comfortable hanging out together.  She had been an English teacher.  Her mother and grandmother had been English teachers.  Kathryn had also been an English teacher.  We had a huge library of books, including primers.  After I turned five, Mom and I sat in the hallway floor in front of a long bookcase, and I learned to read.  See Tom Run.  We didn’t have kindergarten in our tiny little community, so when I entered first grade, I was the only kid who already knew how to read.  My teachers were aghast when I came to school with a copy of “The Old Man and the Sea”.  I didn’t understand the book very well beyond finding it dark and sad, but I felt that carrying it gave me an air of early maturity.  During reading period for my class, I trotted down the hall for third grade phonics tutoring from the wife of my late father’s best friend.  Phonics, with a little Latin thrown in.  Highly valuable early learning that few kids received back then.  Thank you God.

My great-aunt Mabel came around a lot.  Mabel was single, never married, and quite “worldly” in her life of traveling and socializing.  The tongues that wagged over my parents’ partner-swapping improprieties, (Glen left his Queen and moved in with Alvina...) got an additional workout due to the controversial lifestyle of my rebellious great-aunt.

Mabel's eyes twinkled with mischief.  Never married, had a number of boyfriends, consorted with strong, confident women.  Mabel’s staunchest ally seemed a little too masculine for the sensibilities of the town watchers.  I admired her bravery.

Shockingly, Mabel drank wine openly, even in her old age.

My great-aunt was the first woman to hold public office in her county.  She had friends who were authors and artists living in Santa Fe and Taos.  She was often asked to house-sit for one of them while they traveled to Europe or wherever.  These were Nice homes.  After I reached the age of 13, I sometimes accompanied her, spending a couple of months at a time in opulent surroundings.  At all times, I was admonished to tread carefully.  There was always some comfy bay window where I could curl up to read, or a deep arroyo behind the house to explore.  Mabel had never had kids, had never wanted kids, and possessed little tolerance for their behavior.  This woman might want to yell at me when I acted like a child, but instead she usually got massive tears in her eyes, her lower lip would tremble, and I’d feel oh so guilty.  I spent some time with an artist who lived in the basement of a place we were house-sitting.  He tried to teach art to me, and finally threw his hands up and said I had “no perspective”.  Good to know.

Mabel was the only connection I had to the world outside of West Texas small town mentality.  She introduced me to culture, museums, American Indian history.  Mabel understood my family’s reluctance to talk with me about my parents, and she grudgingly went along with their secrecy.  She finally blew their conspiracy wide open when she casually mentioned that my brother had gone to see...his father.  Hearing this revelation had the effect of seriously unhinging my grasp on reality.  As kids will do, I had long nurtured a fantasy that perhaps my parents were really alive, and for some bizarre reason, I’d been sent to live with old ladies.  I vaguely remember conversations wherein Mabel was telling Mom that it was time they loosened up a little with the information.  Out came the scrapbooks and many boxes of photos and news clippings.  Nobody wanted to look through them with me, so I shut myself in my room and pored over them.  I lovingly put every item in a scrapbook, labeling each one.  I still have them.

Mabel is on the right.  Mom is the one in drag.  Little wonder they didn’t like to discuss the past.

And here we have our duo fondly recalling their glory days.

I will be forever grateful for Mom’s stabilizing influence on my perceptions.  My uncle and his wife were devout members of a popular Bible Belt church.  No dancing, no musical instruments in worship services, no drinking, no tolerance toward the ideas of others.  Their doctrine was firmly rooted in the belief that anyone worshiping differently than them would go straight to Hell.  During one service, the pastor talked about divorce.  He claimed it was an unpardonable sin to divorce and remarry, unless one or the other of the partners committed adultery.  Otherwise, there was no possible forgiveness to be had, and the sinner was hell-bound.  No redemption.  I wasn’t too clear on what adultery meant, but I was pretty sure one or both of my parents was in big trouble.  I don’t recall who I spoke to after the sermon.  I imagine it was one of the elders who was friendly with my uncle.  I went up to this guy with tears in my eyes, asking in a trembling voice if this meant my mommy and daddy were in Hell.  His face went florid and he began stammering.  I got home after church, hysterically telling Mom what I had learned.  Mom was not one to ever set foot in church.  This day, she explained why, and I was comforted.  The God of my understanding does not set such harsh terms.  From there on in, I dutifully attended church.  It was safer to placate the wife of my Legal Guardian, lest she think me to be a Godless pagan.  As long as my immortal soul was safe, my aunt was less likely to urge my uncle to interfere in the relaxed and mutually trusting relationship I had with Mom.

