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.