(C) Daily Kos This story was originally published by Daily Kos and is unaltered. . . . . . . . . . . Top Comments: Bringing transplants into the 21st century [1] ['This Content Is Not Subject To Review Daily Kos Staff Prior To Publication.', 'Backgroundurl Avatar_Large', 'Nickname', 'Joined', 'Created_At', 'Story Count', 'N_Stories', 'Comment Count', 'N_Comments', 'Popular Tags'] Date: 2023-04-19 Fair warning: it’s a heavy topic tonight. Feel free to skip to the top comments. I’ve written before about my mother-in-law’s transplant. Because of a donated liver an kidney, she got 16 precious years. She was there for Packrat’s and my wedding (both the “outlaw” wedding and the legal one), and to welcome five more grandchildren into the family (4 by birth, 1 by marriage). She was there to take care of my niece Kali, until she got too sick and Packrat and I took over. And my MIL got endless hours doing what she loved best: playing her piano. Those years were also really hard. Medication kept her body from rejecting the organs, but those same medications suppressed her immune system, so that a cold could be disabling and an infection could send her to the hospital. The hospital stays kept getting longer and closer together, and each time she came out she was weaker, until she couldn’t fight it anymore. If you haven’t seen Amy Silverstein’s wrenching piece in this week’s NYT, I recommend it, but brace yourself. It’s a difficult read. But first, a word from our sponsor! Here at Top Comments we welcome longtime as well as brand new Daily Kos readers to join us at 10pm Eastern. We strive to nourish community by rounding up some of the site's best, funniest, most mojo'd & most informative commentary, and we depend on your help!! If you see a comment by another Kossack that deserves wider recognition, please send it either to topcomments at gmail or to the Top Comments group mailbox by 9:30pm Eastern. Please please please include a few words about why you sent it in as well as your user name (even if you think we know it already :-)), so we can credit you with the find! Silverstein had a heart transplant at age 25, and a second one later. Together, they added 35 years to her life. She followed every protocol around eating, exercising, and medication — and now, with a pristine heart, she’s facing terminal cancer with a destroyed immune system. Medical research hasn’t progressed much around transplants in the last few decades, and in fact they don’t know if protocols should change with time, because they haven’t been studied much beyond 5 years post-transplant. Silverstein has a theory as to why. Because a transplant begins with the overwhelming gift of a donor organ that brings you back from the brink of death, the entirety of a patient’s experience from that day forward is cast as a “miracle.” And who doesn’t love a good miracle story? But this narrative discourages transplant recipients from talking freely about the real problems we face and the compromising and life-threatening side effects of the medicines we must take. This “gratitude paradox,” as I’ve come to think of it, can manifest itself throughout the transplant professional communities as well. Without vigorous pushback, hospitals and physicians have been allowed to set an embarrassingly low bar for achievement. Indeed, the prevailing metric for success as codified by the Health Resources and Services Administration is only one year of post-transplant survival, which relieves pressure for improvement. And with a muted patient cohort, it has been way too easy for federal, state and nonprofit funding sources to overlook transplantation. Compare this with the influence and substantial research funding generated by engaged parents advocating fiercely on behalf of Type 1 diabetes patients — a worthy cause but one whose absolute number of new patients each year is not that different than that of organ transplant recipients. Perhaps this is why life expectancy after heart transplantation is little changed compared to when I received a heart in 1988. As you might expect, everyone in my family has an organ donor card. I’m no longer a youngster, so I don’t know if I’ll get to pass mine on. If I do, I want the recipient to have the longest and best life possible. None of us get immortality, but it’s the next best thing. Top Comments for 4/18/23 and 4/19/23: From PvtJarHead: I’d like to nominate this excellent pun by ProfRobert… From inkstainedwretch: Captain Frogbert replies to Kromaticat on mamarox’s diary "NY woman shot dead..." Gun nuts shoot first, think never never never. From Crashing Vor: AllseeingI on the real promise of AI warfare. From elfling: morbious8’s comment from Hunter’s story about a Republican state senator being against, among other things, “Santaism” and raising the dead: This is the kind of quality comment I live for at Daily Kos,fromabout a Republican state senator being against, among other things, “Santaism” and raising the dead: " Just to be clear, necromancy is the speaking to the dead. Anything else would actually fall under necrothurgy. I know I’m being picky but after 300 years of study in this field, I feel that we deserve to be properly designated. And Eric, your great grandmother says you never call anymore." Top mojo for 4/18/23, courtesy of mik: Top mojo for 4/19/23: 24) Fukk by CReade +74 Picture quilt for 4/18/23, created by jotter, brought back by elfling & the help desk crew: Picture quilt for 4/19/23: [END] --- [1] Url: https://www.dailykos.com/stories/2023/4/19/2164744/-Top-Comments-Bringing-transplants-into-the-21st-century Published and (C) by Daily Kos Content appears here under this condition or license: Site content may be used for any purpose without permission unless otherwise specified. via Magical.Fish Gopher News Feeds: gopher://magical.fish/1/feeds/news/dailykos/