Two Months Post Transplant

 Two months after HSCT                April 24, 2015

Limping To and From the Finish Line

   
       Today marks the two month point since Dan's stem cell transplant.  As I've read the blogs of previous CIDP patients who have gone through this process, I recognize pieces that are similar to Dan's experience, but nothing remotely the same.

     In a nutshell, Dan "limped" to the transplant.  What I mean by that is that he was weakening prior to the transplant, even having weekly IVig doses of 55 gr.    Add that condition to the protocol of chemo and rATG,  and he went into a full CIDP relapse, or as he says "crash."  And when he crashes, it is within 48 hours.  So at day +5 he was reduced to total immobility with zero feeling in both feet and hands.  He received a 5 day full loading dose of IVig while in Prentice and since has required additional treatments since coming home.  Unfortunately, we've been struggling with communication and cooperation between his local neurologist and the team at Northwestern, but our hope now is that Dan is finally receiving an agreed upon treatment plan that we hope leads to reducing the inflammation and then weaning him off of the IVig.  Many prayers of thanks are in order for getting us to this point but we continue to pray that the intended goal will be realized.  We know this is a long recovery, but as expressed by others before us, the waiting and uncertainty requires incredible faith in God and the process.

Luca and Kaiser are the best medicine!  No more bald head if you
catch the right light!

     One thing I know for sure is that Dr. Burt, Kaitlyn, and the transplant team are staying on top of things as we continue therapy and required blood work, and when we pose frequent questions of them.  Dr. Burt even called Dan three times on one occasion to resolve an issue and there is no doubt in our minds that he is "hands on" with his patients.  When he said in the past that no two CIDP patients are quite the same, we can only know that he has seen it all.   Even though Dan's experience isn't quite what we expected, we're holding on to Dr. Burt's optimism for an eventual successful outcome.

      So Dan moves forward with the hard work of recovery.  He still has no feeling in his hands and limited feeling in his feet, though that has been slowly improving.  Strength in his legs is returning but upper body strength is still lagging.  Both physical therapist and occupational therapist note improvements as he attends two to three sessions of each week.  He is now able to enter the house by getting up the two front steps by himself.  When the wind isn't blowing us away, Dan is able to walk up the hill of our subdivision using his walker and back for exercise on the days off of therapy.  He no longer requires help to get up out of a chair and isn't limited to sitting in chairs of certain height with sturdy arms.  He's even tempted fate once to walk unassisted across the kitchen for a cookie just out of the oven.  Now that's motivation!

Dressed and ready for therapy with a shirt
from Siesta Key.  Hoping next year to be there
for the Siesta Fiesta Art show.

     If the transplant was the finish line, then I guess it's safe to say our lives are focused on moving from that finish line and on to the next contest which is recovery.   With modifications to routine, we've been able to go to a movie, enjoy family and friends, and frequently get out to eat a few times a week.  A couple days ago Dan looked in the mirror and noted something fuzzy growing on his scalp.  I even got out a ruler to let him know it was nearing a quarter inch long!  So some things are beginning to bare some resemblance to life pre-transplant, no pun intended!

     

                  


       There's nothing better than watching things sprout and grow in the spring.  Hoping that he would have the transplant over the winter, Dan planted hundreds of bulbs last fall to add spring color to the  landscaping in front of our house.  Now that we're home, we've seen tulips and daffodils poke through the soil and are awaiting their colorful blooms.   Adding other perennials by following Dan's expertise, I've become his hands in planting lilies, dahlias, and hasta.  (No hands in dirt allowed!)  So while our plants are establishing roots and growing stronger, I expect the same will occur with the linings of Dan's nerves.  Can't think of a better way to see evidence of his body responding to HSCT!