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Living Donation Forum / Re: New to the forum
« Last post by Fr Pat on September 11, 2021, 07:53:22 PM »
Welcome! I donated non-directed 19 years ago and am doing fine. As Michael has already helpfully noted, there is a lot more activity these days on the FaceBook pages of "Living Donors on Line", and "Living Kidney Donors Support Group", etc. Fewer donors check in here now.
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Living Donation Forum / Re: New to the forum
« Last post by Michael on September 09, 2021, 07:49:03 AM »
Welcome! Be sure to read through the educational material (https://livingdonorsonline.org/kidney/) and ask any questions you may have. We also have stories ("Experiences") of people who have already donated, and we have Living Donor Buddies, in case you'd like to talk with someone who has already gone through the process.

If you are on Facebook, we also have a group there: https://www.facebook.com/groups/livingorgandonors/

Best of luck!
3
Living Donation Forum / New to the forum
« Last post by Pia721 on September 08, 2021, 10:09:43 PM »
Hi I am new here and just began the process of becoming a potential living Kidney donor through the National Kidney Registry. I already selected a transplant center and am waiting for them to contact me.

Looking forward to learning lots from everyone here. 
4
Living Donation Forum / Re: Mourning the Loss of Your Kidney Recipient
« Last post by tjhurley on August 18, 2021, 04:01:54 PM »
What have we learned so far? This medical summary statement says it best.
*******
The poor survival outcomes in these patients is a cause for great concern since they are getting a transplant as curative-intent and then to be dying from a secondary cancer, which can be potentially prevented or screened for is worrisome.
*******

One of the problems is that preventative screening for colorectal cancer usually doesn't happen until age 50. Even in the non-transplant younger population, by the time colorectal cancer is discovered it is usually in later stages.

In most medical studies, the history of kidney transplant patients whose colorectal cancer is discovered later stage is 0% survival at the 5 year mark.  Stranger yet, the younger the patient, the harsher the survival rates.

Despite 12 rounds of chemo last year, his cancer has spread which moves it to stage 4.
5
As I know some people are looking for this study I'll bounce it up to the top again.
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Living Donation in the News / Outcomes of living liver donor candidate evaluations
« Last post by Clark on August 04, 2021, 03:21:22 PM »
https://pubmed.ncbi.nlm.nih.gov/34342054/


Conclusions:
A comprehensive national registry is feasible and necessary to better understand candidate selection and long-term outcomes. As a result, the US Health Resources and Services Administration asked SRTR to expand the pilot to include all US living donor programs.
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https://variety.com/2021/tv/news/selena-gomez-the-good-fight-kidney-transplant-1235034117/amp/


Selena Gomez, celebrity recipient, calls out inappropriate use of her health history as material for media content.
8
https://kidney360.asnjournals.org/content/early/2021/07/01/KID.0003052021

New LKD research in which the authors suggest transplant centers use age-based GFR as cutoff for potential donors. Should the 2017 KDIGO recommendations be revisited?

Abstract
Living kidney donors incur a small increased risk of end-stage kidney disease (ESKD), of which pre-donation glomerular filtration rate (GFR) is an important determinant. As a result, kidney function assessment is central to the donor candidate evaluation and selection process. This article reviews the different methods of GFR assessment including estimated GFR, creatinine clearance and measured GFR, and the current guidelines on GFR thresholds for donor acceptance. Estimated GFR obtained using the 2009 Chronic Kidney Disease Epidemiology Collaboration equation, while the best of estimating estimations, tends to underestimate and has limited accuracy, especially near normal GFR values. In the United States, the Organ Procurement and Transplantation Network policy on living donation mandates either measured GFR or creatinine clearance as part of evaluation. Measured GFR is considered the gold standard, although there is some variation in performance characteristics depending on the marker and technique used. Major limitations of creatinine clearance are dependency on accuracy of timed collection, and overestimation as a result of distal tubular creatinine secretion. GFR declines with healthy aging, and most international guidelines recommend use of age-adapted selection criteria. The 2017 Kidney Disease: Improving Global Outcomes Guideline for the Evaluation and Care of Living Kidney Donors diverges from other guidelines and recommends using absolute cut-off of <60 ml/min/1.73m2 for exclusion and of ≥90 ml/min/1.73m2 for acceptance, and determination of candidacy with intermediate GFR based on long-term ESKD risk. However, several concerns for this strategy exist, including inappropriate acceptance of younger candidates due to underestimation of risk, and exclusion of older candidates whose kidney function is in fact appropriate for age. Role of cystatin C and other newer biomarkers, as well as data on impact of pre-donation GFR on not just ESKD risk but also advanced chronic kidney disease risk and cardiovascular outcomes are needed.
9
https://www.journal-of-hepatology.eu/article/S0168-8278(21)01948-6/fulltext?rss=yes


