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#91
Living Donation Forum / Re: Conflicted Donor
Last post by Michael - October 25, 2024, 10:42:14 AM
We don't get many visitors to the message board these days. Most conversations have moved to social media like Facebook. My suggestion is that you post your message in one of the living donor groups such as Living Donors Online and Living Kidney Donors Support Group:

https://www.facebook.com/groups/628615503870540/

https://www.facebook.com/groups/2246296390
#92
Living Donation Forum / Re: Conflicted Donor
Last post by Karol - October 23, 2024, 01:55:27 AM
Wow! That's quite a dilemma. I didn't have a good relationship with my parent and it would've been a very tough decision if I had to make that one. In my case, it was my daughter who needed a kidney transplant. I was not qualified to be a donor. Luckily some very kind strangers stepped up to help her. Maybe you could talk to a therapist or someone you trust. I'm not sure why you got tested in the first place, it's very caring of you but definitely creates a stressful situation for you. Hopefully you get some good responses here. Best of luck.
#93
Living Donation Forum / Conflicted Donor
Last post by Yinyang1029 - October 21, 2024, 12:54:16 PM
Hello everyone.
New here, and I'm sure there are many threads with perhaps similar issues, but I haven't gotten a chance to scroll through all of them just yet.

I (38F) was just approved to be a living donor for my dad (70M) and am the only person in my family who I am aware of who tested and was approved. I don't know who all else opted to be tested, but several people in my family are fairly unhealthy due to high blood pressure or just age, so it was just me who got approved.

Initially, I was somewhat happy, and my dad was happy. But in the last 5 days since learning of my approval, I felt that it behooved me to do more research, simply because the screening process was so overwhelming and so fast (1 week from start to finish of all the testing to getting the approval). I felt that the picture presented to me was one of low risk, easy recovery, and that doesn't necessarily appear to be the case. I've really tried to get the full picture, good and bad, and it's since made me very apprehensive.

This is complicated by the fact that I don't have a great relationship with my dad. He's not a bad person necessarily, but to say I have felt in any way supported by him or that he's been particularly invested in a single thing that I've done in life would not be accurate. He has always been very harshly critical and often condescending throughout my life, and it chipped away over time at any particularly positive relationship. We at this point "talk" in maybe 1 sentence texts every couple of months. Trivial, surface level things. Truly he knows very little about me. Oddly enough, he seems completely unaware of how hurtful that has been or that his traits have led me to not really feel much affection towards him. This poor relationship has really led me to question how I really feel about putting myself on the line for him, and there is a part of me that almost feels a little let down that he seems perfectly fine with me jeopardizing myself for him. If I were a parent, I just don't know that I could do this to my adult child no matter how old they are.

Anyway, that baggage aside, in my heart I can think of many people to whom I would donate to in a heartbeat with no thought to myself, but he is not one of them, but I truly want to forgive and do the right thing. I just have so much unease about it. But even if I did back out, the trouble is he knows I'm a match, my family knows I'm a match, and I am certain I would always be looked down upon (maybe not to my face, but very much behind my back) if I do not go through with this. They know that my team can say I am no longer qualified, just because I asked to opt out, and they would know that is what happened. Not to mention the fact that I feel like a monster for even having these reservations. I feel trapped and I don't know if I could live with myself if he passes away and I did not "step up." There would have been so many more questions I'd have asked in my screening process if I feel I truly would have known what to ask. I don't know what to do or who to talk to.
#94
Living Donation in the News / It Shouldn't Be This Hard to D...
Last post by Clark - October 13, 2024, 03:28:38 PM
https://www.medpagetoday.com/opinion/second-opinions/112374

It Shouldn't Be This Hard to Donate an Organ
— Financial support and incentives can help close the living donor gap
by Ravi K. Mallavarapu, MD


Simon* was stunned to see how exhausted and ill his best friend Andre* looked when he met him after not seeing him for a few months due to work-related travel. Andre had been diagnosed with kidney disease and had to start dialysis treatments during that time. He was looking for a lifesaving kidney transplant but had several years to wait on the national list for an organ. Simon, deeply moved by his friend's situation, offered to donate one of his kidneys, and was confirmed as a match and approved by his healthcare team.

