YEAR OF THE PURELL TFX TOUCH FREE HAND SANITIZER DISPENSER

In deference to the late David Foster Wallace,  I am naming this new year the YEAR OF THE PURELL TFX TOUCH FREE HAND SANITIZER DISPENSER (TFHSD).

The TFX Collection from Purell is a high capacity refill dispenser that can carry up to 1200 mL. There is a skylight that is displayed on the front of the dispenser in order to be able to determine when a refill is needed. The dispenser will automatically turn off when it is opened and there are only three C size alkaline batteries needed for long lasting operation. There is a 3 year performance guarantee on this grey dispenser.

Personally, I am more immunosuppressed at this time than any time since leaving Pittsburgh in 1984.  Therefore I have a real concern about avoiding communicable diseases.  What are my fears for 2012? liver failure, liver clots, warfarin overdose, rejection, infection, hep-C, liver cancer.  I fit right in to the American culture of fear.  

In America, we've got: gated communities; 4x4 off road trucks; concealed carry laws; war on cancer; war on drugs; war on terror (defend America http://www.defendamerica.mil/wot.html); weapons of mass destruction; the Department of Homeland Security; Transportation Security Administration (TSA); Advanced Imaging Technology airport scanners. 

Join the the Citizens Corp (FEMA)  (A nationwide grassroots effort to educate and train Americans of all abilities on all-hazards preparedness and to foster collaboration between non-governmental organizations, citizens, and emergency responders on community preparedness issues.)

In the home of the brave, the Air Force 49th Wing flies drones (MQ-1 "Predator" and MQ-9 "Reaper") to Afghanistan and other targets around the world from simulators at Holloman Air Force Base,  New Mexico.  Sometimes they target civilians-- oops!

So,  remember in the new year: 

“If this is an emergency,  hang up and dial 911!”

“The department of homeland security has determined that the threat level for TODAY is orange.”

All patrons are advised to keep within their possession, all pieces of luggage and carry-on baggage. Any piece of luggage found to be unattended will be confiscated and subject to search by the Transportation Security Administration (TSA) 

holiday tips from TSA:

• Yule Logs should be placed in your checked baggage. Preferably unlit…
• Eggnog can be an alternate to fuel depending on who’s mixing it. Sometimes there’s a fine line between a beverage and hazmat.

adisonian

This is a syndrom due to adrenocortical insufficiency (in my case, cutting back too fast on the prednisone). Having a hard time staying awake, feeling groggy and lethargic. Meg bumped my prednisone up by 5 mg which will hopefully get me back on my feet. Meg is going to try a different type of bandage today for my "wound". I have an appointment with the wound nurse on tuesday with the threat of the mechanical maggot if the wound isn't healing fast enough. So far it looks like almost no progress. Meg hast started me on Zinc supplements to try and help it heal. Too much or too little prednisone will also interfere with natural healing. I try to do my best mentally by listening to Marvin Gaye.

wet to dry

The old technique for wound healing is doing "wet to dry" bandaging,  packing the open wound with saline-soaked gauze and changing two to three times a day.  I don't think this is the kind of thing your average spouse could handle.  Patients often have this done by visiting nurses.  But Meg was a nurse, is a physician, and has the grit to do what needs to be done.  She is my "Jack-a-roe" (traditional song popularized by the Grateful Dead).

The war soon being over she went and looked around

Among the dead and wounded her darling boy she found

Oh her darling boy she found

She picked him up on in her arms and carried him to the town

She sent for a physician to quickly heal his wounds

Oh to quickly heal his wounds

Sodium Polystyrene sulfonate

Sodium Polystyrene sulfonate rids the body of excess potassium which can cause heart arrhythmia and sudden death.  It acts by exchanging sodium for potassium.  It is most commonly sold under the brand name "Kayexalate". According to Wikipedia, Sodium polystyrene sulfonate is used as a super-plastifier in cement, as a dye improving agent for cotton and as proton exchange membranes in fuel cell applications.   Needless to say, intestinal side effects are common.  I have taken several large (60g) doses in the last few days.  In my mind, I am eating (and suffering the consequences of having eaten) a bean-bag chair filled with polystyrene pellets.  

rat poison

Warfarin is a class of anti-coagulant drugs that acts to inhibit the synthesis of vitamin-K dependent clotting factors in the blood. This makes it safer than some more modern drugs in that its effects are relatively quickly reversible by giving large doses of vitamin-K.  Wikipedia tells us that it was initially marketed as a pesticide for rats and mice and is still popular for this purpose, although more potent poisons have since been developed. It is marketed largely as "Coumadin" and this is its common name. (I referred to it by this name in a previous post.)