Performance of the model for end-stage liver disease score for mortality prediction and the potential role of etiology
Gennaro D’Amico, MD
Luigi Maruzzelli, MD
Aldo Airoldi, MD
Pietro Pozzoni, MD
Agostino Colli, MD
Luca Saverio Belli, MD

Published:July 29, 2021DOI:https://doi.org/10.1016/j.jhep.2021.07.018

Highlights

Discrimination of MELD is widely reported as fair to good, although its calibration is still unclear.

In two cirrhosis cohorts we found barely acceptable c-statistics, significantly worse in patients with non-viral etiology

Calibration was largely unsatisfactory with the Mayo and UNOS MELD versions

Validated recalibrations of MELD-Mayo and UNOS versions are presented which allow reliable predictions for clinical practice.

Age, albumin and ascites as indication to TIPS are candidate variables for MELD-TIPS updating

Abstract

Background & aims
Although discrimination of the model for end stage liver disease (MELD) is generally considered acceptable, its calibration is still unclear. In a validation study, we assessed the discrimination and calibration performance of 3 versions of the model: original MELD-TIPS, used to predict survival after transjugular intra-hepatic portosystemic shunt (TIPS); classic MELD-Mayo; MELD-UNOS, used by United Network for Organ Sharing (UNOS). Recalibration and model updating were also explored.

Methods
776 patients submitted to elective TIPS (TIPS cohort), and 445 unselected patients (non-TIPS cohort) were included. Three, 6 and 12-month mortality predictions were calculated by the 3 MELD versions: discrimination was assessed by c-statistics and calibration by comparing deciles of predicted and observed risks. Cox and Fine and Grey models were used for recalibration and prognostic analyses.

Results
Major patient characteristics in TIPS/non-TIPS cohorts were: viral etiology 402/188, alcoholic 185/130, NASH 65/33; mean follow-up± SD 25±9/19±21months; 3-6-12 month mortality were respectively, 57-102-142/31-47-99. C-statistics ranged from 0.66 to 0.72 in TIPS and 0.66 to 0.76 in non-TIPS cohorts across prediction times and scores. A post-hoc analysis revealed worse c-statistics in non-viral cirrhosis with more pronounced and significant worsening in non-TIPS cohort. Calibration was acceptable with MELD-TIPS but largely unsatisfactory with MELD-Mayo and -UNOS whose performance improved much after recalibration. A prognostic analysis showed that age, albumin, and TIPS indication might be used for a MELD updating.

Conclusions
In this validation study the MELD performance was largely unsatisfactory, particularly in non-viral cirrhosis. MELD recalibration and candidate variables for a MELD updating are proposed.

Lay summary
While discrimination performance of the Model for End Stage Liver Disease (MELD) is credited to be fair to good, its calibration, the correspondence of observed to predicted mortality, is still unsettled. We found that application of 3 different versions of the MELD in two independent cirrhosis cohorts yielded largely imprecise mortality predictions particularly in non-viral cirrhosis and propose a validated model recalibration. Candidate variables for a MELD updating are proposed.

