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).