Now I understood why Mom sometimes drove to another town to catch a movie on Sunday mornings.  She and Mabel once picked me up at church after seeing “Lolita” at the Granada Theater in Plainview.  Scandalous information, which she trusted me to keep under my hat.
I didn’t even have a curfew.  Mom could count on me to be home at a reasonable hour, and I always was.  As long as we flew under the radar, all went well.

Delighting my aunt with the transformation, I was baptized at the same age as all my peers.  After the baptism ceremony, I was expected to stand in line with a bunch of kids whose heads were similarly soaked, shaking hands with parishioners as we received congratulations.  I drew the line at that bit of theater.  Right after I was yanked to my feet, drenched and sputtering Baptismal water from my nose, I toweled myself off and walked briskly through the evening air to the car.  I was listening to The Four Seasons telling me that Big Girls Don’t Cry, Chubby Checker doing The Limbo Rock, The Shirelles longing for their Soldier Boy, and The Surfaris, uh oh Wipe Out - here they come.  It’s my Aunt and Uncle, and they look grim.  They were mortified by my daring dash out the side door in view of the entire congregation.  What would Deacon Jim Bob think?  I replied that I had a headache and was about to throw up.  This explanation always worked.

Mabel, Mom and I traveled to Carlsbad Caverns, Santa Fe, Taos.  These two elderly ladies and a young girl, enjoying the hell out of ourselves.  We played cards a lot, took long walks, talked and laughed and told jokes.  Ate many slices of Sara Lee All Butter Pound Cake.  It got to where we treated each other pretty much like friends, and we had great fun.  For circumstances to have started out in such a dysfunctional manner, my home setting eventually morphed into a decidedly healthy, if strange, upbringing.  We just all had to get used to each other.  When I came home for my first weekend back from college, Mom got out the blender, produced a bottle of Absolut from under the kitchen cabinet, and made us a pitcher of Tom Collins.  Now there was an item that my childhood snooping had never turned up.

I celebrated my 21st birthday with Mom, Mabel, and my uncle in the house where I grew up.

The following November, Mom passed on at the age of 80.  Less than a year later, I left for Colorado, and a not so stellar career in the music biz [It’s All Right Now].  Mabel and I hooked up now and then, either in Plainview or in Santa Fe.  We exchanged literally hundreds of letters up until a few years before she died at the age of 96.  During all that time, I continued to resist asking questions of her.  My sense of awkwardness with family was still ingrained.  Everyone who remembered the people that I never knew, are gone now.

But I remember Mom and Mabel.  These two kept no secrets from me about who they were, and it satisfied my curiosity about family in general.  When I think of them, I smile.


RAM

PBC - Leashing The Beast

I haven’t yet published two posts in a row on the same subject, but I wrote myself into a corner last week.

If I were recently diagnosed with PBC, I'd want to know how the progression of the disease is monitored.  I might not want to know so much about post-transplant complications, but I should relate my experiences in that area.

I don’t know the actual percentages but my esteemed and cheerful surgeon assured me that the set-backs I had were a somewhat common occurrence.  My surgeon is the Professor and Chief of the Division of Transplant Surgery.  He did his transplant fellowship with Thomas E. Starzl, MD, the “Father of Transplantation”.  I was comforted by the fact that here was a man who knew whereof he spoke.

There are four enzyme levels used to gauge the severity of Primary Biliary Cirrhosis (PBC).

• Alkaline Phosphatase (AP) - Reference Range 39-117
• Alanine Aminotransferase (ALT) - Reference Range 0-47
• Aspartate Aminotransferase (AST) - Reference Range 0-47
• Bilirubin - 0.0-1.3  

When I was first diagnosed in October of 2000, the red flag was a high Alk Phos.  I believe it was around 800.  When a patient has elevated liver values, a whole series of tests are run to determine the cause.  In my case, further evaluation determined the presence of AMA (antimitochondrial antibodies) in my system.  This is the determining factor in a diagnosis of PBC.

After I began taking Ursodiol to slow the progress of the disease, my enzyme levels dropped significantly.  Over the years, these numbers remained very much the same, sometimes dropping to near normal.  It wasn’t until the end of 2010 that it all began to climb, but not by much.

