One Year- A Mixed Bag

 One Year Post Transplant - A Mixed Bag

      Blog #16  -  February 24, 2016

      Today is a memorable day,  February 24, the one year anniversary of Dan's stem cell birthday!   As expected, it's been a year of roller coaster recovery and improvement, but notable for its significant difference from his condition last year.

     It was a great relief to celebrate the beginning of 2016.  This past year has been a challenge, both medically and emotionally.  After successful recovery from Dan's HSCT, he and I enjoyed a great summer and early fall with trips to Mt. Rushmore and New England.   But as soon as we returned home, our quiet summer was sadly turned upside down with the passing of two family members.  The remainder of the year was an endless stream of tasks revolving around estates and loss.  Is it any wonder we looked forward to the start of a new year?  
      As has been the case with several CIDP patients, Dan was one of those that still required infusions after leaving Northwestern.  That was a huge disappointment for Dan.  But following his six month appointment with Dr. Burt and Dr. Allen, he continued to taper his weekly Ivig infusions with success.  Having been on a weekly dose of 55 gr. last May, he now receives weekly infusions of 25 grams.  All other immune suppressant prescriptions have been discontinued and he is only taking 5mg of prednisone, compared to 60 mg. prior to the transplant.  Over the summer and fall he enjoyed working at two part time jobs, had few limitations in mobility, but day to day seemed to have returned to life as usual.  That's the good news.  But then came the point where the story takes a not so positive turn.  

This is the goofiest "granddog" and bud!  Not sure who is
benefitting more from the connection between the two.

     We recently returned from Chicago where Dan completed the one year tests and doctors appointments.  Like every other visit, there was the excitement and anxiety in being a part of a study.  This time Dr. Burt's tests and reports were fine, suggesting that Dan may yet be able to taper off of Ivig in the months ahead.  After the next day's testing, Dr. Allen's impressions were quite different.  First of all, the EMG showed little if any improvement, suggesting that there had been no remyelinating of Dan's nerves.   When Dan reported that his fingers had become more numb since early December, Dr. Allen suspected that this was a sign of the presence of active disease and that the transplant had not been successful for Dan.  In spite of the improvements in his condition and reduction of medications over the last year, the future is still filled with questions and uncertainty.  But then, I guess, when isn't it?
     So it is with some amount of hesitation that I pressed ahead to write this one year blog.   It's never easy when some amount of hope has been squashed, but then I chide myself when I suppose maybe Dr. Allen doesn't know what he's talking about!  The brilliant hipster doctor, as we refer to him, may have gotten this one wrong! I laugh to think about our question directed to him about why the transplant might not have worked, and Dr. Allen's smiled along with his answer, "That's what we're trying to figure out!" I sure have to respect his "tell it like it is" style.  So I guess Dan's path in the study still plays a significant role in the search for answers in the battle against autoimmune diseases.

Enjoying a Sunday morning Bloody Mary.

     In spite of the not so optimistic news, Dan and I left Chicago wondering how things had changed.  We still acknowledge the blessings of our Lord, the improved condition of his health this past year, and a desire to focus on the joys in our life.   I guess there is always that gnawing uncertainty for all patients as to the success of HSCT.  Absolute success?  Failed attempt? or somewhere in-between?   We may not have gotten that home run, but what I can say is that we have had a year of improvements and Dan says he will easily tradeoff the numbness and weakness in his hands for declining infusions.   Who knows where this study will take him, but I know if there are answers for continued treatment, it will be found with this fantastic team of doctors assembled by Dr. Burt.  
     Dan has indulged my plan to drive to Florida for an extended vacation.  This has never been possible before because of the need for weekly infusions, but with the help of his neurologist, Dan gave me the go ahead to research and secure approval for infusions in Florida.  Unbelievably, phone calls led to a connection with an incredibly caring nurse named Stacey, who worked tirelessly to help me get this arranged.  Just this morning we got word that everything is a go!  It's my goal not to let this disease determine things that can't be done, but do all that is possible. 

Filling up the backyard box with corn for
the neighborhoods four legged residents.

So we wait for spring, feed the deer from the woods behind the house, and plan for a busy spring and summer of blooming plants and tending to Grandpa's garden.  At the same time, we will follow Dr. Allen recommendations to slowly taper the infusions until which time Dan notices his condition won't allow going further.  Should the amount be reduced enough, it's possible that the method of Ig could be delivered through subcutaneous injections.  

This time they showed up to nibble on corn before dusk.

We always said that it was the hand of God that led us to Dr. Burt and this study, so I guess we'll trust that the path ahead will continue to be led by His plan.    There's no doubt we'll be down in Chicago next winter for the annual round of tests and assessments.  Dan may just turn out to provide the hipster doc with a key to a "somewhere in-between" result to HSCT.