The dosing of the rat-poison is very dependent on food intake, metabolism and interactions with other drugs.  Given the risks and the difficulty adjusting doses, initially (until the INR stabilizes) I need frequent blood monitoring of my “International Normalized Ratio” (INR) that measures time for blood to clot.  One of course is the normal IRN value, and therapeutic  (on what I presume is a linear scale) is two to three.  So today I went to a “Warfarin education” lecture which was given as a power point presentation to an audience of three patients (myself included) and two care-givers (Meg included).  The other patients were elderly heart patients.  Meg had to give me "the signal" as I was anxious and bored and asking too many questions.  I am still in a highly agitated state (prednisone ? oxycontin withdrawal?) and often need to be "reeled in" in public situations (the kids are watchful of my behavior as well).  I tried to focus on boredom.   

I did in fact learn a few things, particularly things to avoid when your blood clotting is slow.  A partial list:

• surgery
• tooth extraction
• banging of head
• policemen with truncheons
• the front line in occupy (99%) protests
• crocodiles (who by the way have the strongest bite in the animal kingdom, stronger than the great white, and to set the scale over a factor of ten stronger than that of a rottweiler like my dog Fido)
• tug of war with Fido, where I win
• hidden carry states where bicyclists can get shot in the head by gun totting firemen (NYT, today!) 

don't ask, don't look

Last wednesday after my daily sponge wash of the incision, a portion flopped open under the stables.  They threatened me with what I call the "mechanical maggot" -- a device known as a wound-vac.  But the surgeon came and looked and said it wasn't that bad, that it would do fine with just "wet to dry" bandage changes as long as it did not "tunnel".   I really do not like that word in this context!  In the hospital they did twice daily wet-to-dry bandage changes.  The slice is about three inches along the incision.  The rest of the incision is OK, and most of the staples have come out.  At home Meg has been doing the bandage changes, taking care of me like I am some civil war veteran, sliced open by a confederate sword.  I was told (encouraged) to shower between bandage changes.  Here I have some psychic advantage in being able to remove my glasses and only get a fuzzy, near-sighted view.  Even so, one look was too much, even compared to the pictures I posted before.  My strategy going forward is to not only remove the glasses,  but also not to look down.

the numbers

And so the waiting game continues, the blood tests and waiting for LFT numbers to come down (or?).
Since friday I have been going to Mayo every day at 7AM so they can draw blood.  This is "one day at a time" time-- do not look up the trail to see how high the summit might be; just keep putting one leg in front of the other.

Back in '83 the docs wrote the daily numbers on a gigantic wall chart.  Meg and I would wait each day anxiously for someone to come in and write down the numbers.  We obsessed about it after the first transplant.  For the first month things went in the right direction (down to normal).  Then they slowly turned around and crept up and up, until the re-transplant became inevitable.

The blood thinners will not cure the blood clot, they will only prevent the clot from spreading.  According the the surgeon, if that happens-- and this is a direct quote, "you are hosed".  Sounds bad, doesn't it?

goin' mobile

My blood has thinned to the point where I am therapeutic.  I expect to get out of here today.

coming apart

'The horror of that moment,' the King went on, 'I shall never, never forget!'
'You will, though,' the Queen said, 'if you don't make a memorandum of it.'

I am literally coming apart at the seams-- a part of my incision has pulled apart despite the staples. And the oxycodone and lack of sleep have conspired to give me a flood of evil dreams whenever I close my eyes. I put on Hendrix on the headphones and try to compose myself, get off this bad trip. To fix the incision they will probably open it up and expose it to air to let it "de-breed", let it ooze. It is time to do the same for my psyche. It is time to tell the story of Cytomegalovirus (CMV).

CMV is another opportunistic infection, this one viral. I am taking Aciclovir (acycloguanosine) as a prophylaxis against CMV. Back in '83 there was nothing. Since my first transplant, every now and then someone would come in and have me swish and spit back into a little cup. This I was told was to check for CMV. No one told me anything about it except that it was another opportunistic infection they were just checking for. But the word opportunistic didn't really sink in. Now I know it is the crocodile lying in wait along the swampy path for just the moment to strike at its prey.

I lost graft number one to rejection. They only had two knobs to tweak back then-- cyclosporine A which is nephrotoxic and they gave me as much as they possibly could; and very large doses of solumedrol. The solumedrol also wastes muscle, so I got progressively weaker. Eventually Dr. Tisiskakis told me that it was me that had to survive, not my liver. After the shock and anger wore off, I resigned myself to liver number two. Yes, Dr. Tisiskakis assured me, I could still end up fine.  He could still put me (as I had requested) on the beach.  For me, it would just take longer.

Everything was harder after liver number two. Slower to get out of bed, slower to start walking again. And then one day one of those little cups came back positive. I started to develop a fever. I noticed fewer and fewer doctors and staff and well-wishers were coming around. I had been very popular after my first transplant and having done so well initially. I had tried so hard to keep a positive mental attitude. I could sense that people were distancing themselves from me.

Fever rolled up to 105.  For several days they had me on a cold blanket to prevent brain damage. I did not sleep or eat. Things were getting really bad. They had nothing to offer me except to back off on the immunosuppressants and let my body try to fight it off.  On the third night I developed a terrible cough. I tried to rally. I pulled myself out of my bed and sat up coughing and listening to Jimi, trying to relax, trying to be that jelly fish floating.

