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hiJim Gleason 2019 National Donor Memorial Award for Excellence Recipient

Heart recipient honored with 2019 NDM Award for Excellence

Heart recipient honored with 2019 NDM Award for Excellence

United Network for Organ Sharing (UNOS) named James “Jim” Gleason of Beverly, NJ, the winner of its 2019 National Donor Memorial Award for Excellence in recognition of his untiring efforts as a donation advocate.

Jim’s volunteer journey began 25 years ago when he received a heart transplant. From that moment in October of 1994, Jim Gleason has been an unwavering advocate for organ donation and transplantation. Soon after his transplant, Jim began visiting transplant patients, sharing his story with others, and writing newsletters.

Since that time, Jim has given more than 500 talks from coast to coast. He has also provided support to transplant candidates and recipients, represented the voice of patients in organ policy development, shared his experience with transplant professionals and volunteered and raised money for non-profit organizations.

“Jim’s level of commitment to promoting donation and helping other transplant patients is unparalleled” said UNOS President Sue Dunn. “He has been a tireless advocate for more than two decades and continues to play a vital role within the donation and transplantation community.”

UNOS established the National Donor Memorial Award for Excellence in 2010 to recognize exceptional advocates who promote organ donation and transplantation. UNOS solicits nominations for the award from the organ procurement organizations and transplant centers in the United States.

Jim was nominated by Hospital of the University of Pennsylvania. Previous winners have been donor family members, a social worker/donation advocate, a liver recipient, and the recipient family members.

UNOS unites and strengthens the donation and transplant community to save lives.

UNOS is a non-profit, charitable organization that serves as the nation’s Organ Procurement and Transplantation Network (OPTN) under contract with the federal government. The OPTN helps create and define organ allocation and distribution policies that make the best use of donated organs. This process involves continuously evaluating new advances and discoveries so policies can be adapted to best serve patients waiting for transplants. All transplant programs and organ procurement organizations throughout the country are OPTN members and are obligated to follow the policies the OPTN creates for allocating organs.

Headquartered in Richmond, Va., UNOS is also home to the National Donor Memorial, which honors the life-giving impact of organ and tissue donation.

Learn more about the National Donor Memorial

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Solitary Kidney Siblings

Solitary Kidney Siblings

Eight years ago, my brother Josh, who was 19 at the time, donated his kidney to my Dad at Northwestern Memorial Hospital. It was a miracle how well the transplant worked. My sister, Hannah, and I were so inspired by what we saw that we knew one day, we wanted to be living donors for somebody. A couple years after after my Dad’s kidney transplant, we found out that my Dad would need a second transplant. I was approved to be his donor, but he was too sick at the time for a transplant. We spent the next two years trying to get him healthy enough for surgery, but unfortunately he passed away last September. The year leading up to his death was very rough: numerous doctors appointments, hospital stays, many many days of “not feeling well.” Hannah, now 24, and I, 25, didn’t want another family to go through what we had gone through. We had witnessed the miracle of organ donation, so we decided to honor our Dad by donating our kidneys anonymously. So on March 14 & 15, Hannah and I each donated one of our healthy kidneys to a complete stranger at Northwestern. It was a wonderful experience and I wish I could do it again. The pain was less than I expected and the recovery time was surprisingly quick. We both felt like we were at a time in our life where we could take off work, were physically at our healthiest, and neither of us had husbands/children who depended on us. I have been a nurse in the Medical ICU at Northwestern for the last four years and my Dad just so happened to spend some of his final days on my unit. I felt badly that I couldn’t save my Dad, both as a nurse and with my kidney, but that didn’t mean I shouldn’t save someone else. We took the worst thing that happened to us and turned it into something beautiful.

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NRLB update: MMaT calculation now based on DSA of transplant hospital

Effective May 24, 2019, at 10:15 p.m. EDT, the median MELD at transplant (MMaT) scores for liver candidates with exception scores are now based on recent liver transplants performed at liver transplant hospitals within the donation service area (DSA) where the candidates are listed.

