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.