Hunter Thompson

I  am the Hunter Thompson of illness, continuing to function under all sorts of adverse mental conditions, a skill learned the Hunter way in my youth that has served me well through the years.  I kept teaching to the bitter end of 

kidney failure.  I taught my class this morning before my dialysis.

dire wolf

six hundred pounds of sin, the wolf knocked at my door last friday.  kidney failure is almost as bad as liver.   there was a horrible taste, a horrible smell, nausea, confusion.  I couldn’t eat and I couldn’t sleep.  

but there is dialysis, an alternative and it suddenly seemed wonderful

monday I had a permacath line put in my chest and I went home to wait for my first dialysis treatment on tuesday.  one am i woke bleeding, and meg took me to the ER where i bled slowly all night (bad care).  had my first treatment tuesday morning and felt enormous relief.  back to the hospital they plugged theleak.  now, two treatments later i am feeling much better.  

so now it is 3 hours a day, 5 days a week hooked up to a machine.  meg and I are learning to run the

machine ourselves so we can do it from home.  it is very much like running a physics experiment.

just have to get used to the fact that that red stuff flowing in and out is my blood.  

but it is not time take away.  it is giving.

calculus of variations

i am about to start the topic of variational calculus in classical mechanics.   The idea is that you describe motion as a trajectory (path) in time, and you imagine other paths than the one actually followed.   we call this imagined path the varied path “del-x”.   A key idea is the difference between this type of variation and the derivative from ordinary calculus,  usually called dx:   The derivative compares position at different times, where-as the del-x compares positions at the same time. 

What is he difference between dreaming and hallucinating?  Dreams occur in an imagined time-- events can happen as fast or slow as necessary.  in this sense

they are derivative, the time in which they occur is as imagined as the dream itself.   Things can be imagined to happen fast or slow.  Hallucinations, however occur in real time.  They are analogous to the path variations.  As I experienced them, they could not be sped up or slowed down;  they had to be lived through.    In the course of many long hours, they became more elaborate and ritualized.   For example, with my bed sheet as keyboard and mouse I was typing long paragraphs on the wall and ceiling.   I was seeing all the objects in my room as geometric shapes,  then projecting them onto the walls in two-dimensions and trying to draw lines through all the shapes using my mouse.   this would become more difficult as people would bring supplies into my room and leave them.  the holes in my ceiling tiles needed to be organized into patterns.  yes, pattern recognition needed to be done everywhere.  The hair on the head of the nurse become an elaborate pattern recognition problem, deconstructed into various geometric shapes.  mountains and stars appeared in the window that needed to be catalogued.  Over my shoulder, a man was standing on a platform against the wall praying.  And then one night I was talking in great detail about Egyptian astronomy with a doctor from “the institute”  who was able to dazzle me by spinning his arms.   (There was the clock on the wall above the bathroom door).   But the point is it went on and on, in real time.  Which was two weeks, day and night.   Towards the end, reality started to mix in but is was always hard to tell what was real and what wasn’t.  Meg was there, and our friend Susan.   But so was the little girl in the corner that Meg couldn’t see and the family of young Jewish immigrants that came and camped in my room after Meg left at night.  Please leave and let me get some rest!  

But all this in real-time.  calculus of variations.

It’s all in your head, Carl

Of Carl Jung’s red book, this site (http://gnosis.org/redbook/) quotes Jung:

In 1944 Jung suffered a nearly fatal pulmonary embolism and heart attack.  For three weeks he floated between life and death.  During these weeks he had several transformative visions: 

“It is impossible to convey the beauty and intensity of emotion during those visions. They were the most tremendous things I have ever experienced. I would never have imagined that any such experience was possible. It was not a product of imagination. The visions and experiences were utterly real; there was nothing subjective about them; they all had a quality of absolute objectivity.”

Sorry Carl, it’s all in your head.  Hallucinations are a door into your unconscious mind, but anything “collective” comes from what one has learned in life.  There is nothing universal or transformative that is being revealed.   

To all those who try to make more of it than that (prophetic, archetypes, ... ) I suggest doing some mind altering drugs and getting back to me.   That would give you a hint.   What I experienced was way beyond what any mere drug could do.   Active, seeing and hearing hallucinations.  The most intense completely disconnected with reality,  and some lesser that incorporated some aspects 

of reality.

Jerry Intervenes

waking up deaf in my left ear was a real shock.  I visited this ENT doc who told be I would never hear again in my left ear.  

'You won'd like it, but I will tell you how I know.  I dissected cadavers and found that the nerves (in patients who had become deaf from intubation) had been killed by a latent virus."

