The Man in the Chart

  It is a running joke with Khadees’s healthcare team that he is the man who doesn’t match the chart.  There is no way for us to know how long Khadees has been compensating and pushing through all of the symptoms of heart failure.  The man I love is incredibly strong and stubborn, and consistently pushes through his pain and exhaustion.  However, this week he has declined, noticing more symptoms and slowly starting to match the man described in his chart; the man who has an ejection fraction of 13%, Stage IV Nonischemic Congestive Heart Failure, on a continuous IV infusion of Milrinone to support his heart function, and waiting for a heart transplant.

Most days, he spends the majority of the day on the couch.  He was becoming restless and bored of television, books, and video games, but now he doesn’t complain as much.  Weeks prior, he would push to try to help with small things around the house, but now his energy is so low, he is more content hanging out on the couch or napping.  Even rides in the car are exhausting for him.

I’ve previously compared being on the transplant list to a game of Chutes and Ladders, as so much can change so quickly.  We did have a dry run this week, where there was a potential donor heart that didn’t work out.  We are hopeful that he stays somewhat close to the top of the list, and he will get one in the next few months.    

As his wife, it is hard to watch him get worse.  We spoke to his healthcare team this week, and they said his symptoms are expected.  We need to be concerned if/when his dizziness doesn’t go away, his diuretics stop working, his vitals show low MAPS (mean arterial pressures) which means his organs aren’t getting enough perfusion, and when he’s just unable to really get out of bed.  

So for tonight, I ask for prayers and positive thoughts for Khadees.  He continues to say he “feels off” so we continue to hope and pray for him to continue to wait at home and to receive a new heart soon.  (Also, if you want to throw an extra prayer my way, I’ll be hurricane prepping and trying to anchor our trampoline in the next day!) 

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