However, he was told by his employers that they could not offer him unpaid leave to donate and recover. He decided to donate anyway and went through the stress of supporting his own family without a salary during that period by taking out a loan. Just what he needed: more stress.
The Need for More Organ Donation
Over 100,000 people
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are on the national transplant waiting list and 17 people die each day waiting for an organ transplant. In contrast to deceased organ donation, living organ donation is when a living person chooses to donate an organ or a part of an organ for transplantation into another person, usually one kidney or part of the liver. In 2023, more than 6,900 people
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were living organ donors. Living donation is a deeply impactful, selfless, lifesaving act of generosity that significantly enhances quality of life for the recipient who has end-stage organ disease.

Given the dire need for more organ donors, we should be reducing barriers to donation, right? That is far from the current reality. Studies have shown that living kidney and liver donors have faced difficulty with health insurance and life insurance
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, including higher premiums and denial of coverage. In many instances, donors need to travel for the surgery and take time off work (often without a paycheck); many people hoping to perform a selfless act for a friend or family member simply cannot afford to donate or risk facing financial toxicity
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.
Policy Reform Can Help
The Affordable Care Act already prohibits health insurance companies from charging higher premiums or denial of coverage based on pre-existing medical conditions. And the Family and Medical Leave Act (FMLA)
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allows eligible employees to take up to 12 weeks of unpaid leave annually for organ donation or other medical reasons. This protects an employee's job and requires their employer to maintain their health insurance. Yet, not all employers are required to offer this coverage, and not all employees are covered. While some states have stronger protections and incentives
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(including tax credits) for living donors, several do not.

A few pieces of legislation have been introduced in Congress to expand access at a national level. The bipartisan Living Donor Protection Act
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, introduced in the Senate in 2021, would add an extra layer of reassurance for those interested in donating, without fear that insurers may deny, cancel, or otherwise impose conditions on policies for life insurance, disability insurance, or long-term care insurance based on an individual's status as a living organ donor. This bill will also clarify that organ donation surgery qualifies as a serious health condition under FMLA, ensuring eligible employees can take time off from work to recover from surgery without fear of losing their job. The Honor Our Living Donors (HOLD) Act
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would require financial aid for organ donation to be determined solely by the donor's income level -- as opposed to the current situation where aid is based on the organ recipient's income. Finally, the Living Organ Donor Tax Credit Act
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would offer up to a $5,000 one-time refundable tax credit to living organ donors who were not reimbursed for the costs related to organ donation by any entity.

To date, these legislative initiatives haven't seen significant movement. Contributing factors may include that only a small fraction of the many bills introduced in Congress each session are passed. Meanwhile, increasing polarization makes working across party lines challenging. But these commonsense measures must be prioritized.
Passing one -- or all -- of these pieces of legislation will make it more likely that people who want to donate an organ will move forward with donation. It will reassure them of the ability to take job-protected, unpaid leave for the surgery and recovery process. No one should go through what Simon went through in the process of helping his friend.
Every organ makes a difference. Let's start by encouraging and incentivizing more living donors.
*Person's name has been changed for privacy.
Ravi K. Mallavarapu is a transplant nephrologist and clinical associate professor at the University of South Carolina School of Medicine in Greenville, South Carolina.
#95
Living Donation in the News / A scoping review of nonmedical...
Last post by Clark - October 12, 2024, 11:31:58 AM
https://pubmed.ncbi.nlm.nih.gov/39190370/

A scoping review of nonmedical barriers to living donor liver transplant
Owen Jones 1, Zhihao Li 1, Christian Tibor Josef Magyar 1 2, Nicolas Goldaracena 3, Blayne A Sayed 1 4, Anand Ghanekar 1, Mark Cattral 1, Nazia Selzner 1, Gonzalo Sapisochin 1

PMID: 39190370 DOI: 10.1097/LVT.0000000000000473

Abstract
This study aims to identify and categorize nonmedical barriers encountered by recipients, donors, and health care providers in the context of living donor liver transplantation (LDLT). Liver transplantation is vital for individuals with liver failure, yet high mortality rates on the transplant waitlist persist. LDLT was introduced to address deceased donor organ shortages; however, its adoption varies widely across regions, prompting the need to explore barriers hindering its implementation. The scoping review employed inclusion and exclusion criteria to identify studies focusing on nonmedical barriers to LDLT in both adult and pediatric populations. Qualitative, quantitative, and mixed-method studies were considered, covering the period from January 2005 to February 2023. The review's search strategy was conducted in the Ovid MEDLINE and Ovid EMBASE databases. Studies meeting the criteria were assessed for their characteristics and findings, which were synthesized into recipient, donor, and provider-level barriers. Among 2394 initially screened articles, 17 studies were eligible for inclusion.