 What was the number he had dissected?   Was there only one class of such patients?  

 How about seeing if you can measure nerve currents?  I asked. 

 No one at Mayo has heard about the technique developed 20 years ago at LANL of measuring micro-Tesla fields with a SQID helmet and imaging brain currents.  

Imagine my relief when later that very same day I started to pick up a little bit of Jerry in the left ear.  Very faint and off key at first, but it grew louder and

better every day.  I was as if Jerry had personally intervened on my behalf!

hades

dear friends.

on Jan 1 I started triple drug therapy for hepC--  latest antiviral (telaprevir), ribavirin and  and interferon.  They had treated

some 50 liver transplant patients this way at Mayo.  Interferon and hep C both interact in complicated ways with the immune system.

On around the evening of Jan 25 I developed a shaking chill fever. Meg called an ambulance and toke me to UNM hospital where I was put in

the medical ICU.  Some three days later, Meg was unhappy with my care at UNM.  Just as I was slipping into a coma, she got me

on a med-vac flight to Jacksonville, at the last possible moment that I could still be transported.

At Mayo, Jacksonville a team of some 6 doctors and nurses worked on me for 3 hours to stabilize me and then struggled to keep

my blood pressure up over the next 2 weeks.

I hallucinated throughout this period, and for at least a week on and off after I came out of the coma.

I awoke from the coma incredibly debilitated.   Just standing with help was virtually impossible.  My toes on

both feet were frost bitten (from the low blood pressure).   I was deaf in my left ear (seems to be resolving).

Since then, I have been fighting , fighting to come back. A little bit each day.  making steady progress on my recovery no

Everyone tells me how very very sick I was, and how close I came. 

-Michael

septic shock

“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.”


The night of January 29th I got a shaking-chill fever. I had had these episodes a number of times since November, 2011 when I had liver transplant number four. However, this time I was on a triple-drug therapy for hep-C. One of the drugs, interferon, has complex effects on the immune system, both boosting response to the hep-C virus but suppressing other immune responses. Meg and I realized I needed to go immediately to the hospital. Rather than have her take me, I asked her to call an ambulance.

At UNM I was put in the ICU. Despite being in the place for the most seriously ill patients, the attending physician didn't appreciate the severity of my illness. My kidney's had shut down, my blood pressure was dangerously low, my breathing labored. In Meg's medical parlance, I was circling the drain. She was able to get Mayo, Jacksonville to take me as a transfer. By the time the arrangements were made, I was on a ventilator set to Max and "max pressors" to keep my blood pressure up. Mayo warned Meg that it was dangerous to transport me, that I could very well die in transit. She realized that unless I got to Mayo there was no hope. At Mayo a team of six doctors and nurses worked on me continuously for three hours. It took the work of a brillant doctor at Mayo thirty-sic hours to stabilize me.

All this I was to learn much later. The purpose of this memoir is to record what I experienced. After entering UNM, I remember Meg telling me that they wanted to put me on a ventilator. I had expressed my fear of dying this way as a "fate worse than death" many times in the past. She told me to do it for David (our youngest child, then 14). After this I descended into coma/delirium. Why record these bizarre hallucinations? If you are reading this, I must confess it is entirely as personal psychic therapy. I know of no other way to get them out of my head than to write them down. 

on being dead

In my delirium,  I saw a and heard the "test pattern" that they used to play at the end of the television broadcast day... nothing more will ever happen. I am dead.

I didn't actually see this picture.  What I actually saw was a very bright circle with a small black dot  at the center.  And I heard the buzz.   Its interpretation as the end of broadcasting was immediate.

The statement "I am dead" is self-contradictory, since it uses the verb "to be" which obviously you are not if you are dead.   This is an example of the difficulty in conceiving one's own death.  

world of pain

wed evening had three screws put in my hip to hold fractured bone in place.  screws in bone-- feels as bad as it sounds.

oops

MRI last thursday revealed a fractured hip.  Maybe there was some gout inflammation as well, but extreme pain could have just been the fracture.  At any rate, they wanted to put in a pin to stabilize the joint last friday, but instead I kept my travel plans and went to NYC against Drs orders.   Now back in Abq I am going to see an orthopedist this morning.   Meg says the pin insertion is a short operation that likely requires a hospital overnight.  I will have it done at Presbyterian Hospital which has slightly better accommodations than UNM.

Icarus

So Meg and I returned to Albuquerque March 7 with me on IV antibiotics, with plans to come back to Mayo at the end of March (monday, the 26th) for follow-up on my infection.  Back in Albq.  we were super busy with family and house (fridge under warranty broken again, for example) and Meg with finances and me with work.  So a few weeks slipped by very quickly.