By the beginning of April, after four hospitalizations for severe bleeds and being placed on the transplant list, some of my numbers were considerably higher, but my MELD score was only 10.  The absence of lab values that would indicate the demise of my liver originally led my care team to suspect a number of ailments.  At first, it was Irritable Bowel Syndrome, then gluten sensitivity, then later after the first bleed, ulcers were suspected.

Fortunately, on June 30 (my birthday) the tide began to turn with an AP of 1117.

After I was discharged, my numbers continued to improve.  Then, in November, it all went wonky.

I was deemed to be having a “rejection episode”, and was given Solu Medrol infusions (a type of steroid) for three days.  When there was no improvement, I was hospitalized for five days to receive Thymo Globulin infusions.  This medication is derived from rabbit proteins.  Yes, rabbit.  I referred to it as “Rabbit Juice”, which got a few laughts.  This series of treatments basically reboots the immune system.

It was Dad’s first Thanksgiving without Edie (Grace), so he and Wingman spent the holiday at the hospital with me.  Wingman cooked a big dinner and baked homemade bread.  I ordered up some pumpkin pie, and we had us a fine old time.  Considering.

My enzyme levels had become stabilized, and I met with my surgeon on December 1.  We had an optimistic conversation with him, and left his office in a mood approaching cheerfulness.  It was snowing that day, and as we were walking through the parking lot to the truck, I let go of Wingman’s hand for “just for a second”.  My feet flew out from under me, and as most people do, I put out my hands to break my fall.  Of course, I broke my right wrist instead.  Radius and Ulna snapped so that my wrist looked like a dinner fork.  Parking valets ran to my aid, a wheelchair was brought, and I was in the ER within minutes.  A Security person took photos of the bottoms of my shoes, quickly establishing a defense in case I decided to litigate.

I was entirely too discouraged by then to retain legal representation, so I instead settled in for a winter of sulking.  I can assure my readers that this part is not a common hazard for transplant patients.  I began mousing with my left hand and became so accustomed to it that I haven't yet switched back over.

 

The wrist healed remarkably well, and I began working with a personal trainer to get my muscle tone back.  When one lies on their ass for several months, the body generally rebels at movement.  Things were going swimmingly until May.  When I had my first rejection episode in November, I was surprised, because I felt perfectly fine.  This time, however, I knew something was wrong.  I felt like crap.  No energy, nausea, huge fatigue.

Again with the Solu Medrol infusions followed by hospitalization for ten days of Rabbit Juice.
 

By now you’re probably thinking, “WTF?”.   So were we.

Shortly after this humbling experience had wound down, my case was transferred back to my long-time hepatologist.  I was beginning to feel almost perky when I met with him.  The good doctor explained that, prior to the transplant surgery, I had become really sick.  My liver had shut down almost completely, causing considerable harm to the overall functioning of my system.  When this happens, most patients have a difficult recovery, and the rejection episodes are somewhat expected.  This cleared up a lot of the mystery for Wingman and me.

I had thought many times before this that I had reached a turning point, only to be slapped back down again.  But I knew deep in my bones that I was finally on my way this time.  And I am.  Recently, Wingman told me that he’s missed me and he’s glad I’m back.

Me too.  I might even get back on that bicycle before summer is over.

RAM

PBC - The Nature of the Beast

Around the time my liver disease became life-threatening, I searched the Internet for blogs by people who had gone through similar experiences.  And lived to tell the tale.  I also was looking for plain talk about technical stuff.  I was unable to find what I wanted, and vowed there and then that I would someday write a blog containing answers to the questions swirling around in my head.

Sorry - can’t do that.  There are few answers.  All I can provide is what I learned through my personal experience, which will probably differ wildly from what others encounter.

In the year 2000, I had gone to my doctor to get myself checked out.  I’d just turned 50 and thought maybe I should start taking better care of myself.

A short while after running some blood tests, my doc called me at home.  She said my liver enzyme numbers were unusually high, and she wanted to send me to a hepatologist.  Besides a rush of fear, I was immediately sure that my long-held love of partying had finally caught up with me.  Like many people, I assumed that liver disease was all about alcohol, and I was now branded as a lush.  I was mortified that I’d done this to myself, and was sure that all my friends, co-workers, bosses would shun me.