Recipient-level barriers encompassed systemic disparities in access, limited social support, immigration status, and inadequate awareness of LDLT.

Donor-level barriers involved surgery-related risks, recovery time concerns, financial burdens, and religious beliefs.

Provider-level barriers highlighted institutional support inadequacies and specialized surgeon shortages.

The scoping review underscores nonmedical barriers to LDLT across recipient, donor, and provider levels. These barriers include socioeconomic disparities, information gaps, and inadequate institutional support. The findings underscore the need for comprehensive national efforts to raise awareness about LDLT and provide essential financial support.
#96
Living Donation in the News / First Successful Uterus Transp...
Last post by Clark - October 12, 2024, 11:25:44 AM
https://indiaeducationdiary.in/hc-da-usp-marks-milestone-with-first-successful-uterus-transplant-among-living-patients-in-latin-america/#google_vignette

HC Da USP Marks Milestone With First Successful Uterus Transplant Among Living Patients In Latin America

The Hospital das Clínicas of the University of São Paulo School of Medicine has achieved a historic milestone by performing the first successful uterus transplant among living patients in Latin America, a significant innovation in both the field of organ transplantation and reproductive medicine. The procedure was performed in partnership with a Swedish team from the University of Gothenburg and included the participation of specialists from the hospital, including professors Edmund Baracat and Luiz Augusto Carneiro d'Albuquerque.
The transplant was successfully performed using a uterus from the recipient's sister, who had donated the organ after having already given birth to two children. This aspect of the procedure was highlighted by Professor Carneiro, who mentioned the Hospital das Clínicas' long tradition in transplants and the importance of collaboration between teams to perform uterine transplants. In 2017, the hospital had already made history by performing the first uterus transplant from a deceased donor, which resulted in the birth of a healthy baby.
"This was done in conjunction with the group from the University of Gothenburg, three surgeons came from there and, in collaboration with us, here, we performed this case together with the professor, Professor Baracat's team. And it was a long, very meticulous, very careful surgery, but it ended very well. So, we are really happy with this new milestone here for our medicine", he says.

...
#97
Living Donation in the News / Scams Involving Kidney Donatio...
Last post by Clark - October 11, 2024, 10:45:09 AM
https://www.nkfi.org/post/scams-involving-kidney-donation#:~:text=A%20scam%20is%20currently%20spreading,accounts%20posing%20as%20a%20member

Scams Involving Kidney Donation

A scam is currently spreading on social media featuring the National Kidney Foundation (NKF) "Big Ask Big Give" program impersonating the NKF with a convincing copycat website with a similar URL. They are also posting on Facebook groups with fake accounts posing as a member. This fraudulent scheme is misleading patients into thinking they can obtain a kidney by sharing their insurance information and paying certain fees.

Do not become a victim of this deceitful operation that asks you to give your private information, insurance information, pay for fake lab fees and lead you to believe there is a kidney ready and waiting for you. We want to emphasize that the number of scams is increasing. Please refrain from clicking on any links in phishing emails or sharing personal information unless you are absolutely certain of the source.

If you are aware of any scams on any Facebook groups alert the admins so they can take appropriate action.