I had started my "spring training", doing daily 4 mile walks around the golf course which was refreshingly different from the Jacksonville beach walk,  a few hills and some trees.  Then I added a few short jog sections which reminded me of just how much more difficult running is than walking.  I got a bit more ambitious and started a more determined "run-walk" on the two mile loop around campus.  On the third day of trying the "run-walk" I had to stop the jogging due to some pain in my right leg.  It will be two weeks ago come tomorrow (thursday) that this happened.   The following day, friday, I was experiencing intense leg pain which I gradually came to realize was in my right hip.  By that saturday I was barely hobbling across the living room at an almost imperceptible pace.  I will never forget the look of disbelief David's face as he waited for me to let him in the front door: "Dad, you can't be serious!"  But I was, the pain being near 10 on the 0-10 scale.  I was able to get  the volume down only a notch or two on oxycodone.   Meg took me to the ER saturday afternoon, but there were no obvious broken bones.  Early sunday morning I decided that the only thing that could cause that much pain and not be a broken bone was likely gout, so I started treating it as such.   I dug deeply into a prednisone haze.

Monday the 26th it was back to Jacksonville via air-port wheelchair and then tests at Mayo.  The infection was declared over.   In the meantime, some good news-- the liver looked good on the blood-work and they were thinking about delaying the hep-C treatment.  They wanted to do a liver biopsy to check, and an MRI to check the status of the clotted hepatic vein.  To do the biopsy I needed to come off of the rat-poison and wait for my clotting to return to normal.  These tests were scheduled for this week (yesterday, tuesday April 2 for the biopsy;  today, wednesday for the MRI with a visit with the Attending scheduled for tomorrow).

In a little less pain but under a dense prednisone fog Meg and I returned to Abq this past weekend to be with Jeremy and David.  I was a bit more independent on newly purchased crutches, and the pain less severe.  Then just this past monday AM, back to Jacksonville with Meg who was needed as a caregiver following the biopsy.  (Yes, one of her starring roles, personal physician!)   Today, I had the MRI and Meg is traveling back to Abq for the passover cleaning and search for chametz.(Starring this time as the good Jewish mother.  Have to remember to say the Shabbat prayer for such a wife!)    I will fly directly to NYC on Friday when we all meet at the rental-car at La Guardia--Meg, Jeremy and David from Abq, and Amanda from Kenyon.

Whew.

The hip pain is resolving but still worrisome.   An MRI of the hip is now scheduled for late tomorrow afternoon.   My circumstance is reminiscent of Icarus who was punished for abusing his freedom by venturing to fly too high.

freedom coming our way

We got the blessing of Mayo doctors to return to Abq. until March 26 when I have some follow-up to bacteremia diagnostics.   At that time I presume they will schedule start of Hep-C treatment.  I believe they will want to wait some weeks to be sure I am clear of infections.  So I expect some shorter back and forth trips this spring.

We are packing up and moving out of the condo.  This is a real milestone,  but I am not really in a celebratory mood. We head for the airport with some trepidation due to  our bad experience last time.  I have a very large blue suitcase packed half with medical supplies related to my IV antibiotic and half shalachmonas that Meg is bringing to celebrate Purim including her famous home-made hamantaschen.   I will also carry on my blue Puma gym bag filled with medications, and a lunch-size cooler bag with IV syringes with cold-packs.   Not much in the way of bandages as my surgical wound is closing up nicely (that is the open part; the rest of the incision looks fine, almost the same as it did before #4).

entertain us!

Other than visits to Mayo for blood work,  Meg and I have been free to hang out at the condo.  I have been starting to do my research again (meetings, students, data analysis) much of which can be done remotely.  Meg has been doing financial stuff as well as planning for kids and her own research on the latest for hep-C and such.  We have been doing more cooking and less eating out.

Almost a week ago we went back to the Cummer Museum.  The current exhibit,  "Impressionism and Post Impressionism from the High Museum of Art" was a big disappointment.  Very few worthwhile pieces (all very small), some American wannabes, some unfinished works or studies by the famous impressionists.  Nothing that would hang in a major museum.   Concurrently, however, was a showing of Japanese block prints related to impressionism,  Beyond Ukiyo-e: Japanese Woodblock Prints and their influence on Western Art which did have some works that I found to be excellent.  In particular, was the artist Hiroshige (http://www.hiroshige.org.uk/hiroshige/main/main.htm).  Here is an example:

And amongst the latest Cummer acquisitions were five out of Andy Warhol's "Ten Portraits of Jews of the 20th century".  They were large works, drawn with Warhols stylized simple lines with striking colors (except for Einstein who was mysteriously drawn in black and white).

