Thread by @RossMartin

This probably falls under #TMI for Twitter. Here’s a (very true) story:

Back in October, I learned about the son of someone at my UU congregation who needed a kidney. Now, a few years ago, I had started a workup at Mayo for a colleague I barely knew who also needed a kidney. /1

The colleague found a better matched donor and my process didn’t get past screening questions and (lots of) bloodwork. When I learned of this new need, though I had only met the mom maybe twice and her adult son not at all, I figured I would offer again. /2

This time, I went through the @JohnsHopkins program. It took time. Lots of paperwork, interviews (to make sure I was uncoerced and of sound mind), more bloodwork, a psych screening, etc. Eventually I got through it far enough to go through major testing. /3

Hopkins is massive. In my role in health information exchange and research, I’ve visited the campus many times. But I hadn’t really appreciated the scale of the mothership — JH Hospital — until my day of testing, which started at 7:30am and ended at 5:30pm. /4

I visited with my transplant coordinator, the surgeon, the nephrologist, and others. I had a cardiac echo, an abdominal and pelvic C/T scan w&wo contast, a kidney ultrasound, and lots more bloodwork. I got my 10,000 steps in traversing the campus without ever going outside. /5

I would have finished about an hour earlier, but I was so exhausted when it came time for my bloodwork at the end of the day, I actually nodded off in the waiting area and missed hearing my name! /6

The experience made me appreciate several things:
- the complexity of the medical decision making driving the living donor process
- the absolute commitment of the transplant team members to the health of the donor
- the power of the Epic electronic health record system /7

- the level of resources required just to get to an eligibility decision
- the level of demand for living donors

I should mention at this point that, a couple of months into the process, I decided to reach out to the intended recipient. I found him on Facebook thru his mom. /8

They had been public about his need for a kidney. It had been a long time in coming — part of a genetic issue. And he was finally at a stage where he needed to prepare for dialysis. He had posted a few stories about the “kitten purring in his arm.” /9

See, when you go on dialysis, a surgeon has to implant an AV fistula — a graft, usually in your arm, between an artery and vein — so they can stick massive needles in you up to four times a week. The fistula enables your expanded veins to take the punishment. /10

The “purring” comes from the disruption of laminar flow in the vessels as the high-pressure arterial blood gets dumped into the low-pressure venous system. It feels odd at first, but you get used to it in time. /11

I went over to the intended recipient’s apartment around the holidays. Let’s call him Thor. Big guy. Seriously into advanced RPGs and an accomplished and committed game master. /12

I wanted to assure Thor that I wasn’t visiting to “size him up” — to judge whether he was worthy to receive my kidney. I told him no one is worthy to receive it. It’s not about him being good enough. For me the calculus was simple: /13

I wanted to live in a world where people who needed a kidney could get a kidney.

And if I wanted to live in a world like that, then I needed to be the kind of person who lived in that world. Yes, there was some risk involved. And yes, it was not at all convenient for me. /14

But it just didn’t feel like that hard a decision to make. I’m a healthy 55 year old and I have two kidneys. I only need one. I’ve never been under the knife, but I’ve wielded it plenty of times (albeit a few decades ago). I understood what I was getting myself into. /15

Thor certainly didn’t need to worry about whether he would “make the cut.” We had a delightful visit. We shared the same mix of geekitude, quirky humor, and intellectual curiosity. I knew we would be friends even if we weren’t contemplating swapping body parts. /16

As I was leaving, Thor shared that three friends had already tried to donate and had been rendered ineligible because of some previously unknown medical issue. But we were both hopeful that this one was going to move to completion. /17

That meeting happened before my Gauntlet of Tests Day. But we ran into each other again just after the Gauntlet. I was hosting my absolute favorite B’more band, @ilyAIMY, at the @UUColumbia One World Coffeehouse. Turns out Thor is one of their biggest and earliest fans. /18

I told him how well everything went. The team felt I was an excellent candidate and, because I am O+ (good for matching to more recipients) & had agreed to be part of the national match program (my donation could start a chain that leads back to Thor), it was all v promising. /19

Later that week, I got the call. My CT scan showed multiple stones in both kidneys. I was not eligible to donate. Not a surprise as I had a stone 20 years ago, but I’d never had a problem since. It was devastating. I asked if I could break the news to Thor. /20

The donor team and the recipient team do not work together except to coordinate a transplant. And they don’t reveal any information to the recipient about donors. But they don’t prevent you from connecting. Thor was, of course, disappointed. But so very grateful for the hope. /21

These past months pulled him through a dark time. He was feeling more positive about the future. Though I wouldn’t be his donor, he was ready for what was to come.

I’m not sure he expected a pandemic to be the thing “to come” (tho I bet one shows in his next RPG campaign). /22

And now, on top of facing dialysis while managing other issues, he has to face the risk of contracting a highly contagious virus that could easily kill him. And he has to face the devastating prospect of finding the perfect donor during the worst possible moment. /23

Our health system can accomplish remarkable things that were unthinkable even 50 years ago. But it still needs heroes. Right now. People who will put the needs of others in front of their own. Not everyone can put themselves out there or even conceive of donating a kidney. /24

But everyone can save a life — even many lives — by staying home. Be a hero. Thank you for reading. /end #FlattenTheCurve

Thanks for the kindness. To be clear: I got a message asking about availability to return to a clinical role. For now, they are just waiting for the surge. Then I might call patients remotely if needed. Let’s hope we don’t get to a place where unlicensed docs have to practice!