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Living Donation Forum / Re: My kidney recipient brother just passed, from Covid
« Last post by Clark on January 16, 2023, 08:06:37 AM »
I hope you're coping well, Elizabeth. I hope it's all right with you that I've added your anniversary to our calendar. If any of the details are incorrect or worded in a way you'd prefer to change, or if you'd rather I take it down entirely, please let me know. Best wishes.
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Living Donation Forum / Re: My kidney recipient brother just passed, from Covid
« Last post by Elizabeth on January 09, 2023, 03:47:07 PM »
Thank u for your reply, Clark.  January 13, would have been our 13th anniversary, he passed on December 13th, one month shy of our 13th anniversary.  I have been looking on the donor buddies site, I had a couple terrific buddies before and after surgery.  I am not seeing anyone, so far, who mentions the loss of their recipient.  I am struggling.  The loss is so very deep, it’s very hard to explain to anyone even in my family, so I keep it to myself.  I am thankful that you are there!  And appreciate any input. 
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Living Donation in the News / OPTN/UNOS: Update Kidney Paired Donation Policy
« Last post by Clark on January 08, 2023, 02:27:26 PM »
https://optn.transplant.hrsa.gov/policies-bylaws/public-comment/update-kidney-paired-donation-policy/


[/size]OPTN/UNOS: Update Kidney Paired Donation Policy


[/size]Background


[/size]Kidney Paired Donation (KPD) is a process that matches one medically incompatible living donor-candidate pair with another, so the donor in each pair is medically compatible with the candidate in the other pair. By exchanging living donors, each candidate can receive a compatible transplant. The OPTN’s Kidney Paired Donation Pilot Program (KPDPP) is a national KPD program that is governed by OPTN Policy 13: Kidney Paired Donation. Some of the requirement in OPTN Policy 13 apply to all KPD programs, not just the OPTN KPDPP program.


[/size]The OPTN Kidney Transplantation Committee proposes a series of minor changes to OPTN KPD policy to make it more clear and improve efficiency of the OPTN KPDPP program. It also includes proposed changes to informed consent that would apply to all KPD programs.
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https://www.wired.com/story/kidney-donor-compensation-market/

Would You Sell Your Extra Kidney?
Each year thousands die because there aren’t enough organs for transplants, and I may be one of them. It’s time to start compensating donors.
DYLAN WALSHBACKCHANNEL JAN 5, 2023

WHEN WE WERE teenagers, my brother and I received kidney transplants six days apart. It wasn’t supposed to be that way. He, two years older, was scheduled to receive my dad’s kidney in April of 1998. Twenty-four hours before the surgery, the transplant team performed its final blood panel and discovered a tissue incompatibility that all the previous testing had somehow missed. My brother was pushed onto “the list,” where he’d wait, who knows how long, for the kidney of somebody who had died and possessed the generous foresight to be a donor after death. I was next in line for my dad’s kidney. We matched, and the date was set for August 28. Then my parents got a call early in the morning on August 22. There had been a car crash. A kidney was available. As with many things in life, my brother went first and I followed.



On a recent long weekend, while grandparents watched my brother’s two kids, he and his wife spent three days together in the wilderness, hiking and camping to celebrate the milestone of his 40th birthday and the return to a world uninflected by the weight of illness. They were back to normal—a euphemism for the completely unexpected. He is, in a way, still waiting on the generosity of friends and family and strangers, as am I. But his clock has been reset. It will keep its own time.
My bell will ring soon, I know, and I will join the crowd on the other side of the ledger, all of us applying friendly pressure to people we know and those we sort of know, pleading, waiting and jostling and clamoring together, assuming, each of us separately, because we must, that we won’t be one of the roughly 4,000 Americans who dies each year for lack of a kidney. It needn’t be such a big number.
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Living Donation in the News / OPTN/UNOS Leadership Invite US Digital Service to Meet
« Last post by Clark on January 08, 2023, 01:47:28 PM »
https://unos.org/wp-content/uploads/UNOSGR-2023-01-04-UNOS-leadership-requests-meeting-with-US-Digital-Service.pdf


[/size]  ..."Last year, UNOS was provided with what was purported to be a draft report from the United States Digital Service (USDS), which drew a wide variety of conclusions about our IT systems. As noted in an Aug. 2, 2022, letter to the HRSA Administrator, we would have welcomed a USDS review of our system, but did not receive notice of this review before, during or after its development, nor are we aware of a final version of the document."...