On tuesday night we went to see the Alvin Ailey dance troupe.  They were very good technically and reasonably accessible to people like Meg and I who do not follow dance.   Took some concentration, but we enjoyed it.  

This coming Sunday we have tickets to see Wynton Marsalis at the big arts auditorium downtown (same venue as the dance).    Not quite the same as when Meg and I had the good fortune to see both Wynton and Branford debut with Art Blakley at the Keystone  Korner in S.F. back in 1982.  Not only was the Keystone small and intimate, but I was drinking a beer.  

meds

I have been out of the hospital since tuesday.  I have a PIC line in my arm for a six week course of IV antibiotic (Daptomycin).   The schedule of meds I must take is rather daunting.

6AM  Vancomycin (for C-diff)

8AM cyclosporine, prednisone,  urisodial, omaprazole, vitamin, zinc, magnesium
Daptomycin, IV push

Noon Vanco

6PM Vanco

8PM cyclosporine, urisodial

Midnight Vanco, Warfarin

plus glucose test with insulin as needed prior to each meal

To cope with this regimen we had to splurge for some fun.   Alvin Aley American Dance Theater, Feb 28 and Wynton Marsalis March 4.

bacteremia

After 4 days home in Albuquerque, late Sunday morning I had a rigor (shaking chill) leading to fever. I had two episodes like this since my transplant but this was by far the worst. Previously, the bug was never found in my blood and therefore was not targeted directly. After starting on broad spectrum antibiotics at UNM hospital, I was still spiking fevers. Rigors through monday night made it my second most difficult night ever, the worst being the night of CMV prior to de-compensating and necessitating my third transplant. The specific bacteria grew out of my blood and was found to be drug resistant in culture. I was started on an antibiotic that would not have otherwise been used.  From Wikipedia:

Daptomycin is a novel lipopeptide antibiotic used in the treatment of certain infections caused by Gram-positive organisms. It is a naturally occurring compound found in the soil saprotroph Streptomyces roseosporus. Its distinct mechanism of action means that it may be useful in treating infections caused by multi-resistant bacteria.

This drug worked in culture and is working in me.  

I was hospitalized in the oldest part of UNM in a tiny room, smaller than your typical college dorm single; very claustrophobic and hard to keep clean.  The toilet was in a closet on the wall that was very cold;  I referred to it as the "out house'.  The C-diff returned with a vengeance, making for frequent out-house visits.  However, the doctors were very good and attentive.  Especially good was a young infectious desease doctor with a wonderfully positive attitude that really helped to lift my spirits.  We were in close contact with Mayo, and UNM and Mayo decided that invasive procedures to diagnose and treat the source of infection in my body were best done at Mayo. So I am writing this from the luxurious Mayo clinic in Jacksonville having gotten here yesterday on my second air ambulance ride.  Meg of course is with me and Jeremy and David are back to plan B in Albuquerque, David with friends and Jeremy holding down the fort until my brother and sister in law return on Sunday (plan A).   Their help has been of the utmost importance and needless to say Meg and I are enormously grateful. 

Meg and  I spent some time at home before all this happened trying to de-clutter the house.  Still the house is relatively small and still cluttered with books and papers and clothes and assorted inherited stuff that we just can't seem to find the time to sort through to throw out the junk.  So new junk piles on top of the old. My brother Bruce and sister-in-law Jeanette always had a spotless, well organized house. Their kitchen was spacious and modern, and the house clutter-free, warm and snug with a small, well groomed and well behaved lap dog.  My house has two big, hairy slobbery dogs, a redone kitchen that has largely fallen apart with cabinets overflowing with two sets of dishes (milchic and fleischic).  It has a leaky roof and is relatively small,  an old (1950's vintage) house which in New Mexico means drafty from uninsulated walls. But hey, it's home and we love it!  With two kids yet to put through prep-school and college on top of all my medical (and related) expenses,  it will have to remain a work in progress for some time to come.  First priority beyond just "staying afloat"  is to redo the roof and second to redo the kitchen properly this time.  (Not that we didn't pay enough the last time!)   As for the clutter, I refer to George Carlin on stuff.  http://youtu.be/MvgN5gCuLac

Metronidazole

So I am taking the antibiotic Metronidazole (Flagyl) for the c-diff.  Listed side effects are:

vomiting; diarrhea; upset stomach; loss of appetite; dry mouth; sharp, unpleasant metallic taste; dark or reddish-brown urine; furry tongue; mouth or tongue irritation; numbness or tingling of hands or feet

So far it is the double whammy of loss of appetite and metallic taste that has got to me.  I keep thinking that only green chile will cut through the metal.  Out here there is little Mexican food, and their "hot" is less spicy than New Mexico "mild", so it has no effect.  If I can get to Albuquerque for a "break" next week I am headed for all the best chile joints like El Patio and The Frontier.  

