How Full is Your Glass?

Blog #15                                                                                                                 August 24, 2015

How Full is Your Glass?

Enjoying mango daiquiris from a FULL
glass on Arbutus Lake.

     Today marks the 6 month anniversary of Dan's stem cell transplant.  At this time last year, Dan had been spiraling through monthly CIDP relapses.  Having been on monthly treatments of 180 gr., he never quite made it to the next treatment without a crash from which he never fully recovered.  He was hospitalized several times, and infusions became even more frequent and of larger doses.  

     This summer has been a completely different story.  As Dan travels the road toward recovery with a list of goals yet to be realized, I'd still say the positives far outweigh the alternatives.   Let's just say that instead of a glass half empty, I'll describe his glass now as half full.

     A few weeks ago, we traveled to Chicago for the routine blood work and EMG.  Also scheduled were appointments with Dr. Burt and Dr. Allen.  The appointment with Dr. Burt was fairly short and sweet. General questions about his strength and mobility and the typical questionnaires.  The best news was being cleared of some post-transplant medications and released from any of the typical restrictions.  Dr. Allen on the other hand did a much more thorough physical exam including part of the EMG.  All signs showed increasing strength and reducing numbness in limbs.  He even found faint reflexes which haven't been evident for years.  The biggest disappointment to us and Dr. Allen as well is Dan's reliance on weekly IVig infusions.  The initial attempt at a taper had failed so Dr. Allen has recommended that instead of lengthening the interval between infusions, he suggested Dan continue weekly infusion but reduce 5 grams of IVig each month.  We're praying that this slower taper, along with the healing expected over time, will prove to be the key.   

New hair is same color but lots of curls!

     A week after Chicago we met with at Dan's local neurologist who has been supportive of Dan's participation in Dr. Burts study.  His was very pleased with the strength and feeling regained since his appointment three months ago.  He was receptive to Dr. Allen's recommendations for taper.   He acknowledged the same thing spoken by several doctors, that Dan's body responds so well to IVig infusions.   Initially in his CIDP diagnosis there was much relief provided but ultimately became less effective.  It is Dr. Figueroa's opinion that HSCT has once again made his body receptive to the healing effect of IVig.

     Through out this experience, it has become even more apparent that every patient is different in their recovery.  In spite of not realizing all our dreams for the six month point, I'd say Dan has had a great result thus far.  Our glass has been more than half full.  Dan is walking unassisted with minimal balance issues.  His stamina is improved and the feeling in hands and fingers are better with no spasticity.  Yesterday while balancing a stack of dishes and walking to the sink, I reminisced as to how that would have been impossible 3 months ago.  Dan is busy at two part time jobs and can enjoy getting his hands into dirt and plants in the garden.  He's regained all the independence that we so desperately prayed for at the start of the process.  

     There can't be a better example of our joy than the day we attended Germanfest.   We drank beer, cheered the dachshund races, and watched Dan and Megan take a spin on the dance floor.  One can only consider where we'll be at one year.  Our prayers continue for even more healing and dancing!

Roll out the barrel!