10
https://www.medpagetoday.com/opinion/ethics-consult/93831


Opinion
>
Ethics Consult
Ethics Consult: Is Oil Tycoon's Billboard for Liver Donor Ethical? MD/JD Weighs In
— You voted, now see the results and an expert's discussion
by Jacob M. Appel MD, JD July 30, 2021

Welcome to Ethics Consult -- an opportunity to discuss, debate (respectfully), and learn together. We select an ethical dilemma from a true, but anonymized, patient care case, and then we provide an expert's commentary.
Last week, you voted on if it was ethical to let an oil tycoon jump the liver transplant line by advertising for an organ[/url].[/font][/size]
Yes: 19%
No: 81%
And now, bioethicist Jacob M. Appel, MD, JD, weighs in with an excerpt adapted from his book, Who Says You're Dead? Medical & Ethical Dilemmas for the Curious & Concerned.

Advertising for organ donation can be highly effective. In 2014, the nonprofit organization Reborn to be Alive hired Belgian advertising firm Duval Guillaume to promote organ donation. The result was a series of ads that depicted individuals engaged in foolish, life-threatening behavior (e.g., using a blowtorch alongside an oxygen tank) with the tagline "8 of his organs can be donated. Luckily for us his brain is not one of them." The campaign was noncontroversial and highly successful. More contentious are efforts by private individuals, like Tex, to advertise for organs on their own.
In the U.S., the allocation of most organs is managed by the United Network for Organ Sharing (UNOS), a nonprofit organization that follows rules enacted by the U.S. Department of Health and Human Services. The so-called Final Rule of March 2000, which governs the allocation of organs, allows donors to earmark their body parts in advance of their deaths.
Under limited circumstances, this approach makes sense: if the close relative of a patient on the waiting list dies suddenly, a strong moral case can be made for allowing the family to transfer the organ to their own kin -- as doing so likely would fulfill the wishes of the deceased, may tip those on the fence into donation, and does not in any substantial way undermine the fairness of the existing system. Presumably, the rich and powerful are no more likely to benefit from such intrafamilial allocations than the indigent.
In the years following the enactment of the Final Rule, well-off individuals like Tex have taken to advertising for organs. In 2004, cancer patient Todd Krampitz of Houston advertised for a new liver on billboards, ultimately receiving a liver from an anonymous family that earmarked the organ specifically for him. (Krampitz, 32, died of his disease 8 months afterward.) A year later, 31-year-old Red Cross publicist Shari Kurzrok, diagnosed with acute liver failure, advertised for a donor in the New York Times. (She ultimately received a liver from the waiting list, married, became a mother, and has enjoyed a successful career in advertising.) Ethicists and transplant surgeons remain deeply divided on the ethics of these maneuvers.

Critics like Arthur Caplan, PhD, of New York University, argue that allowing patients like Krampitz and Kurzrok to jump the line undermines the fairness of the system. Under federal law, organs are supposed to be allocated to those patients most in need, regardless of wealth or influence -- and allowing the rich and powerful to run ad campaigns circumvents that principle. The risk also exists that others will perceive the system as unjust and will refuse to donate. As a result, UNOS and the American Society of Transplant Surgeons have both issued statements opposing such advertising campaigns, including open solicitation on the internet and social media.
Yet, even without advertising, donors from the community often step forward to give organs to celebrities. Supporters of advertising are aware of the potential image problems created by such donations, but believe that the practice will increase the overall availability of organs. For example, there is no reason to believe that the family who donated to Todd Krampitz would have given an organ otherwise; any patients who secure outside organs through advertising, the thinking goes, also free up organs for others on the waiting list.
In 2005, Alex Crionas learned the hard way precisely how divided the medical community remains on the subject of advertising for organs. He had lined up a kidney donor, Patrick Garrity, only to be refused a transplant by his local hospital's transplant-coordinating nonprofit because he had advertised for a donor online. (Ironically, he had not met Garrity through his online ads.) Fortunately for Crionas, he was able to transfer his care to another hospital, which performed the transplant successfully, with no ethical objections.
Jacob M. Appel, MD, JD, is director of ethics education in psychiatry and a member of the institutional review board at the Icahn School of Medicine at Mount Sinai in New York City. He holds an MD from Columbia University, a JD from Harvard Law School, and a bioethics MA from Albany Medical College.

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