2HeartsAreBetterThan1

We are back home! Back to the craziness that is our lives, but very thankful to be home. I wish I could say that Khadees is feeling great and back to his usual self, but that’s not quite the case yet. He has still had lots of pain, as they had to re-open part of his original incision. He did amazingly well after transplant, home within 13 days and very little pain. This time around, after the pericardial window, he’s feeling it. He feels it when he gets up, lays down, walks around. I don’t want to say we are starting from square 1, because we definitely are not, but these are challenges that he wasn’t expecting. He originally went to the hospital for signs of rejection and possible infection, which is how we discovered the growing pericardial effusion. He’s had ongoing GI upset, which can be from one of the anti-rejection meds, Cellcept. There is an alternative, but it’s expensive and insurance doesn’t like to cover it. So, during his hospital stay, lots of tests were done to ...

  This will be short and sweet, but here is a quick update on Khadees!  He likes to tell people he had no pain after his transplant surgery.  I kindly remind him that he was so drugged, he doesn’t remember the days when he had pain, which is a blessing.  I would much rather him remember no pain, than the worst of it.  Yesterday morning, they took Khadees to the OR to drain and possibly create a window due to the pericardial effusion.  They decided to do a window and 400ml of fluid was drained during the procedure, as well as a chest tube placed for ongoing drainage.  Since then, he has been in immense pain.   Khadees has a high pain tolerance and doesn’t like taking any sort of drugs that can change the way he thinks.  Even pain control after transplant surgery was sometimes a struggle, because he doesn’t want to take something he doesn’t need.  However, he has been in so much pain that he has needed every pain medication available ...

  I’ve been behind on updating.  Up until this week, Khadees has done extremely well.  Even as he deals with the challenging side effects of the medications, he has pushed on.  Some days he walks miles, continues to find small projects around the house, and dreams of going back to work and the future.  There have been small victories that we’ve celebrated.  Last week, Khadees was able to get into Allie’s bed to cuddle with her before bedtime.  Her bed is low to the ground, so previously he has been unable to bend and get up due to the sternal incision.  So seeing her face light up as he came into bed to cuddle with her, was a moment I couldn’t help but smile at.  These moments are the ones that make me smile and thank God the donor for the gift of life they have given Khadees. As for me, my fight or flight response was temporarily put on hold.  For so long, it was my driving factor.  However, with a family of 5, work, and many thing...

Home is Where The Heart is (and that Heart is Home Y’all!) 13 Days after Transplant and he is home!  The last couple of weeks have been such a blur, but Khadees was able to say goodbye to our healthcare team today and come home to a house of super excited little ones!  Allie’s voice screaming “Daddy!” as Khadees walked into the door will forever be etched into my brain as a happy memory. The biopsy and heart cath from Wednesday showed that he is at a 1R (versus the 2R he had before).  They said a 1R is mild rejection or could even be inflammation, so they will continue the course of his current anti-rejection meds.  His medication regime is on another level, as it consists of many different medications, different doses, given at different times, and some only on specific days of the week.  Each meds comes with its own list of side effects, but most of all, the anti-rejection meds will suppress his entire immune system, which means he will have no defense to figh...

       A few important updates.  First, and most importantly, Khadees’s Epic picture has changed again!  When his humor is back and has the will to make others laugh, I know he’s doing better.  We have been moved back to GT7, where we know and love the medical team.  Khadees has been up and walking laps, even walked up and down 2 flights of stairs.  Over the last 10 days, he has pushed through all the pain and done everything that has been asked of him. Khadees had his first heart cath and biopsy on Wednesday.  Unfortunately, it showed 2R rejection, which means his body is rejecting his new heart.  To combat rejection, the steroids and anti-rejection medications were increased and new meds added.  While this is scary for us to hear, his doctor said he’s not super concerned.  Some forms of rejection, especially within the first year, are normal, and they found this prior to Khadees experiencing any symptoms of rejection....

  For those of you who know Khadees, you know he has a wonderful sense of humor and likes to keep those around him laughing.  When he was on GT7- Advanced Heart Failure Unit prior to surgery, he was bored.  He realized from the patient portal online, he could change his picture in the EMR system (Epic).  Every few days, he would upload a new selfie, each one as silly as the last, with the goal of making anyone who opened his chart laugh.  A couple of days prior to surgery, he changed his profile picture to the one below.  5 minutes after, admitting called him.  “Sir, are you okay?  We saw your picture in Epic and it looks like you’re screaming.”  Khadees had to explain he’s been changing it every few days to entertain the medical staff.  Almost every person who has opened his chart since then have all said the same thing.  “We love your picture in Epic!”  The story has been told many times over the last 3 days.   He h...