The Difference a Month Makes!

The Difference a Month Makes!

3 Months Post HSCT                        May 27, 2015

     Do you know the reluctance one feels to share a wish or a prayer?  Too often there is the fear of disappointment, should it not be realized.  That was the case for me when I last blogged about Dan's progress a month ago.   I had been hopeful that by this writing, around Memorial Day, Dan would be able to walk unassisted and be driving his car.  What a difference a month makes!  He beat that timeline by at least 3 weeks!

     At the start of Dan's third month post transplant, he began to show marked improvement in balance and strength.  One day his physical therapist suggested that he consider relying less on the walker and practice with the cane.   Before you knew it, the walker was relegated to the closet and he walked with a cane or completely unassisted around the house.  This ability alone gave him the independence to get up and out of bed on his own and get to a standing position from just about any chair in the house.   A couple of weeks ago, he got clearance from Kaitlyn to return to his part time job working on the nursery lot at Mileager's.  He was cautioned to take it easy, (and no hands in dirt!) but has done well on his feet for his two days of work each week, using a cane only as necessary.   

Dan is working again a Mileager's on the
nursery lot.  (Thanks for the photo Mike S.!)

     The other huge improvement has been the restored feeling in Dan's hands, particularly his left hand.  Though still not close to normal, the improved sense of touch has made it possible for Dan to handle buttons, zippers, and belts!  Imagine having to plan your day away from home around whether you need to wear clothes with elastic waistbands because you can't feel your hands!  Even managing elastic was no small task.  Needless to say, we've shared a few hilarious moments in men's bathrooms when required to be away from home.  


     The greatest pleasure I have is when I notice even the smallest changes in things that had been impossible for Dan to do in the previous months.   Even lifting a coffee pot full of water to fill the coffee maker in the morning or walk outside to get the mail or newspaper.  He has no problem drinking out of a normal glass and no longer needs lightweight plastic with a large handle filled only half full.  No more need to "leap frog" something he needs from resting place to resting place in order to get it moved.  His arms and hands are much stronger now and he has little trouble managing general household tasks.  This past Sunday was the first time he walked up the steps into church without using the elevator and we went up to communion together instead of having the pastor come to him in the pew.   Amen!

Walking up the steps outside and then several
times more inside at church.

      Dan says he's now feeling similar to when our daughter and son-in-law were married last October.   He had been on massive Ivig doses to give him the ability to walk Megan down the aisle, but then gradually weakened continually from November up to the transplant in February.  So I guess one could say this is a marked improvement but certainly not what we expect will be the end of improvements.  For one, he continues physical and occupational therapy to build strength and to reach the goal of climbing a flight of stairs.  His infusion schedule is still 55 gr. weekly, the same dose that he received prior to HSCT but even that couldn't keep his CIDP even close to remission.   There must be something else at work here as that same dose is simultaneously paired with great improvement in his condition.  Soon to come, he hopes, is lengthening the time between infusions and ultimately weaning him off them completely.     

Yes, that is a good amount of dark hair!  Not
sure how long that's going to last!

      Last summer was full of terrible relapses and impossible predicaments.  Last July, great friends came to stay with us unaware that they would be needed to help me get Dan in and out of the house and car to get to the doctor or infusions while they were here.  The same friends will be returning again for a visit in about 3 weeks, and we're overjoyed that this visit will be so different.   No wheelchair necessary, but our time together will be filled with happy stories about the improvements in Dan's condition since HSCT.  

     So with optimism we look forward to the coming months of summer and continued growth, not limited to the burgeoning head of hair now covering his formerly bald head!  I've got a new set of hopes and prayers for the next three months including greeting Dr. Burt at Dan's six month check up with even more reasons for a well deserved thank you!   

Tulips that Dan planted last fall just for the purpose of brightening
the front of the house in the spring.