The next morning they took me down for a gallium scan of my liver. After the scan, they parked my stretcher in the hall. You never knew if you would wait there fifteen minutes or an hour and a half. I was lying on my left side as I started to feel a deep calm descend on me. I cannot tell you exactly how I knew, but I knew this was the moment. A white coat walked by and I reached out and grabbed at the sleeve of the white coat. I tried to talk. A face leaned over and I whispered very calmly, ``If anybody cares to know, I am going." Then I drifted off to a semi-conscious state. (I know now that I at that point I had complete and catastrophic liver failure.)  A voice yelled out ``get the crash cart!" I felt as if I was hovering over my body, floating above and watching. They intubated me and put in IVs and took me to the ICU. I felt myself drifting down into total darkness.

Sometime during the night I saw Meg's ever-hopeful face. She said, ``They're going to Jacksonville to get you liver number three". Before dropping off again, I gave her two thumbs up.

sunday walk

Going by the rules I cannot walk off the floor 3 of the hospital without a Mayo nurse.  I made an
appointment, but still was only able to get out for 1/2 hour.  Very nice day with a cloudless (New Mexico) sky.    Perhaps tomorrow with more personnel I can get out for longer.

heparin walk

As I said they are treating the clot with blood thinners.  I will be in the hospital 3-5 days on IV heparin until the coumadin starts to work.

cheating death

Colbert has this very funny segment “cheating death” in which he satirizes health issues in the news.  The serious side of cheating death is obviously a central topic in all cultures.  

After leaving (really leaving) Pittsburgh I had a long list of things I wanted to do.  One of them was to go to MOMA on 

one of my trips to visit NYC area relatives.  

I spotted this painting By Ensor "Masks confronting death" (1888) from across a long gallery and immediately interpreted it as a celebration of temporary triumph over (cheating of) death.  I was in the process of rebuilding my personal illusion of immortality, without which it is impossible to function in the everyday world.  One reconstructs a personal mask with which to confront death and your own mortality.   I got a small group of friends together for the following halloween to dress up as if we were confronting death in this mocking, confident way.  I have a picture in my office of this group -- Meg and I and Peter and Drew.  Meg looks lovely dressed as an angel.  I of course was dressed as death.

draining the swamp

What was I thinking?  There aren't any tigers in Florida.  Here in Jacksonville they have crocodiles.  To get rid of the crocodiles you have to drain the swamp.  At about 4pm today after fasting almost 24 hours they put a tube in my chest (ouch!) to drain the hematoma that has been in a pocket above my liver since surgery.  The hope is that this is the site of infection.  Of course there can be rejection as well (or instead of) infection, so they did a liver biopsy as well.  Still leaves clot complication, but will treat that slowly with a 3-6 month course of coumadin.

pentamidine

Pentamidine  is an old drug used for the treatment of Pneumocystis, a form of pneumonia.  Pneumocystis (PCP) is an "opportunistic infection" that I first learned about during the early AIDs epidemic.  PCP was in those days (and still is) a leading cause of death with AIDs.  According to Wikipedia, it is a yeast-like fungus.  Opportunistic infections are bugs that many normal people are infected with but do not get the disease because the bug is kept in check by the immune system;  they wait for the chance to take over if the immune system gets weak.  

Here at Mayo they treat PCP prophylactically post-op to keep the PCP population down.  Typically they treat with an antibiotic Bactrim which is given as a pill.  I developed an allergy to Bactrim, so I was given the pentamidine as an inhalent.   A small fume-hood was wheeled to my bedside and I sat for about 45 minutes with my head under the hood deeply breathing in the fumes.   This treatment will be repeated in a few months.

In May 1983 at the age of 26 Meg and I left Berkeley so that I could die among family and friends in my home town of Montclair New Jersey.  She had postponed our wedding which was to have been on May 9th.  I had the extreme ascites (fluid in the abdomen) of "end-stage" liver disease.   I could not wear any of my pants, so on the way to the airport we stopped on College Avenue and bought the largest pair of overalls they had in the store.   In New Jersey, I went directly into Mountainside Hospital in Montclair.  Mountainside was where I was born and where my Dad (who died in 1980) practiced medicine back in the day when the doctor who saw you in the office made rounds on you in the hospital.   It was there that Richard Flyer suggested I go to Pittsburgh to get evaluated for a liver transplant.   Richard's parents had been close friends of my parents, and Richard had been inspired by my Dad to become a pediatrician.  He had a patient who had undergone a successful liver transplant in Pittsburgh. So from Mountainside I went to Presbyterian Hospital in Pittsburgh in early June of 1983.  

