"You can't say no to me, I'm on anti-rejection meds!"

     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.  Especially with Khadees being otherwise healthy, he said he would expect his body to reject it, since he previously had a normal functioning immune system.  His next biopsy will be this Wednesday, which will tell us if he’s still rejecting the new heart.  We are saying our prayers, crossing our fingers and toes (sometimes eyes) and hoping for good news after the next biopsy.

The anti-rejection meds are immunosuppressants, which will suppress his immune system to prevent rejection, but also means he will have no immune system to fight any sort of illness.  Going forward, we will have to be very careful with exposure to any potential illness.  (Good thing we are stocked up on masks from Covid, right?  He did have a Bane joke the minute masks were brought up earlier today… I mentioned he’s getting back to his normal self, right?)  He also will have to be very careful with foods to avoid any food-borne illnesses (think pregnancy precautions).  Foods are also tasting differently as a side effect of one of the medications, so we are navigating our way through new challenges.  

Khadees said one thing he has learned this week is even though he is doing well and exceeding expectations with his strength and motivation, there are still things out of his control.  There are good days and bad days, and he is focusing on short-term goals and celebrating the small victories.  He is so appreciative of each person that has reached out to him as it is keeping his spirits high.  

We are still keeping our fingers crossed that he will get to go home within the next week.  He is still on the milrinone, and it is being weaned as his body tolerates it.  While we love the amazing team here, he is ready to be at home.  Thanksgiving and Christmas are his favorite holidays of the year, and he wants to be home to celebrate Christmas as a family.  We are praying this all comes true!

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