After more blood tests and a liver biopsy, I was diagnosed with Primary Biliary Cirrhosis (PBC).  To my relief (from an ego standpoint), I leaned that alcohol does not cause this illness.  PBC is an autoimmune disease that appears to be genetic.  It is considerably more common in women (by a ratio of 9 to 1), and their offspring often have the condition.  Female siblings generally share the disorder.  We are born with it, but it often doesn’t show up in blood tests until much later in life.  All of my results were normal up until the time they just weren’t.  After much research, a credible cause has not been determined.  Nor has a cure.

This condition slowly destroys the bile ducts, which are a whole network of various sized ducts branching through the liver, ultimately delivering bile to the intestine.  When the bile ducts aren’t working as they should, the bile is prevented from being transported to the intestine and enters the bloodstream.  The primary and most common symptom is fatigue.  Over time, the main ingredient in the bile (bilirubin) accumulates in the blood, resulting in jaundice which causes the skin and eyes to become yellow.  Because the bilirubin is deposited in the tissues, severe itchiness occurs.  Urine gets darker, and the stools are paler.

Some patients will develop ascites, which is a build-up of fluid in the abdominal cavity.  Ascites can cause severe swelling of the abdomen, making it necessary to undergo a procedure to drain the fluid.

As the liver continues to decompensate, portal hypertension arises causing gastrointestinal bleeding.  Varices, which are extremely dilated veins, begin to appear in the esophagus.  These can rupture and cause an esophageal bleed, which could be fatal if not treated immediately.  To reduce the risk of bleeds, doctors use endoscopic techniques to “band” the varices, using an actual rubber band to tie off the veins.

As the liver's function becomes more impaired, it's prevented from cleansing toxins that are produced by the digestive process.  These toxins enter the blood stream causing, among other things, a build up of ammonia in the brain.  This is Hepatic Encephalopathy (aka HE), the main symptoms being forgetfulness, confusion, irritability, disorientation.  One of the more interesting indications of HE is a reversal of the sleep cycle, causing the patient to become nocturnal.  This symptom began early on for me, and Wingman became concerned over my strange behavior.  He was actually more irritated than concerned.  The condition made me lose my focus to the extent that I was unable to recognize the fact that I was getting weird.

In February of 2010, Wingman and I went to Culebra, an island just East of Puerto Rico in the Caribbean.  We’d always wanted to go to the islands, and it was a timely blessing for us to have that chance before my health went down the tubes.

We spent time with our friends Grady (Artist in Residence) and Walt.  We went sailing in Walt’s little boat.

It was an amazing journey, and with my fragile immune system, it’s not one I’ll be experiencing again anytime soon.  I couldn’t keep up with the guys as we walked around the island, and they were teasing me for being such a sissy.  Looking back, I believe the PBC fatigue was kicking in big time.  As was the encephalopathy.  I misunderstood three-quarters of everything that was going on, to the considerable annoyance of my companions. Nobody could understand why I'd become so slow-witted.  Least of all myself.

On my birthday of the same year, Wingman arranged several get-togethers for me with various long-time friends.  I was touched by his thoughtfulness, not realizing he could sense which way the wind was blowing.

I’d always wanted a bicycle my size, and that was my gift from Wingman.  Not long after this, my stamina faded to the extent that I haven’t been able to ride since.

When I was first diagnosed in 2000, my hepatologist prescribed a drug called Ursodiol.  It’s been shown to slow the progress of the disease, and it did so for me.  From that time forward until 2011, I experienced very little evidence of the disease, beyond fatigue.  When I began having extremely serious symptoms, my liver enzymes were still showing only mild elevation.  As a result, it took longer to determine the fact that I was actually approaching end-stage liver disease.

The truth is that every PBC patient has a different experience with the disease.  I cannot tell anyone what to expect.  I can only relate how it went down for me.  A number of ER visits with life threatening episodes, undergoing multiple endoscopies, transfusions, and eventually receiving a liver transplant is how it happened for me.

There are those PBC patients who never develop serious symptoms, and who eventually die from an entirely unrelated cause.  I had heard this, and sometime around the mid 90‘s, I asked my doctor about it.  He agreed that this was so, but then told me he felt I’d go into liver failure around 2010 or 2011.  That fucker was right.  I generally don’t use the names of key characters in my blogs, and I won’t in this case either.  But he’s totally my amigo, my advisor, my warmth fix, my consistently intuitive champion.  He’s so supremely self confident that I listen to and take every word he says for the truth.  I didn't feel that way in the beginning - I took his confidence as arrogance.