 I did not leave the hospital in Pittsburgh until new year's eve.  Some time in early spring of 1984 I took my first trip out of (the city of) Pittsburgh to my Mom's house in New Jersey.  (Meg went back to her parents in Westport, CT for much needed R&R.)   On the afternoon of my flight to NJ,  I was lounging on a lawn chair in the backyard of my youth, taking in the early spring day and listening to 

Comfortably Numb (Pink Floyd) on a hand-held tape player (do you remember the Walk Man?) .  This song reminded me of one of my lowest points in the hospital in Pittsburgh, when a raging CMV infection was frying my brain with  fever of 105 and above.  My hands had puffed up from fluid retention and looked like two balloons.  Listening to that song that afternoon in NJ was a bit too much for me.  I turned if off and went inside.  I felt a bit warm.  I went up to my room and (to be safe) took my temp-- 103!  I made a call to Pittsburgh who told me to take a plane back that very same day.  (My mom held up well and drove me to the airport.)  Meg met me in the ER.  In the Pittsburgh ER they knew me and they knew my history.  Reasoning that nothing ever happens on the weekend, the ER doc sent me back to my local apartment on Tylenol with instructions to watch my temp and return on monday.  He did not do a blood gas.  Meg and I went back to the apartment.  A few hours later I was having trouble breathing.  Meg looked very worried (bad sign!) and said I had to go back to the ER now!   Back in the ER, they did a blood gas.   I was admitted on IV Bactrim.  I dodged intubation  and a trip to the ICU by a matter of an hour our so. 

spike!

Spiked a temp of 102.7 early this AM.  Not going anywhere for a few days a least.  They will do a liver
biopsy tomorrow to make the differential infection versus rejection diagnosis.   If you have read Life of Pi then you know why I have been thinking about the tiger Richard Parker in Pi's lifeboat. (Only loosely analogous as in my case the tiger is whatever is causing my fever.)

Coumadin

plan for the clot is to thin the blood and watch for 6 months

clot

Investigation into the cause of the fever leads to clot in 1 of 3 main veins draining the liver; technically, hepatic vein thrombosis.  We just learned of this from the surgeon and are awaiting the hepatologist.  There are two treatment options: one, do nothing; and two treat with (blood thinner) cumadin.  This complication is (surprise, surprise, surprise!) rare.  There are no stats on outcomes in either of these scenarios. Shall we take a poll?

The surgeon tried to reassure me that the situation was not as bleak as it sounded, that the liver was functioning well and there is no reason to fear losing the graft.  There fear is of other complications that Meg and I are obsessing over and the (perceived) risk in the treatments.   Although I am quite familiar with (and frequently use) Bayesian reasoning, in my heart of hearts, I have always been a frequentist.

Not to mention a pessimist.  My mood is drifting towards the poem by Lawrence Ferlinghetti-- http://www.poetseers.org/poetry/the_world_is_beautiful/.

night shift

I am on IV antibiotics.  No site of infection found so far with some tests pending.  I am fine with this as long as the fever stays down.

relaxation

When I was in Pittsburgh ('83) I was introduced to a woman who did self-hypnosis, relaxation techniques.  For pain control this became one of my main tools.  She had a calm, soothing attitude and voice like you would expect from such a person.  I worked on one visualization with her for a long time that came to be my mainstay-- a path in Tilden Park in Berkeley hills I used to walk before I got sick in graduate school.   The walk begins heading west on a level path through a cool, quiet Eucalyptus grove and then breaks out into the open grassland and makes its way north.   You can see the top of the path from here, a lookout where there is a small, low stone wall that surrounds a designated spot to take in the view of the bay.  The path takes you north past this viewpoint, then dips down into another Eucalyptus grove before turning west and rising steeply to the lookout.   The walk is a short twenty or thirty minutes, but the steep part would make me breath hard even when I was healthy.  In my visualization, I could wander this path as slowly as I liked, looking for salamanders and snakes in the rocks across the path, and judging the season by the color of the grass--  shades of fading yellow for summer to autumn, spectacularly bright green when the grass returns after the winter rain.

In 84' one of the first things I did was organize a walk with friends (Peter for sure, perhaps also Tycho) on one of the first clear spring days of the year.  We celebrated my recovery with the Tilden Park walk and lunch at the lookout.  (Me, water;  others wine.)

Today I had an MRI which is a pretty easy test but it does require you to lie still for about an hour in the MRI machine.  If you focus on that itch that you cannot possibly scratch, you can get into trouble.  They give you a panic ball to squeeze if you really start to loose it;  and I suspect that just having the ball allows most people to keep a grip.   The machine makes odd, loud noises in varying patterns, not so different from the sounding of the shofar.  I wonder what is rattling and banging to make such noises?  I make a mental note to look up how the Gadolinium contrast works later (some interesting quantum mechanics here).  I am commanded "take a deep breath, let it out, take a deep breath and hold it".... Teruah..."breath" over and over.  Was I really watching "The man in the iron mask" (1998)  last night?  Ugh, what a bad coincidence!