I am sick of being sick, but there is no other way out, so I just have to keep pushing through whatever they throw at me.  (Are they physicians or tormentors?)   You could say I have to "bite the bullet"-- for now, that is what it tastes like. 

C. diff

I was having gastric symptoms which I thought were due to liver function and Hep-C. My weight was down to 140 lbs which was very worrisome. Turns out I have a bacteria known as "C. diff". Fortunately easily treated by an antibiotic. Here is a bit about this disease (from Mayo online):

Clostridium difficile (klos-TRID-e-uhm dif-uh-SEEL), often called C. difficile or C. diff, is a bacterium that can cause symptoms ranging from diarrhea to life-threatening inflammation of the colon. Illness from C. difficile most commonly affects older adults in hospitals or in long term care facilities and typically occurs after use of antibiotic medications.

I certainly had my share of antibiotics while in the hospital. The weight loss down to 140 lbs means I have lost much of that muscle I have fought to build up after 1983. I remember when moving to Albuquerque (1991) eight year post transplant I could not jog to the end of the block. I kept training. Most days I was either running, working out on the (brutal) stair master, lifting weights, riding my bike. A few years back Jeremy and I hiked to the top of Sandia Crest which is a seven-mile 3000 foot climb. I want to do that again, this time with David.

Even at 140 lbs, I still have visible fat on my thighs and abdomen. I thought the fat would help to pull me through these lean times. Why doesn't my body use it when it needs it? Those mazo balls and chopped liver sandwiches covered with schmaltz I ate as fat kid being stuffed by my mother and grandparents just don't go away!

kitsch

My numbers are stable (actually a bit up today, but I think some fluctuations are to be expected with acute Hep-C.  They are seriously upping my cyclosporine dose since it is still very low, although at this stage they are not too worried about rejection.  So we are sticking with the plan-- getting the cyclosporine level stable and then starting on the three drug cocktail for the Hep-C.

Today Meg and I moved into a smaller condo just down the beach three blocks from where we were.  It is amazing how much junk we accumulated-- medical supplies (lots of bandages!), kitchen and bath stuff that we had to shlep along with our clothes.  The move was actually not as bad as I was expecting, except for the nearly-full jar of jam with the loose lid that emptied itself in the trunk during the three block drive.  Those big disposable pads used in the hospital for soaking up "fluids" came in handy.

The new condo is smaller but certainly adequate.  One problem is that there is not much in the way of useable furniture, the owner having chosen to spend his money on kitsch rather than furniture like a clothes chest and night stand in the bedroom.  There is however, a large ceramic pig on which you can write the dinner menu and some leopard-print stools in the kitchen, and lots and lots of kitsch.

Here is Meg posing with the ceramic pig and showing off the stools.

And here she is showing off a hanging plastic plant.

 For an extended discussion of kitsch in modern culture I suggest Milan Kundera's novel The Unbearable Lightness of Being which is an excellent read anyway.

cyclosporin

My clinical picture looks like acute Hep-C infection.  The assessment is that it is probably not the really dangerous kind (at least for now), but something that should be treatable, kinehora!  

They want to start me on a three-drug cocktail: interferon, telaprevir, ribavirin. Interferon to boost the immune response, teleprevir (just approved in April of 2011) which gets the Hep-C directly and ribavirin which suppresses the mutated Hep-C (that's evolution, baby!). Since teleprevir
interferes with the excretion of my current immunosuppression drug tacrolimus ("fk"), the first step is to change to the older drug cyclosporin.

A little background on cyclosporin from Wikipedia:

Initially isolated from the fungus Tolpocladium infaltum  isolated from a soil sample obtained by Sandoz scientists at Hardangervidda, Norway in 1969...The success of cyclosporin in preventing organ rejection was shown in kidney transplants by Calne and colleagues at the University of Cambridge, and in liver transplants performed by Dr. Thomas Starzl at the University of Pittsburgh Hospital. The first patient, on 9 March 1980, was a 28-year-old woman.

And I was Dr. Starzl's experimental patient number seventy!

still not working

all numbers were dramatically up yesterday and today.   possible that the ballooning angioplasty failed.  had a hard time believing that stretching the thing would be a long term fix, imagining that arteries are fairly elastic.   so I am in the ER right now to have an ultra-sound to see what the resistive indicies look like.