[N.B.: The referenced "draft report" was leaked to the press in advance of the hearing, leading to wide coverage of the accusations made by both senators and witnesses. I watched this hearing and was left wondering what the truth was as I heard only accusations.]
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https://www.itv.com/news/channel/2023-01-03/how-guernseys-opt-out-organ-donation-system-will-give-precious-gift-of-life

Islander praises Guernsey's new opt-out organ donation system for giving 'precious gift of life’
Video report by ITV Channel TV's Roisin Gauson

An islander who has recently benefitted from a life-saving kidney transplant hopes Guernsey's new opt-out organ donation system will give others the 'precious gift of life'.
Kristy Le Quesne, who works as a Production Specialist at ITV Channel TV in Jersey, had been living with chronic renal failure for the past 15 years.
She joined the organ donation waiting list in June, and was able to have surgery just two weeks later.
Kristy said: "Before the new system came in, it could have been months or years before I got a transplant. With the new system, I got a kidney in a fortnight.
"It made such a big difference. The availability of new organs now because of the new system is making such a difference to people’s lives.
"It’s given me the chance of a second life, it’s given me energy, it’s given me freedom and I’m so grateful for that precious gift I got."
The new law came into force on 1 January, and means islanders will now automatically be registered to donate their organs after death unless they express wishes otherwise.
It's a system that's been running in the UK since 2020.
Guernsey's former President of Health and Social Care, Deputy Heidi Soulsby, said: "It’s been a long time coming.
"There’s been a lot of work put in by a lot of people to get the organ donation scheme in and I’m really delighted.
"It will make a difference for islanders – but the real advantage here is that because we are part of the UK system when it comes to organ donation, not only islanders benefit, but people in the UK."
Dr David McColl, Clinical Lead for Organ Donation Guernsey, says it's important for islanders to have these conversations with their loved ones now.
Dr McColl said: "What I would urge everybody to do, even though we are moving to an opt out system is still to make your decision known to relatives and by registering it with the National Organ Donor Register.
"Despite the fact that there is an opt out system, families will always be spoken to in circumstances where their relative could become an organ donor and they’ll be asked if they know what their relatives views were.
"We always take into account what the families say and we would always take into account what a potential donor’s wishes were."
Although organ donation has given Kristy a second chance, she says she still carries an element of guilt with her everyday.
Kristy said: "The guilt I feel, that someone lost their life to save mine is still overwhelming me. I still struggle with that every day. It’s still something that I can’t cope with very well.
"I really do struggle with the fact that someone died so that I can live and I’m so grateful to that person.
"It’s such, such a precious gift of life that they’ve given me because I would have been dead in a couple of years if they hadn’t done that, and I know that is a fact.
"There are so many people out there who will die if they do not get organs and this change means that those people will now live.
"I cannot tell you just how grateful and appreciative I am to have had that chance to be able to live and get on with my life, be with my family and loved ones and work, it’s just made a huge difference."
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Living Donation Forum / Re: January 2023 Anniversaries on Living Donors Online!
« Last post by Clark on January 08, 2023, 12:03:39 PM »
That's great to hear, Audrey! We hope your husband's cousin is doing well, too! Happy upcoming kidneyversary! Thanks for your kind words!
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Living Donation Forum / Re: January 2023 Anniversaries on Living Donors Online!
« Last post by audrey12 on January 04, 2023, 04:13:12 PM »
Thank you, Clark.  I'm Audrey, 15 years.  My kidney health is excellent, overall health is very good.  Keep up the good work!
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