(Take a deep breath in and let it out) I am standing by the side of the pool with David, preparing to jump in.  (Take a deep breath in and hold it)  We jump into the pool.  I sink way down trying to touch the bottom, I drift slowly up, looking straight up at the shimmering air-water interface and brilliant New Mexico sunshine filtering down.  My head pokes through the surface of the water.  (Breath!)

late night dancing

Saturday late afternoon I took another beach walk.  It was very windy, and I misjudged how much heat I could generate under my jacket which was not as wind proof as it could have been.  I walked north into the wind and a steady current of white sand that came up to my ankles.  The sky was grey and the sea was grey and both sea and wind howled in my ears.  I lept my cap pulled down low to shield my eyes.

I returned to the condo with a mild-moderate hypothermia.   I warmed but kept on warming.  Around dinner my temp was 100.2 and I called the Mayo hot-line.   The cut off is 101.  I was advised to take some tylonol and to wait.  Around 1 AM,  Sunday I nudged up to 101.2 and I was re-admitted thru the ER, an was IV started and I was introduced to my dancing partner (IV pole).

I was started on a "shot gun" anti-biotic.  So far (Monday AM), the hunt for a source of infection has turned up nothing.  Not necessarily a bad thing.  I have an MRI scan scheduled for this morning.  My fever (never that high, peak at 101.5) has been down since Sunday evening.   I am pushing to be discharged later today on oral antibiotics.

Cummer Museum

In downtown Jacksonville there is a small museum on the old Cummer estate.  It is a small museum, with a small formal garden out back.  The collection is largely the idiosyncratic  gathering of art and artifact of an old Southern aristocratic family.  However, they had a large room exhibiting the work of Eugene Savage.  This was a delightful discovery.

Savage painted the Seminole Indians living in the Florida wilderness in the 1930s, 1940s.  (Here is a brief summary of the history taken from Wikipedia.) The Seminoles were a collection of mostly Creek southern tribes that tried to avoid the encroachment of European colonization by retreating to the Florida wilderness.  After the Seminole War  ending in 1858 the majority were "relocated" along with other tribes to the reservations.

Savage painted the Seminoles to document their culture and to witness the destruction of that culture  by the encroachment of "civilization" and environmental exploitation.  His style was a beautiful, soft abstraction as opposed to realism.  I found that the removal of detail left me with a feeling of place-- the extreme quiet and warm soft air.  

A few examples.  You can view more at http://hamiltonauctiongalleries.com/Eugene-Savage.htm.

edema

My "dry weight" is about 150 lbs.   On Dec. 5  I am at about 168 pounds.  The fluid is all over but particularly in the abdomen and the feet.  

They dried me out some with some lasix.  Today, Dec. 9, my weight is down to about 158 pounds.  You can see I have scratch marks from the severe itching from the elevated alk-phos. 

Alkaline Phosphatase

The alk-phos is a liver enzyme measuring the health of bile ducts in the liver.  At the moment, mine is very high and that leads to intense skin itching.  It is "itching from the inside" which still makes me want to scratch.  So I am awake waiting for the itch pill Meg prescribed to kick in, and trying not to scratch my skin raw.

Jean-Paul Marat saw himself as a friend of the people, he was a doctor of medicine and a physicist, and above all he was editor of the news-sheet Ami du peuple. He suffered from a skin disease and had to perform his business for the revolution in a soothing bath.

Today we saw Dr. R. who discussed my elevated alk-phos.  He showed a graph of the level versus time. The level was sky high and rising rapidly the first day or so post transplant.  Since then it has been coming down slowly but steadily.  Dr. R. said that was good, because if it hadn't I "would have been toast".  He used those exact words, and they are words that are hard to forget.  Dr. R. is very quick and all business and does not hold back.  It was clear he was not worried at the moment, and Meg and I left the office calmly.  (Until it is normal and stays there a few weeks, this will still keep us on the edge of our seats.)

I remember the first full post op day in the ICU.  Meg looked at me with grave concern and said my numbers were still very high. I clarified-- "you don't want to know, high".  "Yes." She said the doctors thought that they would come down once the initial trauma to the graft was over.  I dozed and she sat by my bedside by the window.  She was back-lit by the window so I could not see her face.  She spent the day tapping into her cell phone.  What was going on in her mind?  I am sure that she was thinking about all the things she knew could go wrong, working through the specifics of my case, assessing the risks and trying to gauge the odds.  And I am sure she was praying in her head, although I don't know what that really means.  (I certainly would have been disturbed if she stood next to my bed davvening all day!)  She is cool and collected under this stress.  She has an excellent medical mind, one that impresses all the docs.  None of this I knew when I fell for her so many years ago.  I am so grateful to her for being their to watch over me,  watching me as my best medical advisor and as the girl I first fell in love with.

prednisone rage

I have been taking prednisone for acute gout attacks for many years now, and the family is well equated with the effects it has on my mood.  They will ask, "Dad are you on prednisone?".   "Yes, damnit but do what I am telling you to do!"  The story in our family that has reached the level of myth is a time some years ago heading to the LaGuardia airport and being stuck in a long toll line at the highway exit.  A driver of a luxury auto was engaged in the usual game of edging up and trying to jump the line.  I was not going to have it.  You know it is the prednisone working in your brain and you know you are behaving badly, but it is like watching a film of yourself-- there is absolutely no way you can control your emotions.  I yell through the window.  I shake my fist.  I keep inching forward, every inch matching his move until our cars fenders are almost touching.  No!  You are not getting in front of me!  I roll down the window, threaten the life of him and his family.  I reach way out and pound on his fender with my fist. He backs off.  I creep up.  He slides in behind me.  Slowly, my heart rate comes back to normal.  "Dad, are you on prednisone?"

