The Nonlinear Library EA - A Scar Worth Bearing: My Improbable Story of Kidney Donation by Elizabeth Klugh
May 30, 2024
04:00
Welcome to The Nonlinear Library, where we use Text-to-Speech software to convert the best writing from the Rationalist and EA communities into audio. This is: A Scar Worth Bearing: My Improbable Story of Kidney Donation, published by Elizabeth Klugh on May 30, 2024 on The Effective Altruism Forum.
TL;DR: I donated my kidney and you can too. If that's too scary, consider blood donation, the bone marrow registry, post-mortem organ donation, or other living donations (birth tissue, liver donation).
Kidney donation sucks. It's scary, painful, disruptive, scarring. My friends and family urged me not to; words were exchanged, tears were shed. My risk of preeclampsia tripled, that of end stage renal disease multiplied by five. I had to turn down two job offers while prepping for donation.
It is easy to read philosophical arguments in favor of donation, agree with them, and put the book back on the shelf. But it is different when your friend needs a kidney: Love bears all things, believes all things, hopes all things, endures all things.
Eighteen months ago, at 28-years-old, my friend Alan started losing weight. He developed a distinctive butterfly-shaped rash and became too weak to eat. On February 1, 2023, he collapsed. The level of toxins in his blood were the worst the doctors had ever seen, 24 times the normal level. He shouldn't have been alive. Two years ago, he'd watched his mother die of lupus and now he had the same disease. His body was attacking itself.
Alan:
By April 1, transplant discussions were under way. A living donor would mean avoiding years of relentless dialysis while waiting for a 3-year backlog of deceased donors. Living kidneys are better-quality and longer-lasting too. Having received six units of blood though, Alan had become allergic to 88% of donors.
Regardless, I completed a comprehensive eleven-page history to determine my eligibility. In each of my classes, and at my own wedding, I gave a brief presentation encouraging others to apply as well. Nobody did.
After initial blood work, my blood type was deemed incompatible, but I continued the health screenings to see if I could give indirectly through the National Kidney Registry. There were countless physicals, urine samples, iron infusions, psychological examinations, and dozens of tubes of blood. Throughout the process, Alan, his wife Meg, and I had many conversations that went something like this:
Meg and Alan: "You know you don't have to do this right?"
Me: "I want to... I might still bail though."
Meg and Alan: "We certainly wouldn't blame you if you did."
In January, I got the call that further bloodwork showed that I had a special type of AB+ blood and would be a direct match for Alan. I was elated. Alan cried. We both figured that God wouldn't have made me such an improbable match if I wasn't meant to share.
So, on Tuesday April 9, 2024, we applied lick-and-stick kidney tattoos and drove to the hospital together at 5am. We were wheeled into surgery at 9am and were out by lunchtime. I took the anesthesia harder than most and spent a day longer in the hospital than predicted. I had an ugly scar and was crumpled in pain. I vomited on myself. I couldn't sleep on my side. I couldn't sleep at all. For weeks, every time I coughed or sneezed, it felt like I was going to rip open.
There were times I feared I would never heal.
But that's not the point.
The point is that life persists. Alan is composing symphonies and playing cello and learning Mandarin. He released a new rap album, Back from the Dead, about his experiences. Though still recovering, I'm attending weddings and baking muffins, planting plants, and mending clothes. I started a new role with FHI 360 and am working to eradicate neglected tropical diseases. I will continue to fight for life.
And you can too: Consider donating a kidney, giving blood, joining the bone marrow registry, signing up for post-mortem organ donation, or giving other living donations (birth tissue, liver donation).
Alan ...
TL;DR: I donated my kidney and you can too. If that's too scary, consider blood donation, the bone marrow registry, post-mortem organ donation, or other living donations (birth tissue, liver donation).
Kidney donation sucks. It's scary, painful, disruptive, scarring. My friends and family urged me not to; words were exchanged, tears were shed. My risk of preeclampsia tripled, that of end stage renal disease multiplied by five. I had to turn down two job offers while prepping for donation.
It is easy to read philosophical arguments in favor of donation, agree with them, and put the book back on the shelf. But it is different when your friend needs a kidney: Love bears all things, believes all things, hopes all things, endures all things.
Eighteen months ago, at 28-years-old, my friend Alan started losing weight. He developed a distinctive butterfly-shaped rash and became too weak to eat. On February 1, 2023, he collapsed. The level of toxins in his blood were the worst the doctors had ever seen, 24 times the normal level. He shouldn't have been alive. Two years ago, he'd watched his mother die of lupus and now he had the same disease. His body was attacking itself.
Alan:
By April 1, transplant discussions were under way. A living donor would mean avoiding years of relentless dialysis while waiting for a 3-year backlog of deceased donors. Living kidneys are better-quality and longer-lasting too. Having received six units of blood though, Alan had become allergic to 88% of donors.
Regardless, I completed a comprehensive eleven-page history to determine my eligibility. In each of my classes, and at my own wedding, I gave a brief presentation encouraging others to apply as well. Nobody did.
After initial blood work, my blood type was deemed incompatible, but I continued the health screenings to see if I could give indirectly through the National Kidney Registry. There were countless physicals, urine samples, iron infusions, psychological examinations, and dozens of tubes of blood. Throughout the process, Alan, his wife Meg, and I had many conversations that went something like this:
Meg and Alan: "You know you don't have to do this right?"
Me: "I want to... I might still bail though."
Meg and Alan: "We certainly wouldn't blame you if you did."
In January, I got the call that further bloodwork showed that I had a special type of AB+ blood and would be a direct match for Alan. I was elated. Alan cried. We both figured that God wouldn't have made me such an improbable match if I wasn't meant to share.
So, on Tuesday April 9, 2024, we applied lick-and-stick kidney tattoos and drove to the hospital together at 5am. We were wheeled into surgery at 9am and were out by lunchtime. I took the anesthesia harder than most and spent a day longer in the hospital than predicted. I had an ugly scar and was crumpled in pain. I vomited on myself. I couldn't sleep on my side. I couldn't sleep at all. For weeks, every time I coughed or sneezed, it felt like I was going to rip open.
There were times I feared I would never heal.
But that's not the point.
The point is that life persists. Alan is composing symphonies and playing cello and learning Mandarin. He released a new rap album, Back from the Dead, about his experiences. Though still recovering, I'm attending weddings and baking muffins, planting plants, and mending clothes. I started a new role with FHI 360 and am working to eradicate neglected tropical diseases. I will continue to fight for life.
And you can too: Consider donating a kidney, giving blood, joining the bone marrow registry, signing up for post-mortem organ donation, or giving other living donations (birth tissue, liver donation).
Alan ...