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.

cautious optimism

Numbers are down which is good. Still have a ways to go before they are low enough to let me leave town, but I'll take what I can get. Fever has been gone since tuesday evening, with no source found. The angioplasty ballooning did some good; how much of a problem there actually was remains unclear. The drain is out and that swamp at least is clean and dry. Meg and I managed to convinced the team that I should be discharged and I will leave the hospital late this afternoon.

What we have is a very murky picture. Numbers have to come further down, close to normal. Hep-C needs to be treated at some point, not clear how urgently. Need to go back on rat poison for some more months to treat the clot. Need pentamidine treatment when the drug comes in. Will need to continue the wound care with honey dressing for "a long time" (month?). Will have blood checked both days this weekend and then tuesday and thursday. We will visit the clinic on thursday when we will re-assess the big picture.

David is coming today to stay for about five days. Meg's cousins Janet and Bill are coming to visit for the weekend. The forecast is for warm weather. So Meg and should get a chance to relax and recoup emotionally.

the new normal

This post is Meg's. She noticed that the Mayo elevators have this fire safety sign in front of the elevators. The figure is calmly and placidly walking away while the fire rages behind. (I searched google pics but could not find this one. In other fire exit signs the figure is running from the fire.) This is the perfect metaphor for our situation. "It's the new normal for us", she says.

thumb down

Another fever yesterday at 5AM.  Back in the hospital on antibiotics.  No source of fever as yet.  Liver function tests were up yesterday and a bit down today.  lots and lots of tests... blood, every kind of imaging.  fortunately, nothing painful for now.  there was one blood culture that has a gram positive bacteria (covered by the IV antibiotic);  might be a false positive skin contaminant;  won't know until it grows out in culture.  They want to do an arteriogram to check for and possibly improve blood flow into the liver, but they will wait another day for antibiotics to do whatever they might be doing.

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. 

what's up

biopsy shows active Hep-C is cause of elevated LFTs.  Had a low energy day-- not sure if this is related. The drain tube feels like I was stabbed in the chest.  doctors plan for now is watch and wait.

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.

civilization, Jacksonville style

We went to the symphony last night which had special guest Joshua Bell.  The orchestra was mediocre and the program was staid.  (Never heard Beethoven's eighth before,  and now I know why.)  Was Bell good?  Who can tell? He only played for 26 minutes (apparently he suffers from weak arms).  Very disappointing.  Like those rock concerts who advertise "special guest"-- you sit through the warm up band, then the main act comes out and plays a set before bringing out "special guest" who plays one song and an encore.  (Bell did play a 10 minute encore).   Went and found this link to get my violin fix: David Oistrakh plays Tchaikovsky Concerto (1st Mov.) Part 1

Today, we did the Museum of Contemporary Art in downtown Jacksonville.   It was Sunday.  Most of downtown was deserted except for the homeless, with all shops and eateries locked up tight.  Even the museum cafe was closed. We found one place open to grab a bite to eat before going to the museum-- a small coffee shop, bookstore combination that was somewhat bohemian and artsy and served "coffee and", as my great aunts used to say.  The museum was three floors of a small, nondescript building that could have been a school with classrooms replaced by open-space galleries on the second two floors.  The first floor housed the cafe and a small shop.  The exhibits on the second and third floors were several temporary photography collections.  They had one excellent Ansel Adams and a few other notable works.  Everything else I could have done without, particularly one of the feature artists who documented heroin addicts in the seventies. The museum was not currently exhibiting any works in their permanent collection (wikipedia claims they have some paintings).   It is associated with the University of North Florida which bought the museum in 2009.  They had a small room featuring current works by faculty.  You are not missing anything.     

So much for trying to lift my spirits.  Monday it is back to Mayo at 8am where I will discuss the game plan for the week.  The agenda includes the appointment with interventional radiology tuesday AM.  They are just one rung down from surgeons on my list of people to avoid.  I am running low on resolve;  I wanna be sedated.

weekend update

Transaminases continue to climb.   Yesterday's MRI showed blood flow in liver is OK (except for clotted vein which we know about).  Fluid is collecting in region of previous hematoma, possibly putting pressure on common bile duct.  Plan is to do liver biopsy tuesday allowing time to stop Warfarin and let my INR drop down to normal (reduce danger of bleeding after biopsy).   This will be done in interventional radiology where they might re-insert drainage tube.   After the biopsy we have not discussed what to do after restarting Warfarin (which takes 3-5 days to effect INR).  I am pretty sure they will want to hospitalize me to put me on IV heparin.   Will know more on monday.

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).