TL;DR: My sister got a heart transplant. Please be an organ donor. Click this link: https://www.donatelife.net/
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In December of 2018, my sister’s heart failed. No warning. She was 21 years old.
It was a rare genetic hiccup.
Doctors saved her life that December…but at a cost. Her body became, in a sense, battery powered: to keep functioning, her failed heart needed an LVAD, a “Left Ventricular Assist Device.”
The LVAD sounds like science fiction.
The LVAD—like a pair of headphones—hugs the heart. It “vacuums” blood, compensating for weak pumping.
But the LVAD needs electricity.
The headphones around her heart connected to a cord. The cord extended outside her body through an incision in her stomach; in other words, a cord literally tied to her heart fed out into the world.
Once outside her body, the cord linked to a control box. The control box was powered by two external batteries.
Each battery weighed ~5 pounds. Together, the pair of batteries gave her 16 hours.
In short, every 16 hours, she had to switch to fresh batteries. Or plug herself into a wall outlet.
Or let her heart stop.
The LVAD saved my sister’s life.
On a night when there was no new heart available, yet her own heart finally collapsed, the LVAD was there. She lived with the LVAD for a year after that night. She lived.
For my sister, the LVAD was a “bridge to transplant.” It kept her alive until the perfect new heart became available.
In December of 2019, against all odds, she got the call.
Thirteen hours of surgery later, a new heart started to beat inside her chest. It’s a little loud, she says, compared to the purr of the LVAD’s metal vacuum.
Stay humble.
People have said cruel and stupid things on learning about what an LVAD is: “Hell no” or “I’d rather die.” Don’t say that shit. And don’t believe it with such blind confidence either. People with LVADs are, and I really can’t emphasize this enough, alive.
Be part of the solution.
Standing before the roaring chaos of the world, clutching nothing but pens and pencils, guitars and sketchpads, our library cards, it’s easy to feel helpless. We’re anxious and depressed and often traumatized. Few of us can afford the therapy we surely need.
We do what we can. Donate $5. Volunteer. Run for low-level office if we’re ambitious and stable enough.
But it’s hard. Progress feels vague and intangible and complex.
So here: https://www.donatelife.net/
Go to the secure “Donate Life” website. Type your name, DOB, address, and last four of your SSN. That’s it.
The LVAD saved my sister’s life. For many folks, the LVAD is for life. And to be clear, the LVAD is a brilliant piece of equipment that a lot of people live with for decades, and those people find a ton of joy in that time.
But for those waiting for a new heart…”the call” is everything.
Registering to be an organ donor is instant. Free. It’s a refreshingly easy act of pure goodness and grace. Being an organ donor changes lives.
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My Sister’s Post
2019 has been a long year. It began with a diagnosis of congestive heart failure and a rapid deterioration of health in the hospital from January to March. After I waited for two weeks on the heart transplant list, my ICD shocked me 13 times in one night and forced the placement of a “robotic heart”—an LVAD. The device allowed me to leave the hospital, but I had to run on external battery power day and night for 11 months.
If you ever saw me out with my little backpack, you might’ve seen a white cord running out of the backpack, down under my shirt—that cord fed inside my body, into my failing physical heart. That cord was my entire life, connecting my robot heart to my failed heart. For 11 months, I carried my own life on my shoulders.
From April to December, I recovered from open heart surgery. With the amazing support of my professors at Transy, during that same period, I also completed the classes for two of my college degrees. And finally, during this same period, I waited on the transplant list. I waited for a phone call. I needed a new heart. Yet I had O- blood, the most challenging blood type to find a match for.
On December 12, the day after my last final exam, I got that call.
As of today, exactly 365 days after I arrived at UK for my first of many hospital stays, I am sitting on my couch as a heart transplant recipient thinking of all the amazing people who made this past year possible: friends, family, professors, nurses who became family, doctors, and surgeons.
I’m thinking of my donor, and I’m reflecting on how many thousands of people are still waiting for their call, hoping to feel like I feel right now. This Holiday Season, I have received more gifts and support than I could have ever imagined, but I would like to ask for one more thing.
Sign up to be an organ donor.
Click the link below. It only takes 5 minutes to register. Be the reason that somebody like me gets to come home for Christmas.
Attached is a photo from last night of my dog, Ollie, and myself. I adopted him on July 4th, 2019. Together, we’ve worked through his seizures and my heart problems. Last night, after not seeing me for 12 days, he listened to my new heart without an LVAD. No robot heart. No whirring. Just a real human heartbeat.
Be an organ donor so that more Ollie’s around the world can have these moments.
