Share. Connect. Love.

Posted 2019-07-09T05:02:24Z

Jul 8, 11:30 pm

Day 1308 of the transplant cycle.  Well it is time again, we drove down to Houston yesterday.  What were we thinking, 4th of July weekend?! Most of the drive was bumper to bumper for hours and that was when we were moving!  But we did make it in one piece which, thank goodness!  Today, Steve had the stitch removed from his right eye from the cataract surgery.  The doctor said that his eye couldn't look any better.  So we are just waiting for the surgery for the left eye at the end of this month.  The only other appointments that he had today were the obligatory blood draw and the follow-up with the GVHD Specialist and the Dermatologist.  Both were very happy with the look of Steve's skin.  No active GVHD, lots of coloration changes but they tell us that is his previous skin pigmentation coming back randomly which is Good News!  In fact they are so happy that we don't have another follow-up for 2 1/2 months.  The GVHD Specialist did lower Steve's steroid dosage to 5 milligram 7 days a week instead of alternating 5 and 10 milligrams during the week. 

Tomorrow, Steve will see cardiopulmonary, cardiology and take a PFT.  They will probably schedule a chest x-ray too.  As Steve has been testing his lungs by going without oxygen when around the house and not exerting, we are hoping that they will confirm that he can be weaned off the oxygen.  In addition, the drain of his pleural effusion is at an every other day routine, but the amount has decreased to a point where we might be able to schedule the removal of the tube.  Tomorrow will tell, so more updates to come.

Stay in the know. Sign up to receive email notifications the moment new Journal entries are posted

Comments (4)

  • Lisa Moreland
    Lisa Moreland sucks, but so glad that is the only part of this post that was crappy! I LOVE all this news, SO happy to hear and pray that all continues to improve and heal. You two are totally amazing about this journey, your strength, determination and resilience need to be shared - it gives others hope & encouragement! I know we still need a dinner/lunch when we are all back in of these days our schedules are all going to click! In meantime, prayers for today and safe (& much improved) travels home!

    one year ago · Reply
  • Ashita

    Sorry that you guys had such a terrible drive but love the updates !!looking forward to seeing you soon 💕

    one year ago · Reply
  • Valerie Kaatz-Hale
    Valerie Kaatz-Hale

    So sorry to hear about that drive but so happy for all the other good news!! Love you, Val

    one year ago · Reply
  • Pat Clancey
    Pat Clancey

    It's not often enough we get to read a mostly positive update. Glad to hear all the good news. Hopefully Steve got to enjoy all the Big Ten baseball college world series excitement, soccer victories, and now he's on to touring France.

    one year ago · Reply