When the National Liver Review Board (NLRB) was implemented on May 14, 2019, at the same time as the acuity circles distribution model, the basis of the MMaT calculation was recent transplants at all liver transplant hospitals included in a 250 nautical mile radius of the hospital listing the exception candidate. With the reversion to a donation service area (DSA) and region-based liver allocation system effective May 23, some DSAs had different MMaT scores among liver programs within their area. This in turn could create disparities affecting candidates’ transplant access within the local DSA of the donor.

The OPTN Executive Committee, by teleconference May 24, unanimously approved basing the MMaT calculation on DSA to address unintended consequences of the reversion to DSA-based liver allocation.

The conversion has been made within UNetSM for all liver transplant candidates who had an exception score based on MMaT within a 250 nautical mile radius. Please refer to this table for the MMaT score for each liver transplant program based on DSA. If you wish to compare it to the MMaT based on 250 nautical mile circles, this table lists the previous scores.

Many individual candidates’ MMaT will remain the same under the conversion as it was under the previous calculation. Other candidates will have their exception scores either increase or decrease.

You may apply to UNOS to have a candidate’s waiting time adjusted only if the candidate experiences an increase in their MELD exception score as a result of this action. The waiting time adjustment will include time the candidate had at a lower exception score from the May 14 initiation of NLRB up until this action. To request a waiting time adjustment for a candidate, please submit a Waiting Time Modification form. These forms are located in UNetSM; navigate to the WaitListSM, then on the top menu select “Resources”, then select “Forms/Tools.”
Median PELD at Transplant (MPaT) is unaffected by this action. MPaT is the same for all transplant programs with PELD exception candidates and will remain at 35.

As always, transplant programs may request individual exception scores for candidates by the procedure set forth in OPTN Policy 9.4 (MELD or PELD Score Exceptions).

If you have questions about data or information systems, contact UNOS Customer Service at 800-978-4334. For policy-related questions, send an e-mail to member.questions@unos.org or call 844-395-4428.

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Liver policy reverted to DSA and regions

OPTN Policy 9 (Allocation of Livers and Liver-Intestines) has reverted to use of the donation service area (DSA) and regional distribution boundaries in effect prior to May 14, 2019. This action complies with a federal court order dated May 17, 2019.

The National Liver Review Board (NLRB) remains in effect. Candidates’ currently assigned exception scores did not change. As always, transplant programs may request individual exception scores for candidates by the procedure set forth in OPTN Policy 9.4 (MELD or PELD Score Exceptions).

Resources
The updated liver allocation policy is available in the Policies section of the OPTN website.
Online help documentation covering UNetSM functionality is also available.

Additional information relating to liver policy developments may be found here and will be further updated as needed.

Questions? If you have questions about data or information systems, contact UNOS Customer Service at 800-978-4334. For policy-related questions, send an e-mail to member.questions@unos.org or call 844-395-4428.

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Changes to liver policy and exception score process are in place

The new liver allocation policy went into effect today, May 14, along with changes to the process for evaluating and assigning liver exception scores.

The new policy provides a fairer, more equitable system for all liver patients—no matter where they live—as they wait for a life-saving transplant.  It’s expected to reduce waitlist mortality by roughly 100 fewer deaths each year, will allow more children to receive live-saving transplants, and will correct an inequity that emerged over time within the old policy that led to unfair advantages and disadvantages based on where liver transplant recipients live.

The transplant community, including a committee comprising transplant experts, organ recipients, and donor families from around the country and the OPTN Board of Directors—with extensive input from the public—came together to develop and approve the new policy.

Until the dream comes true and we no longer have long waiting lists in the U.S., the transplant community will continue its work to find new ways to reduce the number of patients who die each year waiting.  This new policy will support those efforts, bringing long-awaited relief to seriously ill patients awaiting a life-saving transplant.

