Chapter 2: Now You’re Listed

Filed under: @ 7:41 am

Now you’re listed. You’re registered with a transplant center. Now what?

Just being on a deceased donor list doesn’t mean you’re going to get anywhere very quickly. Kidneys are the #1 transplanted organ in the United States and for a person with O positive blood the average wait time is 3 to 5 years. Your wait time is back dated to the day you started dialysis so for Andrew that meant that when he qualified to be listed in mid 2018 he was already 6 months up on the list.
The two things that are likely to drive a person on the transplant list a little bit round the bend are that you never know where you are on the list and you can de-qualify for transplant at any time.

Not knowing where you are on the transplant list is a fun one.

Basically at any time on any day you could get a call from anywhere in the country saying “Hey! We’ve got a match for you, you’ve got to get to the transplant hospital within the next X hours.” So the transplant center has to have all of your contact information. You have to answer every phone call that comes to every phone number you’re associated with. That’s BUNCHES of fun in the era of scams, phishing, spam calls and phone bots. At work one day I ended up talking to a “Deputy Scott Summers from the Port of Seattle Sheriff’s Department”. I didn’t actually end up talking to him for too long though. For one thing, for those who aren’t comic book nerds, “Scott Summers” is the actual name of Cyclops from the X-Men. The dude who shoots beams of coherent light from his eyes that has to wear ruby crystal glasses to keep the beams of light under control? Yeah. Him. For a second, there actually isn’t a Port of Seattle Sheriff’s Department. They’ve got a police department, but no sheriff. It was probably one of those “you’ve got an outstanding warrant and you can’t go to the police headquarters because they’ll arrest you so pay your fine in gift cards from Walmart” scams. I told the dude so then hung up on him. Since I never ended up arrested I’m fairly certain I was right.

You have to arrange a driver and a backup driver since you can’t drive yourself to the hospital. They recommend that you pack a go-bag.

Being the type of person that I am, I got some solace from writing up an incredibly detailed handbook that could be printed out from any computer that we own about what would need to be done, who would need to be contacted, what paperwork was where, and how and when to feed the cats. But I *hated* being tied to my mobile phone. It’s inconvenient to carry if you’re in a full contact job like veterinary medicine, and I would legitimately have panic attacks if my phone rang when I was in surgery. And the whole “you should have a phone in your bedroom and the ringer should be kept on because a call for a match could come at any time of the day or night” thing was a certified drag. Since we were already in a situation where we were sleeping with Andrew’s dialysis cycler (whose alarm would go off with obnoxious irregularity) and Andrew’s insulin pump (whose alarm goes off much less frequently, but is still annoying), to say nothing of two alarm clocks, to have another potential beeping, shrieking, adrenaline burst inducing thing in the bedroom was not restful.
Neither of us ever did get around to packing a go-bag, but I did have fun explaining to my support staff at work about how, at some random time in the future, I’d be getting a phone call then leaving abruptly. I swear you could see the sparks and smoke coming from ears at that staff meeting.
The chaos that I caused with our head of HR was a lot of fun too.
Me: “Hey! I’m going to need to take a medical leave of absence at some point.”
Her: “No problem! Just let me know how much time you’ll need and when and I’ll get you the paperwork.”
Me: “I know how much time I’ll need, but I don’t know when the leave is going to happen.”
Her: “Well get the paper work done and give us as much advance notice as you can when you know when you’re going to be out.”
Me: “That’s the point. I *don’t* *know* when I’ll need to be leaving and there isn’t going to be any advance notice.”
Her: (static)
Heads of human resources departments are not much on spontaneity.

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