The Story I Never Imagined Telling

 There are stories you picture telling others about, how you met your significant other, your bachelor/bachelorette party (or maybe not!), the days your kids were born, or your first day in your profession.  Lately, I have found that I spend lots of time telling the story of June 2022 and Khadees’s diagnosis.  

Looking back, there were warning signs, but hindsight is always 20/20.  Khadees never tolerated caffeine well, it made his heart feel like it was beating out of his chest, so he never drank it (and still had an unlimited amount of energy prior to this summer!)  He was becoming tired more quickly.  He was having palpitations and chest pain at work.  He was getting dizzy and lightheaded with activity.  Most of this was quickly dismissed and attributed to stress, heart burn, being out of shape, not sleeping well, and so on.

The first week of June, our family went on a quick 5 day cruise.  On the cruise, we had purchased the Ultimate Dining Package, which allowed us to eat at any specialty restaurant for our meals.  (Those who know Khadees, know that he LOVES cruising, and usually would take full advantage of packages like these.)  But this cruise, he was barely able to eat his meals, constantly full, and always in pain (again, chalked up to heartburn).  He was extremely tired (usually, I’m begging for naps while Khadees makes a million friends on the cruise) but this time, he took naps during the day.  He was unable to keep up with the kids when we went to the beach, unable to run and swim with them.  He wasn’t able to walk up and down the stairs, and always opted for the elevator (also out of character for him on a cruise).  

When we came back home, his pain intensified, but he continued to push through it.  We had family visiting, and continued to chalk it up to acid reflux and being out of shape.  He noticed the pain worsened after he ate, which made us think it was potential gallbladder issues.  The day after our family left, he went to the ER to be checked out.  We assumed this would be a quick diagnostic visit, leading to an outpatient surgery to remove his gallbladder.  He later called me to tell me he was in Congestive Heart Failure and being admitted.  

When he first called, I thought he was kidding.  A very bad joke on his part, but he had to be kidding.  The next couple of weeks continued to share light on the messy situation we were in.  His heart was failing, with his ejection fraction at 15-20%.  He was diagnosed with Left Ventricular Noncompaction Cardiomyopathy (say that 10 times fast), which is tied to genetics.  Tests showed this was nonischemic (basically, no blockages in his arteries causing this disorder).  

Khadees started different medications (a man who had never needed daily meds, to multiple meds, multiple times a day).  He was established with the Advanced Heart Failure/Transplant Team.  The original plan was to go home and to see if his heart would improve with medications, but he continued to get worse with each day, regardless of the meds.  This led us to the transplant evaluation.  As of July 22, Khadees has been listed as a Status 4 on the Heart Transplant List.  

He continues on medications (some oral) and on a continuous infusion of Milrinone, which is delivered through a PICC line.  He wears a life vest, with a built in defibrillator, in case his heart enters a lethal rhythm.  He is limited to 1.5 L of fluid a day, 2 grams of sodium.  We are also watching blood sugars.  (Khadees has never been diagnosed with diabetes, but is genetically predisposed to it.)  If his a1c hit 7%, he would no longer be eligible for a heart transplant.  Stress can increase blood sugars, and his body has been in a consistent state of stress, so we are monitoring blood sugars so we can intervene if necessary.  (However, I’m very confident in his diabetes educator… I knew my Certified Diabetes and Education Specialist certification would also serve me outside of my career… just kidding.)  

So, today has been 42 days since he was listed.  “When will he get his transplant?” is a question we are asked often.  We wish we knew.  There is no way to predict how many hearts will become available (heart transplant donors most often come from some sort of tragedy).  His donor will be our hero, offering Khadees another chance of life, to be here with me and our children.