Additional details about the policy are available on the UNOS website liver distribution page.

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My second chance, thanks to an organ donor!

My second chance, thanks to an organ donor!

I received a kidney on February 5, 2019 from a young deceased organ donor. My donor and their family has given a second chance at life to a daughter, granddaughter, niece, aunt, friend, wife and mother. Words can’t even express the gratitude my family and I have for the choice of donation this individual made. The choice of donating ones organs, whether it was their wish or their family’s wish, is truly been a miracle to others. For that I thank organ donors everywhere for the most selfless and caring decision that they have made.
My name is Amanda and I am from Erie, Pennsylvania. I am a wife and a mother of three children. At the young age of 15 yrs old I was diagnosed with severe high blood pressure. I was put on a medication regimen. However it was so bad that the medication combination I was on would not work after about 4-6 months. Doctors would have to change up the medications and try a new combination everytime. At 20 yrs old I found out I was expecting. At my 12 week checkup I was put on bedrest immediately and told something was wrong with my kidneys. I needed to to see a Nephrologist. He explained that my high blood pressure over the past 5 yrs has caused my kidneys to start shutting down. At that point my kidney function was only about 70%. At 34 weeks into my pregnancy I was rushed into emergency C-Section to deliver my baby, as I was so sick he was in danger. Over the next year I was monitored closely. Then I found out I was expecting again. This time I was on immediate bedrest and at 27 weeks was told I may have to make a choice, me or the baby. Luckily I fought hard and made it to 37 weeks. I had another C-section along with getting my tubes tied as they said I would not make it through another pregnancy. Over the next 5 yrs I ended up in the hospital several times for what they called acute kidney failure. Everytime I was on an antibiotic for something, my kidneys would completely shut down. Once they got me through the antibiotics and it was out of my system, my kidney function would restore. However that coupled with my BP slowly ran my kidneys function further down. In 2012 I made the choice and started school to become a nurse.
2 weeks into the 2nd semester (End of Oct.) I ended up hospitalized. I then heard the words I was dreading. My kidneys were functioning under 15% which meant I had to start dialysis. They scheduled an appt to get my av fistula(dialysis access), which would take 8 weeks to mature before it could be used. I went home and 2 days later was back in hospital,(for which I missed my daughters birthday) sicker then before. I had to start dialysis immediately so I had to have emergency surgery to get a chest catheter put in and start dialysis that day. I ran 4 hours on the machine 3 days a week. Due to the scheduling I would go in right after my children got out of school and didn’t get home until they were already in bed. So for 3 days a week my children didnt get to see me. December 2012, was one of the sadest moments of my life. While at holiday event where we met Santa, I heard my children, who were 5, 8 & 8 at the time, ask Santa for a kidney for their mom!
Over the next few years I struggled with dealing with my disease, trying not to be depressed and trying hard to be a functioning mother and wife. In May of 2018 began a 4 month battle against death. Over the course of those 4 months, I had to have over 12 units of blood transfused into my body. My dialysis access (AV Fistula) stopped working so I had to have a chest catheter, that connected to my heart, put in for dialysis. They had to make another AV Fistula in my other arm. I was hospitalized several times, including ICU stays. I was basically bound to my house, So I could not enjoy summertime with my children. All they saw was a very sick mother. I honestly thought my time was almost up. I cried every night fearing what my kids would have to endure at such a young age. Finally I slowly started getting through all the medical problems and began to get a little better. Normally a catheter stays in about 8 weeks. After so many complications and fighting, at 18 weeks, I was finally able to get it out. I then continued to work hard on keeping my health better so I could get back onto the transplant list. The evening of February 4th I got a call saying I was back and active on the list. The very next morning, as my children were getting ready for school, I got the call to get to the hospital for a kidney. I feel better now then I have in the past 6 and 1/2 years that I have been battling my kidney failure.
Making the choice to become an organ donor means more then you will ever know. Please become a donor. Be someone’s hero.

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