Fall 2011

Hi Michael.

Been following your blog.

Holy crap you are through the wringer with this.

I know it sounds corny, but your good spirit and wry style are a real inspiration..

And Meg is a pillar.

Keep on!

Dan

Year of the rest assured disposable toilet seat cover

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.

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.

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.

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".

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.

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!

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.

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.

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.

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?

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.

 

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.

 

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!)

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-, “The World is a Beautiful Place”

 

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.)

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.

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?

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.

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.  

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

--Hunter, Garcia

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.

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).

From Wikiipedia:

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.

Honey

I was seen by the wound nurse today who suggested I use a new dressing containing honey (yes, from bees).  A quick web search tells us that  "For centuries now honey has been used as an effective remedy for wounds, burns and ulcers. In recent years there has been renewed interest in the medicinal properties of honey. Much of this research is being carried out by a team of people working at the Waikato Honey Research Unit, New Zealand."  

According to the manufacturer--- MEDIHONEY® dressings, a unique line of dressings containing Active Leptospermum Honey from New Zealand, has been shown to possess unique qualities that make them ideal for the management of chronic and acute wounds and burns.

Some not so good news today-- my transaminases took a “bump” today.  I also had an ultrasound today that showed some lowering in “resistive indices” measuring blood flow through the liver which suggests the possibility of a blood flow problem.   Possible complications:  blood flow issue due to scar tissue (4 liver transplants!),  result of the process of resolution of portion of liver not being drained due to the clot, an infection in not completely drained hematoma “swamp”,  rejection, liver is responding to hep-C infection ( immunosuppression has been lowered for the past week). They will follow-up on wednesday with an MRI (with contrast).  Tricky part is that treatment for infection is exactly opposite to rejection.

When teaching freshman physics to pre-meds,  I always made a point of doing the section on fluid dynamics (a topic that is now "out of fashion" and often skipped by my colleagues).

Intervention

Just got back from interventional radiological procedure-- biopsy and drain of fluid from early hematoma site.  They will culture the fluid and review the biopsy.  I am happy to have been discharged and be back at the condo, albeit with a tube  draining what, according to Meg, looks like chicken stock into a clear plastic squeeze ball that sucks out the fluid. Yum.

 

Doctor Doom

Thursday's blood draw showed a significant downturn in my transaminases-- the first  since they started going up around the time of my re-admission. This positive news was  dampened my meeting with Dr. "Doom" Y. who described in detail the course of events if I ran into trouble with hep-C. (She did not mention that numbers coming down was a good sign.) The treatment was very hard to take and only worked some of the time.  If hep-C progressed to sclerosing cholangitis I would "loose the graft". Darn, where did I put that thing? I set it down somewhere and now I cannot find it. How clumsy of me! Yes, my fault.  Would I, I humbly inquired, be a candidate for a fifth transplant? Well, graft loss to hep-C in the first year is a contraindication. Plus,  we would never do a fifth. We practically never do a fourth because it is so difficult. So what she meant by "loss of graft" was "you are going to die";  and not, I may add, in a very pleasant way.  She was cold-blooded enough to spell out the hep-C worst case scenario, but not straightforward enough to state the conclusion.  When I met with her pre-transplant back in September, she voiced the same sentiment about the difficulties of a fourth transplant. I think she voted against putting me on the transplant list. Has she bet against me in the Mayo office pool? What to do now? Wait and see.

It has been hard to keep my spirits up.  I will be biting my nails on Tuesday awaiting the results of my next blood test.  I have a picture in my mind of Caesar  in one of those old black and white movies, standing above the crowd at the forum, arm stretched straight out with thumb held horizontal-- thumb up or thumb down? Meanwhile, the drain tube irritates me just enough so I cannot forget it is there.  They will decide Wednesday on whether to pull it or re-position it. 

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. 

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.

 

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).

 

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.

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.