Ways to Protect Yourself from Online Scams:

In today's digital landscape, online scams have become increasingly prevalent, targeting people of all ages with deceptive tactics. To help safeguard yourself from falling victim to these scams, consider these strategies:
   Limit Personal Information Sharing: Be mindful of the information you post on social media and other online platforms. Scammers often create fake profiles to gather personal details. Adjust your privacy settings to restrict who can see your posts and profiles. Always hide your friend list on social media.
[/color]   Recognize Suspicious Messages: Be alert for phishing emails or texts that appear legitimate but are designed to deceive you into sharing personal information. Watch out for poor grammar, generic greetings, or urgent requests. Always verify unusual requests through official channels.
[/color]   Use Strong Passwords: Create strong, unique passwords for your accounts that combine letters, numbers, and symbols. Avoid obvious choices like birthdays or names. Implement two-factor authentication for added security whenever possible.
[/color]   Stay Informed About Current Scams: Awareness is crucial in avoiding scams. Follow updates from reliable sources like the Federal Trade Commission (FTC) or the Better Business Bureau (BBB) to learn about the latest scams and how to protect yourself.
[/color]   Trust Your Instincts: If an offer seems too good to be true, be skeptical. Offers promising easy money or unrealistically cheap products are often scams. Take the time to investigate before acting on any suspicious offers.
[/color]   If you are unsure of a phone call, always ask who is calling and get contact info form the requester. Don't call back that number, call the number on the back of your credit or insurance card and ask them if they sent you any corresponsive and what was the nature of their call.
By following these guidelines, you can navigate the online world more safely and protect yourself from the risks associated with online scams. Vigilance and awareness are your best defenses in this digital age.

If you have fallen victim to a Scam:
[/color]   Stay Calm: I know it's easier said than done but try not to panic. Take a deep breath.
[/color]   Document Everything: Take screenshots or save any emails/messages you received. This will help if you need to report it later.
[/color]   Change Your Passwords: If you shared any personal info or passwords, it's time to secure your accounts. Update those passwords ASAP!
[/color]   Report It: Don't just brush it off. Report the scam to the platform where it happened (like Facebook, Google, etc.). Contact the Internet Crime Complaint Center www.ic3.gov/ to file a complaint.
[/color]   Check Your Accounts: Keep an eye on your bank and credit card statements for any suspicious activity. If you see anything weird, contact your bank immediately.
[/color]   Talk About It: Share your experience with friends, family and on social media. It can help others avoid the same trap!
Remember, you're not alone in this, and it's always okay to seek help.
#98
Living Donation in the News / Would you give up a kidney for...
Last post by Clark - October 09, 2024, 06:09:39 PM
https://www.today.com/health/news/kidney-donation-compensation-rcna173782

Would you give up a kidney for $50,000? Proposed law sparks debate
A person can donate one of their kidneys and live a normal life, but not enough people do it. Would compensation change their mind, and is it ethical?

By A. Pawlowski

...

Unlike most other organs, a healthy person can donate one of their kidneys and live a normal life. About one-third of kidney transplants are from living donors.
But not enough people are willing to do it, so there's an organ shortage. Between 2010 and 2021, more than 100,000 people died while waiting for a kidney or became too sick to receive a transplant, doctors reported in JAMA Surgery.
"It's a horror that we've allowed this to happen," says Elaine Perlman, executive director of Waitlist Zero, an advocacy group that wants to increase living kidney donation.
"If you're just repeating the same thing again and again and expecting a different result, that's nuts."
The number of Americans who agree to donate a kidney while alive consistently stays at about 6,000 a year, and most give it to someone they love, Perlman says. Only about 300 agree to give it to a stranger.
She's one of them, donating a kidney in 2020 and calling it an "incredibly rewarding" experience, but also "unpaid work." Medical expenses are paid by the recipient's insurance, but the donor must spend time going through tests, surgery and recovery, and deal with out-of-pocket costs.