The rate at which the disease progresses is determined through blood tests.  The results of three specific tests are plugged into a formula, which produces a MELD score (Model for End-Stage Liver Disease).  I need to note at this point, that I never learned the scientific functions of these components of testing.  I was too busy being concerned with the bottom-line number after the “equal” sign.

A number of PBC victims are unable to work or participate in usual activities.  They have frequent hospital admissions due to dangerous bleeding episodes requiring multiple transfusions, and are mentally impaired due to encephalopathy.  Despite these life-threatening incidents, they have a low MELD score, which is associated with a statistically ok survival.
 
This creates a very frustrating situation for both the patient and their care team.  I was one of those patients.  After my second hospitalization for a bleed that put me in the ICU, my MELD score was only six.  Two hospitalizations later, it was up to ten.  When I was placed on the transplant list, I was officially in end-stage liver disease, but my MELD score didn’t agree.  There was doubt that my score would climb quickly enough to qualify me for a donor liver before my old one became inoperative.

Therefore, I was approved at that time for a living donor transplant should I be able to connect with a suitable and altruistic volunteer.  However, the hospital had a no “good samaritan” policy.  In other words, a stranger or even someone I knew only casually would not be accepted.  The donor had to have the same blood type, be under 55, and a family member or long-term, close and trusted friend.  Setting up a website to appeal for a donor, or advertising my plight on Facebook was no longer an option.  Of course, I told my story to absolutely everybody I met.  That included the checker in the grocery store or the shopkeepers in our favorite haunts in Capitol Hill.  I never knew who might overhear and be able to help me.

Out of left field, a prospective donor stepped up in the form of a young student that we met through a neighbor.  Greg captured our hearts when we first met him, and we had grown very close.  He was and still is my hero.  Greg went to get his blood typed, and called me on my birthday to tell me that he was a match.  There were long discussions regarding the risks to his health, the fact that his gall bladder would have to be removed, and that he would miss a semester of school.  We even spoke with his mother, who was passing through town around that time.  She had been a good samaritan donor for a kidney patient, and was supportive of Greg's decision.  She is no doubt pleased with her kindhearted son.

Then, heartache.  Greg was turned down as a donor because of the difference in our weight.  Anybody who weighed 80 pounds more than me couldn’t be accepted.  At first, we just didn’t understand.  We thought that he would only be donating a lobe of his liver, after which it would regenerate to full size.  So, what’s the problem?  It was explained that the lobe he gave me would grow as well, and would become as large as his current liver.  And that would be too large for my tiny chassis.  This was entirely new information to me, and I was stunned that I hadn’t already been told.  Finding a donor under these circumstances was so unlikely, that the minute details just had not yet  been related to me.  Makes perfect sense now.

Greg was devastated and even asked us if we thought it would help for him to lose weight.  Poor bunny.  I told him to keep his battle gear ready, because he would undoubtedly be called upon for other things in the coming months.  Relying on humor, I told him that my biggest disappointment had to do with my hope that his liver might have given me better rhythm or enhanced my dancing skills.  His friendship continues to be our rock and our sanity.  He's been an enormous help in getting us through the really hard days of my recovery.

When I was talking with my doctor later about the MELD dilemma, he mentioned something I’d heard not long after I was first diagnosed.  There has been speculation that Ursodiol can actually “mask” blood test results after long term usage of the drug.  Even though he didn't advise me to stop taking the Urso (I don’t think it was legal for him to suggest it), I stopped anyway.  A short while later, I ended up calling the transplant team to ask whether or not it would matter, and they were like, "Sure, go ahead.  Whatever."  That was at the beginning of July, and here’s what happened next.

These factors are used to calculate the MELD score:
INR - Reference range 0.9 - 1.1

The higher this number, the more likely it is that the patient will experience uncontrolled bleeding.  While I was on the list, my teeth took a dive on me.  This can happen with liver disease.  I needed oral surgery to remove two crumbled molars that had become infected.  My INR was already 1.2, but was still considered to be within the safety zone.
Bilirubin - Reference range  0.0 - 1.3

This is the stuff that enters the bloodstream, turning patients orange, producing unbearable itching, and allowing toxins to enter the brain so that hepatic encephalopathy sets in.  Bilirubin and INR are the two components most responsible for increasing the MELD.
Creatinine - Reference range 0.40 - 1.20

Due to increased toxins in the bloodstream, the kidneys take a beating.  When this level goes up, the kidneys are not happy.  And a higher level wouldn’t make enough difference in the final score to matter.

