It’s hilarious (in the sobbing in a corner kind of way) that back in November (NOVEMBER!) I thought something was going to happen quickly. I thought that the Eldest having heart failure and aortic insufficiency was going to be addressed in an expedient fashion. Instead, nothing happened until the very end of 2019. True story.
There is so much medical bullshittery that happens in this horrid capitalist system, and I am literally too tired to fully recount it here (another reason to try to do this more regularly) at the moment. We were finally seen by UC Denver Anschutz Campus in Aurora, CO, on 12/30/2019. For the first time in this adventure, we encountered really knowledgeable and empathetic care. It was enough to nearly collapse my outer walls and reduce me to a puddle, honestly.
The main takeaways were as follows: Normally in such cases, there are stop-gap options to try to prolong a patient’s life as long as possible while they wait for transplant. There are two things: pharmaceuticals and what’s called a LVAD, which I’ll explain in a moment. Medication is always the frontline measure, but we have a problem, in that The Eldest is experiencing two separate, unrelated processes that are damaging his heart. One is heart failure, where only 20-25% of the blood that needs to go out to be oxygenated is leaving the chamber, causing the ventricle to enlarge and work harder and harder while achieving less and less. Two is the separation at the artificial aortic valve, which means that oxygenated blood that needs to go out is instead regurgitating back into the chamber. Drugs that help Heart Failure exacerbate Aortic Regurgitation and vice versa.
So there’s little to be done there. The other thing they do is an LVAD (I am too lazy to look up the acronym, you do it) that is a wearable bypass machine that takes the strain off your heart. Unfortunately, they feel that the condition of The Eldest’s heart is too weak to tolerate the surgery to install an LVAD. That means that transplant may be our only option, and that once he starts to deteriorate, our timeline for saving his life will be very compressed. How did I just type that without falling apart? I’m getting very good at falling apart on the inside while remaining composed on the outside. Also I cry all the fucking, time, honestly, I can pretty much carry on while my face leaks all over.
The Eldest is not my only child, he has a 27 year old sister and an 18 year old brother on our side, and so life isn’t just about him. A week before Christmas Eve, the 18 year old learned that a close friend had committed suicide. So I’ve been torn between trying to support and help The Eldest, and the family of the kid who died, and my kid. The funeral felt like a dress rehearsal for losing my own kid, and it has interwoven itself into my general sense of deep sorrow and helplessness.
Anyway. The next step will be to go back to Denver for about a week, where they will put The Eldest through all manner of rigorous, invasive, intense testing, then confer, then tell us if they are going to accept his case for transplant and what priority they will assign him. We won’t have more than a week or two notice before we have to be up there, and it’s likely that The Teenager and my husband will be headed the opposite direction to Ouray, CO, for the Ice Climbing Festival they’ve been attending for four years now.
Everything is uncertain, terrifying, sad, immutable. It’s a tough place to reside for any long period of time, and yet it’s my new address for all intents and purposes.
This, then, will function for me to vomit all my internal garbage that I can’t say out loud without losing it, or wanting to stuff it back in my mouth because no one gets me. You’ve been warned. It won’t be pretty.