If at First You Don't Succeed . . .

If at First You Don't Succeed . . . .

Blog # 17:  Second HSCT Birthday - February 24, 2017

Happy Birthday Danny!  Two years of success following
your stem cell transplant!

    Never doubt the fact that HSCT often requires two full years of recovery!   

     The last entry to this blog was in February of 2016 and it marked the one year anniversary of my husband Dan's stem cell transplant at Chicago Northwestern with Dr. Richard Burt.  In brief, his recovery at the one year mark showed much greater mobility and a steady but slow improvement in strength.  But there persisted two major disappointment at that time.  One was not having been able to completely get off of IVig infusions.  And because of that fact, Dr. Allen speculated that the transplant was not successful for Dan's CIDP.

Nothing like a couple hours of using the rototiller to
demonstrate recovered strength. 

     When Dan left Prentice in March of 2015, he was in a full CIDP flare, requiring a loading dose of IVig, and several more to follow in the next few months.  The dreaded reality of an unsuccessful outcome was front and center.  In spite of the need for a transfer to the Rehab Institute of Chicago and the need to regain strength and relearn how to walk, Dr. Burt kept reassuring us that it didn't mean the transplant was a failure.  Some patients just couldn't "stop cold turkey," he reminded us.  So Dan's next year included not one, but two failed attempts to wean off of the drugs.  Even so, at the one year mark, Dr. Allen recommended that he attempt to taper at an even slower rate.  His words weren't particularly optimistic.  But for the next 9 months we followed his advice and Dan's infusions dropped 5 grams every 8 weeks, going from 30 weekly to 5 weekly by November.  

    

Sporting a favorite t-shirt and a
full head of hair a year and a half
post transplant.

      Can you imagine how we walked on eggshells wondering what would happen when that final week of 5 grams was complete?  Would he really be able to remain off of IVig?  Even his local neurologist was cautious, but confident, characterizing the taper as "slowly walking to the door and turning the doorknob without waking up the immune system."

    By Thanksgiving Day, Dan had been off of IVig for 10 days and like all the months of tapering, he showed no signs of weakness, in fact his strength in legs and arms had improved.  As the days and months passed, his condition remained stable and we began to look forward to his 2 year check up in Chicago.  Well, at least I did.  

     Once in Chicago in early February, on the morning of the scheduled EMG and both appointments with the doctors, Dan was still fearful of unfavorable results from his blood work and neurological testing.  I tried to be reassuring before leaving the hotel room, but I'm not sure he was buying it.  Two years is a long time to wait for success and in spite of Dan's positive outlook and faith, there still remained that fear that comes with having an unpredictable disease. 

Pilot to CoPilot!
Flying above the Alaskan Range on a trip
to Denali last summer and a landing on a glacier!

     By the end of that day, our experience confirmed once again the power of prayer.  The appointments went well, the tests supported improvement and our conversation with Dr. Allen this time included the words, "You are in medication free remission!"  Needless to say, our prayers continue daily to be lifted up with thanks to a loving God.  Life is now much more flexible as Dan is no longer tied to a weekly schedule of infusions with the visiting nurse.  We've been able to enjoy travel, hobbies, and friends with much less uncertainty. And though Dan still deals with a tremor and nerve pain or discomfort, (which he describes as"buzzing") he remains physically strong, mobile and is able to work part time seasonally. 

      Dr. Burt was right all along.  No matter how severe the CIDP flare following the transplant, it doesn't mean it's the end of the road to recovery.  Dan now holds a notable record among patients in Dr. Burt's clinical trial.  He is the CIDP patient taking the longest, a full 21 months, to be finally free of all medications. So if at first you don't succeed . . . .