The Dookie Family
So many times I’ve heard people say that your life can change in a moment, or everything can change overnight. While it’s easy to acknowledge the truth in this, you never truly realize the reality until you experience it. June 23, we were told Khadees’s heart was failing. Over the next month, he underwent many tests to discover that he had a genetic condition, Left Ventricular Noncompaction Cardiomyopathy, caused by the TTN gene mutation. Genetic counseling was able to tell us that the mutation might not show until the age of 10, so while the kids will undergo genetic testing, we won’t really know anything until they are older. For now, we know their hearts are healthy.
On July 22, he was placed on the heart transplant list as a Status 4. We are thankful to have such a wonderful transplant team, but there are many things about being on the transplant list that no one can prepare you for. While listed, you are told to answer every single phone call that comes to your phone or your spouse’s phone. (I cannot tell you how many extended car warranties we’ve been offered in the last month). Each time the phone rings with a private number or the hospital number, you stop in your tracks, take a deep breath, and say a prayer before answering.
For heart transplants, the transplant team only has 4-6 hours to remove the heart from the donor and place it in the recipient. The call can come at any time, so each night we sleep with the phones on loud. We have many “what-if” plans and scenarios. If the call comes during the day and we have enough time, do we stop by the kids’ school and let them know? We’ve been on the phone and he sees a call come in and will quickly say, “I’m getting a call, I’ll call you back.” Then I sit and wonder, is this THE call? Then we are met with disappointment when it’s not THE call and we go
back to our game of waiting.
No one can prepare you to watch your husband decline each day, some days struggling more than others. At the beginning of June, we went on a cruise, and he was unable to keep up with the kids, couldn’t walk the stairs on the ship, and was just tired. We chalked it up to being out of shape and us having so many things on our plate prior to vacation. When we returned, we had family in town, and life kept going as busy as it usually is. But Khadees was in pain and noticed it getting worse each day. He was experiencing shortness of breath, frequent chest pain, and exhaustion.
Now, he is short of breath very easily, sometimes at rest. Simple tasks or errands take so much out of him. He has a PICC line with a continuous infusion of milrinone to support his cardiac function. He sometimes needs to take breaks walking up the stairs. He can’t work or drive, can’t hold our two-year-old daughter, or do everyday tasks and chores. He wears a life vest at all times and cannot drive or be left alone. Going to a doctor’s appointment or to lunch with friends wears him out so much, it takes him days to recover.
Suddenly, three young children learn the reality of how fragile life can be. Kellan (age 9) and Stella (age 6) are now being asked to understand that their daddy’s heart isn’t working correctly, and that he needs a new heart. He’s sick and can’t play like he used to. Kellan understands a lot, even voices his concern that his grandparents, aunt, or uncle could also have this. (We’ve also realized Kellan is the master of eavesdropping). Stella is trying to grasp what is happening. She asks questions to adults she trusts, usually when they’re alone and unaware of what she will throw at them. “Does my daddy have to die to get a new heart?” or “If my daddy gets a new heart, will he still love me?” We discuss these fears often, constantly reassuring her and giving her simple answers. Alice (age 2) doesn’t understand what’s happening, but she knows that daddy can’t hold her and that so much is changing. However, we have lots of family coming to town to help, and she thinks they are all here to see her... so that is keeping her in very happy spirits!
No one prepares you for the sleepless nights of anxiety, wondering if tonight is the night that we will get THE call? Or, if this will be the last night that Khadees does well and can remain at home? While a transplant offers him a second chance at life and will be the best gift our family could receive, it will come with a list of new potential problems, including side effects from the anti-rejection medications and then the risk of his body rejecting the heart.
No one prepares you for the pressure you’ll feel to keep life as normal as possible, while everything falls apart around you. Get the kids to their activities, work 40+ weeks because our income has been slashed in half (just a year after him returning to work from Covid furlough), take care of Khadees, try to keep everything moving as normal as possible. Each day starts and ends with exhaustion for both Khadees and myself. But each day, we say another prayer and hope for the best. We wait for THE call, pray for the donor family, and pray for the best possible outcome for Khadees and his future heart transplant.