So today I went out to the suburban Mall in Jacksonville to the Apple store for a replacement battery for my macbook pro.  To ensure I got the right battery and so I could recycle it, I brought the old battery.  The apple store was packed with holiday shoppers, all trying products under the careful supervision of the apple "technicians".  I walked up to an available employee, waving the battery and said I needed a replacement.  "What is that?" she asked blankly.  "A MacBook Pro 5 battery and I need a replacement." "Would you like to make an appointment with one of our technicians?" was the polite reply.  We used to call them clerks.  And you didn't used to need an appointment.  Like the janitor in the Tom Hanks move The Terminal, who whenever approached asked "Do you have an appointment?".  The blood surged, my heart started pounding.  "It's just a battery and I need a new one!"  Somehow, this time I managed to hold on.  I turned away to a different clerk.  I asked again.  He pulled the new battery off of the shelf behind him.

Exiting the store, I took deep breaths until I calmed down.  Of course, there was still the xmas music. Where is Bad Santa?

Methylprednisolone Visuals

It is good to know to expect psychotropic-like effects with a gram I.V. of Solu-Medrol (``vitamin P", as they called it back in the day in Pittsburgh).   They don't tell you this.  They sneak it into your IV while you are under in the OR and then when you get to the ICU they talk about some patients getting ICU psychosis.  Hey man, you mixed the kool-aid!   So this time I new what to look for.

I got alternating bright green and red fluorescent lettering on the white wall across from my bed in some strange alphabet that I could not read.   Mostly I got images of movement-- shifting sands or swirling worms or snakes.  I knew what I would find in the snakes, and sure enough the skulls were there underneath.  But it wasn't all scary stuff.  I fell asleep listening to Beethoven's ninth, and on the last vocal note in the fourth movement I awoke to a startling bright white field of vision that remained with or without my eyes closed.  Returning to the main theme of the 4th movement, I saw a crowd of people walking away from me.  (I confess this is probably a memory of the funeral scene of the movie Immortal Beloved, but this does not detract from the realism of the vision.)   Another pleasant moment was of being surrounded by women's breasts, sort of like a very crowded version of the cover of Electric Lady Land.   (One pair which were distinctly Meg.)  A clear sign something healthy was going on inside my new liver.

where's the beach?

I an still leaking from the incision and various holes.  Yesterday Meg and I went to target.  I got a cart and headed off for menswear.   Along the way I felt wet and reached under my shirt.  Several large bloody pads hit the ground and I started leaking in the asile.  I quickly scooped up the bloody pads, wiped the floor and tossed the pads into in a trash bin.  Then I headed briskly over to the pharmacy.  Grabbing a large box of sanitary napkins, I ripped it open and started opening up pads and shoving them under my shirt.  Got the leak under control and, placing the open box of sanitary napkins into my cart, I headed off to menswear looking for socks.

in the trash

path report from liver #3 came back.  a new 1 cm tumor was found, very close to the portal vein.  NO invasion into the vein.  So as far as these things go, this is a very good prognosis for the liver cancer.

the fuse was burning, and it was getting down to the very end.

Suxamethonium chloride

The last thing to do before going to the OR is to talk with the anesthetist and sign the consent.  "Do you understand the gravity of this procedure?"  I simply replied yes.  I thought death on the operating table,
death in the ICU,  perhaps a long lingering death intubated and psychotic in the ICU.  I thought about Meg being asked to pull the plug.  YES! I GET IT!!  But any lingering doubts were silenced by the advice from a doctor nearly 30 years ago in Pittsburgh-- if they put you on the list, you better pray they find a liver.  There is no other option for survival.  You better believe, this thing is real. 

One of the scariest movies of all time is called The Serpent and the Rainbow.   This movie is about Haitian zombies which are people who undergo horrific psychological torture while being given muscular paralyzing drugs.

OK, my experience wasn't nearly that bad, and I have not been zombified.  But I woke up after the
transplant operation (like 5 hours of surgery) still under the effects of the paralysis.  I heard loud noises of blowing oxygen and strange voices.  I was intubated which is a terrifying feeling.  I was told if I could squeeze my hands they could remove the breathing tube.  To my horror, I could not move any muscles in my hands or toes or anywhere.  This state lasted probably only a few minutes, but it was an experience I would not want to repeat.