I had weekly blood tests, and could pull up my results from the University of Colorado Hospital website within a couple of hours.  Besides my MELD score, I also anxiously awaited my hematocrit results.  Anytime that dropped, I was in danger of having another bleed.  Please, no more of those.

Once results appeared on the hospital site, I’d enter the numbers in the MELD Calculator, breathlessly hoping for a higher score.

A bar-graph reflecting patient MELD scores by blood type was maintained on the site.  It was updated several days a week.

Each time my score changed, I’d pull up the latest chart to see where I stood in the liver lottery.  For example, a patient with a score of 16 is in a group of ten people waiting for a liver.  That person is in line behind a group of 12, another group of 7, another group of 3, and so on.

However, the next updated chart will show an entirely different number of folks in each group.  Some will have advanced, due to a higher score, and some will have fallen back, some will be removed from the list for whatever reason, and some will die.

I was continually emailing friends with a screenshot of the latest MELD chart.  Since I had some time on my hands, I attempted to make my reports entertaining.  I had gotten pretty loopy.

If you will recall, my possible living donor was turned down at the beginning of July.  At that time, I had a MELD of 17.   By the 26th of that same month, my score was 22.

Only 15 days later, I chalked up a 27.

September 2, 2011 

Check out that Bilirubin at 14 (1.3 max) - I was so orange
The INR was crazy high at 3.6 (1.1 max)
Creatinine - Irrelevant

These charts generally only go up to around 29, and there I was at 31 with somebody else at 42.  Quite unusual.  For all I know, quitting the Urso had nothing to do with the meteoric rise in my score, so it's not something I'd advise anybody else to do (disclaimer).

So I’m looking at this and thinking, why is my phone not ringing?  Here’s what I learned.

There are many things about having a high score that I didn’t know at the time. Anybody with a MELD that falls within the top ten numbers on the chart could get a call at any time.  Even with a score that's the second highest on the bar graph, the next liver that becomes available must match the recipient in a number of ways.  Besides being the same blood type, the size of the donor is a major factor.

Imagine that your liver is sitting down there just underneath the bottom right of your ribcage.  It’s nestled in its own cozy little crib with no room to spare.  They can hardly take the very next liver that comes along and just drop it right in, especially if the donor is a Sumo wrestler.  That liver could not be placed into the cubby-hole of a tiny waif like me no matter how high I am on the list.  In this case, the transplant team reviews the vitals of the next person and the next and on down until they find a winner, or they have to make some kind of compromise.

Bottom line, the decision lies in the judgment of the surgeons - because those are the dudes who have to make it all work.  Being in the top 10, I could get a call at any time, but having the second highest score didn’t necessarily increase the likelihood.

Eight days later, a Transplant Coordinator called me, and the next day I had transplant surgery.  The date was 9/10/11.

Much of the rest of this story is contained in two other blog posts - “Caregiving Defined” and “Waiting”.

A couple of concerns I had about the surgery never came to pass.  This information might be useful to anybody awaiting a transplant.  Due to several prior hospitalizations with additional outpatient IV treatments in between, my veins had become reluctant to accept the line.  It’s true to this day that I can handle one IV insertion, but when it takes three attempts, I get pretty stressed.

During prior hospitalizations, it was especially difficult when I would have several IV’s going at once.  The lines would get clogged and have to be reinserted, often taking more than one try.  I would get to where I’m like, “hey, that fuckin’ hurts”.  When they took me down to surgery, I was told I’d be getting a tiny painless stick in the back of my hand, and the rest would be done after I was out.  They did not lie.  Nor did they make me count backwards from any number.

The other IV concern I had was taken care of by the insertion of a PICC line (peripherally inserted central catheter) during the surgery.  This is a main line inserted (in my case) next to the armpit and terminating in a large vein in the chest near the heart.  The PICC may have single or multiple lumens (secondary lines joined into the main line).  At the end of the line outside the body, each lumen has a special cap that can be attached to a drip or syringe.  With the PICC, blood draws can be done and medications administered without having to poke more holes.  I think I had about four or five of these lines.

Now here’s the kicker.  I still have PBC, and my immune system will eventually begin attacking the new liver.  It took 50 years for the disease to do enough harm to show up in my liver enzyme tests.  Within that amount of time, my spirit having been graced with a reprieve, will most certainly leave this vessel.  In the interim, I’m allowed to dwell on this earthly plain with humble gratitude for my blessings.

RAM