To get more people to donate, Perlman is urging lawmakers to pass the End Kidney Deaths Act.
The 10-year pilot program would provide an annual $10,000 refundable tax credit for five years — for a total of $50,000 — to living donors who donate a kidney to strangers who've been on the waitlist the longest. That means if you owe $10,000 in federal taxes each year, with this tax credit, you'd owe $0.
People who don't make enough money to pay $10,000 in federal taxes a year would get a check in the amount of the difference over the same time period, Perlman says.
The proposed bipartisan legislation was introduced in the House in August.
"It will work very beautifully for kidney donation. It would just make it easier for people to say yes to donation," Perlman says.
"The End Kidney Deaths Act is a game changer. It will lead us to a place where no American will die while waiting for a kidney."
'Ethically suspicious'
But critics are skeptical it would lead to more kidney donations and are concerned about the ethical implications.
The National Organ Transplant Act of 1984 makes it illegal for living donors to be paid for their organs, other than being reimbursed for expenses.
Tax credits are basically the equivalent of payment — it's just paying in a way that "raises fewer ethical eyebrows," says Arthur Caplan, Ph.D., founding head of the division of medical ethics at NYU Grossman School of Medicine.
"It gets to be a little ethically suspicious when somebody says, 'You can get this tax break and all you have to do is undergo surgery and give up a kidney,'" Caplan tells TODAY.com.
Most people wouldn't be willing to get an operation and remove an organ for a stranger even for a $50,000 tax break, he adds. Caplan is particularly concerned that low-income Americans would be most tempted.
"So there is an issue about: Are you going to exploit the poor to give up a body part and undergo surgery for money?" Caplan asks.
Perlman calls the notion that low-income Americans would donate against their better judgment if there's a tax credit "unscientific and paternalistic." The donation process screens out people who don't understand the risk and don't have the support they need, she says.
Perlman also points out compensation already works for people who donate plasma, sperm and eggs, or become pregnancy surrogates.
But a healthy person giving up an organ is a different category because it's permanent, Caplan says.
"When your kidney comes out, you're left with one kidney," he notes, which puts the donor at risk if something goes wrong with it down the road.
In a statement to TODAY.com, the National Kidney Foundation says it has traditionally had "very strong reservations about direct financial incentives that go beyond" reimbursing kidney donors for their expenses, which is what the proposed law would do.
"The potential for unintended consequences is high, such as the exploitation of people who are financially desperate and the potential to turn kidney donation into a profit opportunity," the foundation says.
It's monitoring the End Kidney Deaths Act, but hasn't taken a direct position on it for now.
When asked for comment, the American Association of Kidney Patients pointed to a 2023 statement, which expresses concern about any new policies that would involve large financial incentives for organ transplants.
Caplan doesn't think the proposed law will pass. He believes a better way is to pass a law that would automatically consider everyone an organ donor when they die, unless they opt out.
Meanwhile, Perlman's dream is to get the End Kidney Deaths Act passed by Thanksgiving.
"It baffles me why we haven't solved this issue. It's overdue," she says.
#99
Living Donation in the News / Re: AITA for not donating my k...
Last post by Clark - October 09, 2024, 05:58:24 PM
Comments are surprisingly on point and tame for Reddit, especially AITA.
#100
Living Donation in the News / AITA for not donating my kidne...
Last post by Clark - October 09, 2024, 05:57:38 PM
https://www.reddit.com/r/AITAH/comments/1ft09pm/aita_for_not_donating_my_kidney_to_my_brother/?rdt=52736

AITA for not donating my kidney to my brother after he bullied me for years?
I (27F) have an older brother, lets call me Jake for privacy reasons (30M). Long story short.. we never had a good relationship. Growing up, Jake was always the favorite. He was good at sports, popular, and got all the attention from my parents. Meanwhile, he made my life hell. He would tease me, eg call me names, and even hit me sometimes. My parents never took it seriously and always said, "That's just how brothers are."
When I moved out for college, I stopped talking to Jake as much as possible. I tried to move on and build my own life. I thought I was finally free of all that crap I went through lol. It turns out now Jake is really sick. He has a kidney problem, and he essentially needs a transplant to survive. I am sad, shocked stressed and confused. My parents called me a few weeks ago and asked if I would get tested to see if I'm a match to donate one of my kidneys to him. They said it's my duty as his sister to help, but after everything he did to me growing up, I am not so sure how I feel. They keep calling me selfish and saying I'm letting my brother die just because I'm holding a grudge. Jake hasn't even apologized to me or reached out. It's like he still doesn't care. Ofcourse he is my brother and I love him but my health isnt the greatest too and I worry about the effects this might have on me if I go ahead with him.. but the thought of losing my brother makess my heart break.
Now I'm feeling guilty. My parents are making me feel like a bad person for not helping, but I don't know if I'm in the wrong.
AITA for not really wanting to donate my kidney to the brother who bullied me?
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