The operation was, according to surgeons, very difficult due to my surgical history.   They were relieved that their part was over,  that I was out of the OR and into the ICU.  There was a lot of (internal and external) bleeding.  My heart beat was strong.

my parachute opened

my first entry with otx 4

it was a bit rough at the beginning waiting for the graft to kick in.  Amanda said maybe the "30 second rule"  would apply to to my old liver lying on the floor.  I was teasing that my hepatologist   Dr. Canabal ( a spaniard)  might have already eaten it.  well the parachute has opened now and I am 1 day out of the ICU and walking around!

heard the squeak

Got the call from Jacksonville very early this morning (4:30).   Lear Jet flies high and is very fast-- only two and a half hours from Albuquerque to here.  Now I am just sitting in a hospital room waiting for
the process to move forward.  So still could be a "dry run".   If it is a go, should happen tonight.  I expect about 8 hours for the operation and will likely end up in the ICU.  Will be on a large dose of  prednisone as well as pain killers.  No important decisions for a few days at least!

Don't know much about donor except matching blood type.   Having some sad thoughts for him/her and family.  I know that I did not cause their death, but don't want to be happy about it either.  I have the
donor to thank for signing the donor card, and all these people who are working hard here on my behalf.

hearing the squeak

In Wallace's Infinite Jest, US and Canadian state officials live in fear of a secret terrorist group of Quebec separatists.  Members of this terrorist group have lost both legs and hence move about in wheelchairs; they are known as the wheelchair assassins.  They may appear handicapped, but they are very good at what they do and are greatly feared.  They can strike at any time;  the only warning the victim has before the attack is to hear the squeak of wheelchair wheels. High ranking state officials live in fear of "hearing the squeak".  
Here I sit in Albuquerque awaiting liver transplant number four.  It can come at anytime, day or night without warning.  When my cell phone rings with a call from Florida it is time.  I fear the moment even as I hope it comes soon, for I know that without the transplant my time is short.  Still, I live in fear of "hearing the squeak".

vorticies

     I pick up the little black bug.  It’s feet start to move violently as it no longer senses the security of the floor.   I watch it kick pathetically, helplessly and then I toss him into the toilet.  He floats on his back.  He continues to kick.  I flush the toilet and watch as the water swirls into a vortex that whirls him around and around and slowly, with each turn pulls him in and down.  But he continues to kick, the faster he swirls the faster he kicks.  He knows he is in danger but there is nothing else he can do.  He does not give up; I watch him kick as he swirls and disappears down the vortex.  

     What kind of vortex have I encountered?  The waters swirl around me and pull me down with tremendous force.  But at the center of my vortex there is a pole.   The pole is smooth and slippery and hard to hold onto, but it prevents me from going under as long as I hang on.  As I look around I can see only fog and darkness in the distance.  I feel only the swirling water and the smooth, slippery pole that I have wrapped my arms around.  By force of will I have managed to distort my arms into flat rubber bands that wrap around and around the pole.  But the water is fast, and I am tired.  How much longer can I hold on?  I close my eyes and become nothing but rubber band arms wrapping the pole. Who can save me?   

    A face appears out of the fog.  It is distorted and angry.  Why is this face so angry at me?  I am just doing my best to hold on.  Gradually I see that the face belongs to my brother.  He is shouting that I should wake up.  He is demanding a response--- “Can you here me?”  Yes I can, but I cannot speak.  Don’t you see that I am using all my strength to hold onto the pole?  If I speak, I know I shall loose my grip.  So I stare, and try to communicate with my eyes.  Yes I am here, yes I hear you, but I cannot answer.  I cannot answer because I cannot loosen my grip.  Gradually his face fades back into the edge of darkness and fog.  I close my eyes.  I become the rubber band encircling and gripping the pole.  All I can do is hold on.  Who can save me?

susy

feeling much better today in terms of energy and alertness.  Woke right up when Dr. Raj started adding more tests.  he made me promise not to leave until he reads the result today's CT.  fasted to 4pm so this was good practice for Yom Kippur.

SUSY is a class of theories that if true would resolve certain theoretical issues in elementary particles.
My group just finished up a search for some SUSY particles and the non-discovery was presented by
my student Marcelo at the SUSY2011 conference at Fermilab.  The dark matter particle that I am looking for at the bottom of various mines would be a totally new kind of matter and might turn out to be a SUSY particle.    So SUSYHUNTER keeps looking, but you can bet he packs a lunch!

where is Jacksonville?

I grew up in Montclair New Jersey, but my parents were in love with Manhattan and we went into "the city" often--- museums, dramatic plays, hot chestnuts from a grubby cart on a cold day.  Later, I would take the 66 bus to the Port Authority on my own.  The bus goes through the  Lincoln tunnel, and from a distance you can see lower Manhattan towering over the  Jersey swampland.  Then there is this really ugly part of the road where all you can see is the broken brown concrete of decaying roads and overpasses.  (You have plenty of time to study this as there is usually major traffic.)  Then, as you round that last 180 degree turn into the tunnel,  you see the city once again.  Now is is close up,
shining over the Hudson.  Bright lights, big city. Your pulse quickens.

