BMT Day +161 Ups and downs … new antiviral strategy … long-term care … tree fruits eaten … a sour taste

A typical week, last week.  Three days in the Day Hospital at the Cancer Center.  Tuesday:  Lab tests, Wound Clinic, BMT Clinic, IV platelets.  Friday:  change of both nephrosotomy tubes to larger sizes due to persistent leakage, lab tests, premedication, IV Cedofovir, IV red cells, IV platelets, Saturday:  IV blood and IV platelets. 

Overall, lower energy level than the previous week.  

A new week, today at the Day Hospital for platelets, IV fluids, IV albumin.  Her blood work showed a good marrow response – WBC, neutrophils, red cells, platelets.  Unfortunately, her kidney function has worsened considerably this past week.  This led to an urgent ultrasound which did not show the feared hydronephrosis – blocked ureters leading to distended kidney collecting system.  We are quite concerned. 

It at times seems like ‘déjà vue all over again’ as Yogi Berra once said. 

New antiviral strategy

The experimental drug CMX 001 was stopped on July 11^th because it was suspected to be the cause of Teri’s acute and confounding confusion.  Unfortunately its discontinuance led to an increased number of > 1,000,000 BK viral copies in her serum indicating a more active infection causing more bleeding into the urine from hemorrhagic cystitis and nephritis, a brighter Buckeye red.  In turn, this bleeding causes loss of red blood cells and consumes platelets that are trying to stop the bleeding leading to more frequent transfusions.  Her hemoglobin dropped to 6.5, as low as it was when she was first diagnosed with leukemia in February 2010. 

So the new anti-BK virus strategy is as follows.  Dr. H. restarted IV cedofovir on Friday July 22^nd as a once weekly IV infusion with pre- and post-probenecid, followed by an IV fluid flush.  She tolerated this regimen in April.  This agent is very closely related to the experimental drug CMX001 (cedofovir plus an added lipid moiety) that was stopped because of the suspected cerebral side effect.  We have definite trepidation about using it and hope it does not lead again to acute dementia.  The premedication probenecid slows the antiviral excretion and keeps the cedofovir level high.  But, it caused significant sedation last time and did so again to a lesser degree this time.  She also began leflunomide, an adjunctive rheumatoid arthritis drug called disease-modifying antirheumatic drugs (DMARDs) that is reported to help fight the BK virus.  The list of potential side effects is impressive beginning with liver injury, which Teri has. 

Travel and travelers

Teri was disappointed to learn from Dr. H. that she could not fly to Vancouver in late August as we had hoped because her unrelenting renal bleeding necessitates frequent transfusions that would be difficult to arrange.  She was happy to find that she will be allowed to go to East Lansing for the weekend of Ben’s white coat ceremony, an initiation rite of passage at medical school.

Last week, Susan (gourmet club) from Columbus cooked while Teri (sister) from Hayward kept the house stocked and clean and Teri moving between stations at the hospital while I was on consult service – quite busy in pediatric ICU and operating room.  Last Sunday, Steve, Mary, Memee and Ray all visited and brought our favorite Vietnamese bun (cold rice noodle salad) from Madison.  Yesterday, Bronze from church did a optician home visit and fixed her glasses and Jodie brought a special multigrain bread from her organic food store. 

Since we no longer have an outside social life … these visitations have become our de facto in home social life. 

Long-term care

We have been remarkably fortunate to have a large and willing village that has provided nearly continuous support since early April, some 3½ months.  After long discussion, it has become evident that once our friends and family end their stays after next week, given Teri’s slow trajectory of recovery, we will need more help.  Teri remains disabled in many aspects … and no longer can be left alone in light of recent events.

With the help of our financial counselor who has gone above and beyond, we have begun to develop new support infrastructure.  We initially engaged our own highly recommended person to come to the house and take Teri to the hospital.  However, to fulfill the requirements for reimbursable long term coverage, we needed a licensed CNA.  That began yesterday.

Tree fruits can be eaten

One gustatory improvement has occurred in the transplant aftermath.  Teri has oral allergy syndrome in which her mouth swells up if she eats tree fruits including raw apples, peaches, nectarines, plums and cherries.  I asked Dr. H. if per chance, given that her immune system is reconstituted, she might have outgrown these food allergies.  He thought she might have and allowed us to try small amounts.  Thus far, she can tolerate apples, nectarines and cherries.  Hey, hey, hey.

A sour taste

Something bizarre occurred several weeks ago.  I just learned that one support individual discarded two of our art pieces, a laughing Buddha sculpture and prayer wheel collected in Tibet.  I’m upset and I’m investigating.