I’ve been reflecting on why it’s been challenging to write to you in this blog. After Kenny died, I wrote a lot and those words came with relative ease. I leaned into this and it became clear to me that those words flowed because Kenny had died. The most crushing, unimaginable thing had happened. In our life story now, we are pushing hard against this possibility. Writing about it makes it more real. It literally takes my breath away as I type the words.
As we entered the holiday season this year, I’ve been unable to ignore the thought that next Christmas might look very different. I can quickly sink into the darkness that consumed us the first Christmas without Kenny. The experience of our unimaginable loss is sometimes so close it’s hard to breathe. I acknowledge this and move with intention embracing moments of laughter and joy, capturing memories, and holding them close. However, it’s a regular tug at the heart.
Luxury of a hand grenade
In a previous message to you I mentioned the luxury of time. We have been able to monitor the heart health of Kya and Eli since Kenny died in 2010. Kenny died at age 14 and it’s now been 14 years since his death (Oh the irony. We can’t make this stuff up). For the last ten years we’ve known Kya and Eli had this ticking time bomb in their chest.
Sidebar – when things get hard, dark and inappropriate humor is a go-to. You have full permission to smile or even laugh. You wouldn’t believe some of the jokes that are told around here. We are coping the best ways we know how and we also have professional therapeutic support on board, so don’t worry…well, maybe worry a little and check on us from time to time.
Okay, so ticking time bomb…we expected their ‘timers’ to go another 5-10 years before we were discussing heart transplants. But here we are, feeling like we’ve always had this grenade and now the pin has been pulled. If I were an artist, I might capture this by drawing a picture of God with the grenade in one hand and the pin in the other. I don’t believe God is out to destroy us, but I recognize this is all outside our control (you know I really hate this part), and all things are in His hands. I’ll discuss faith more in future blogs, but let’s put a pin in that for now (pun intended).
In the queue
This journey is a roller coaster. It’s a Mission Space – Rock ‘n’ Roller Coaster – It’s a Small World – Tower of Terror – Grandfather’s Mansion – Giant Swings – Fire in the Hole all rolled up in one kind of experience. (I hope you connect to at least one of those thrill-ride references. If not, search YouTube for Disney World or Silver Dollar City for a demonstration). While we feel like we have been robbed of several years in this ARVC disease process, we also have the ‘luxury’ of being forewarned. You might say we are at the end of a long queue. This is not a ride anyone wants to get on, but the ‘luxury’ of waiting gives us time to prepare, especially financially. Sticking with the metaphor, imagine the following as the signs you read as you wait to get on the roller coaster…
Signs in the queue
- ARVC will continue to destroy Kya’s and Eli’s heart muscle and result in cardiac death.
- The only way to extend their lives is through heart transplant.
- Heart transplant cures ARVC, but it exchanges one set of health challenges for another.
- Post transplant, immunosuppressant drugs are required every day, for the rest of their lives. One missed dose can lead to rejection of the new heart.
- The anticipated cost for these medications with our insurance is $500 per month (yes, each month). Without insurance, these medications cost approximately $1,500-$2,500 per month. This is in addition to surgery, hospital stay, weekly doc visits…you get the idea
- At their age, the average life span of a new heart is 15 years. A second heart transplant is likely to be necessary to extend life. This is medically possible.
- One out of seven adult patients and one out of four pediatric patients die while on the waiting list.
Keep breathing
A critical concern is that Kya and Eli can become too sick for transplant. It’s a complicated process with delicate timing to receive a heart transplant when you need it, but before you become ineligible due to declining health and lack of ability to survive the surgery and recovery.
Thank you for hanging with me for this long blog. Thank you for riding this roller coaster with us. Feel free to ask questions and let us know what you want to hear more about. Meanwhile, hug your loved ones tight, laugh together, create moments and build memories!
Learn more
Every donor can save 8 lives and enhance over 75 more: www.organdonor.gov
For more information on heart transplant: https://www.yalemedicine.org/conditions/heart-transplant.org
You write so eloquently i may plagiarized. Due to a medical condition we were unaware of until a couple weeks ago, reevaluation is underway to determine if this condition allows him to remain approved for eligibility. Praying we learn favorably Wednesday morning.
Continue to pray for all of your family Thank you for sharing your very difficult journey and allowing us to
Pray and support you You are all an inspiration to all of us.
My Ham family that I have never even met. There are no words I can offer but I did want to say that you guys are constantly in my heart, and I pray for God’s peace for you all. I am sorry you are going through this.
I remember Kenny being in my class that summer.. I pray for you and your family often.
We remember you too Angie. Thank you for your prayers.
Words come up so short to describe what’s in my heart. You are the most courageous people I know. You live life fully, purposefully, and face each day head on, pushing through grief to grab hold of joy in the moment. You, Eric, Eii, and Kya are rare, magnificent people and we count ourselves very lucky to know you.
Thank you for your heartfelt words. The connection we share is a rare blessing and we are so grateful. The feelings are mutual!