Where is Jacksonville?  If you take out a map of Florida and put a dot where every (say) CVS pharmacy is (most conveniently done with google earth)  you will find an enhancement,  an overdensity, in the north east corner of the state.  That is Jacksonville.

just the facts

i got carried away by amanda's encouragement that I write a memoir.  probably best if I keep that private
and keep this blog as more of a health update.

History Lesson

On TV at the hotel in Jacksonville it is sports sports sports, some weather, and all Fox all the time.  Not so different from any hotel anywhere in the US.  Constant exposure to "main stream" US culture makes me think back to my experience-- little things which add up to give me a totally different perspective on the US.  (I say US so as not to be so provincial as to suggest that the US is all of America). 

My brother had tried to warn me.  We were walking home from school, I was in the third grade, and Bruce asked me a question: “If everyone but you thinks something is true, is it possible that everyone is wrong but you?”  No, of course not.  I was the easy going, go along to get along kid and my brother was always making trouble.  These are deep personality traits, but that doesn’t mean we cannot learn.  If everyone says the dog is a cat, does that make it true?  No, I thought, of course not.  But this was an academic question.  Why would everyone say a dog is a cat?  I didn't get it. 

So many years later I still remember Shondra Peobles, the toughest girl in 3rd grade.  She had lost her hair in some kind of fire, and the boys in the cloak room would steal her wig and hide it.  But she always got even on the playground.  I had the privilege, through what was called  “districting” where schools got money from property taxes collected from the local district of going to the school on the (literally) wrong side of the tracks.  Districting kept the poor schools poor and black, and the rich schools white, in what was a supposedly an integrated town.   (Things changed rapidly with force busing and the town taxes were equally divided amongst all the schools.) At least half the school and half my friends were black.  Shondra was black, but she was not my friend.  She had no friends.  She walked home alone every day with her head-up-high attitude. 

It was Washington’s Birthday,  and the teacher was giving the history lesson.  Our founding father, hero of the revolutionary war and our first president.  Maybe the greatest american ever.   I was bored, we heard this every year and I had no doubt it was true.  We learned that  his teeth were wood, the best dentistry of the day.   Then Shondra stood up.  She was out of order!  This was not done in the classroom.  “Sit down Shondra!!”.  But she stood there with her head held high and said, “But George Washington had slaves!”  The class went silent.  We all waited for the teacher to respond.  I had learned my history well and knew this could not be true.  The teacher tried to recover--- “yes, but most of the people had slaves back then”.  The class fell apart.  “Had slaves! We were the slaves!”.   Recess was declared.  The lesson was over.  

That was the moment for me “when the truth is shown to be lies”.

going Borat

Wed morning, very early...

slept like a zombie last night.  my Delta flight Monday was major delayed due to a mechanical problem.  To make my appointment here in Jacksonville, I flew SouthWest (kaching! another $490 bucks) to Tampa, drove thru the night and arrived a my hotel in Jacksonville at 5AM tuesday, in time for my 7AM appointment.  

They did the biopsy. result later today I hope.

Yesterday I had Georgia the "nurse" who picked me up from Mayo first drive me to the airport for my bag before taking me back to the hotel.  I offered  half her 24 hour pay $140 but she said "I usually get $40 for picking people up at the airport".  I gave here $120 and said goodbye .  (her total time, 2pm-6pm).   well bless her heart!!  she kept saying that. was so happy to let her go... if I had heard her utter that phrase one more time I think i would have throttled her!!   for another clue, he loves st augustine... thinks it is "quaint".

wish i had taken a picture.  

dear georgia lady. 

i am most disused of your penchant for saying “well, bless yur heart”.  In Brooklyn NY where I am from we find such a remark as very offensive, as everyone knows that the heart is simple mechanical pump with no feeling.  As everyone also knows, it is the pineal gland that is the seat of goodness and true love.  If the pineal gland becomes hard, this is a very bad sign that you are becoming old and developing an uncaring attitude.  Here we like to say “bless your pineal gland”.  it is for this reason that I cannot have you assist me in my future home care. In closing,  

“bless your pineal, and my god keep it soft”.

Sincerely,  Susyhunter

ps  I should also say to you that your remittance was overly ambitious,  bless your pineal.

Year of the rest assured disposable toilet seat cover

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There is no doubt that I am influenced by David Foster Wallace, more than any other author at the moment.  Infinite Jest gets in your brain and is not coming out.  So I have chosen not to fight his influence, but rather to work under his tutorage to find my own voice. Call this the YEAR OF THE REST ASSURE DISPOSABLE TOILET SEAT COVER. It's 2011, and I am 54. I am in Jacksonville Florida once again shopping for parts in the graveyard. It has been 28 years since liver #3 (not including original equipment) and I am waiting for #4.