Posts Tagged ‘organ donation’

Proposed Redistricting for Liver Transplant Sharing Negatively Impacts Georgia and Southeast

liver-250x250A proposed redistricting policy in the regional structure for liver transplant distribution may have a negative impact on the state of Georgia and the region.

Currently, the demand for liver transplants exceeds the supply of liver donations nationwide, and many patients with liver disease will die while on the waitlist to have this life-saving surgery. To decrease the disparity in wait times for liver transplantation in the U.S., the United Network for Organ Sharing (UNOS), with the support of the Scientific Registry of Transplant Recipients (SRTR), is proposing to change the current liver allocation distribution. This plan proposes to share donor organs more broadly in an attempt to reduce geographic disparities.

But experts at the Emory Transplant Center say the proposed changes would:

  • Drive up costs.
  • Decrease survival rates.
  • Lower the quality of donated organs because of a longer travel time to the intended recipient.
  • Extend the recovery period for the patient.
  • Exacerbate disparities in health care suffered by minority and rural communities.

The Southeast already faces substantial health-related disparities, including less insured patients, fewer available doctors and higher rates of liver disease overall.

The proposed redistricting will take organs from the South, which already has multiple barriers to liver disease care for minority, low-income, and rural patients, and send them to the Northeast, which has a much higher rate of listing liver disease patients.

Currently, the U.S. is divided into 11 regions. Georgia is in Region 3 along with Alabama, Arkansas, Florida, Louisiana, Mississippi and Puerto Rico. Within Region 3, livers are shared across state lines for patients with a MELD (Model of End Stage Liver Disease) score greater than or equal to 35. A MELD score is used to determine a patient’s place on the liver transplant waiting list. A higher MELD score means a higher mortality rate. Because some patients’ disease is poorly reflected by MELD alone, they may be granted an “exception score” to make them competitive for organs. Certain regions, however, grant these exceptions more freely, so that patients’ average scores at transplant may differ greatly between regions.

The new proposal would change the 11 regions to eight districts, with Georgia in District 1. The new district would expand up the Atlantic Coastline and include South Carolina, North Carolina, Virginia, Washington, DC, Maryland, Delaware, New Jersey, New York, Connecticut, Rhode Island, Massachusetts, New Hampshire, Maine, as well as Puerto Rico. Within this district, livers would be shared across state lines for patients with MELD scores equal to or greater than 29.

We feel the new proposal will have a negative impact on patients waiting for liver transplants in Georgia and across the Southeast. Emory prides itself on our commitment to our patients. In transplant, this commitment includes a dedication to maintaining availability of donor livers for patients most in need. For more information about liver transplants in Georgia and the Southeast and what you can do to help, visit the Collaboration for Donation Fairness website.

What our Transplant Patients and Families are Saying

patients-wordsEmory Transplant Center is dedicated to partnering with our patients and their families to provide a quality and caring experience. One of the ways in which we track the patient experience is by regularly surveying our patients about the care they received at our facilities. Emory Healthcare works with Press Ganey to conduct a nationally benchmarked, objective patient satisfaction survey.

We are proud to share with you some of the gracious remarks we have received. Our physicians and staff continue to work to improve patient satisfaction and the care experience. Our goal is to respect our patients and visitors, value them as special people, and care about their overall wellbeing. Below are some of the comments Emory Transplant Center has received from our patients:

  • [We are] always greeted by the front desk staff with a smile and “hello.” They are very professional.
  • I’ve been coming to Emory probably over 10 years. [I was] hesitant about coming to a big city hospital at first, but I’ve found Emory to be the best of the best overall. Love my doctor, James Spivey, and my whole [liver] transplant team is terrific.
  • HUGE improvement in the promptness of the registration process.
  • My labs were taken promptly and the phlebotomist was very pleasant.
  • Total redesign from my last visit (clinic). Much warmer, inviting and attractive.
  • Excellent and efficient visit.
  • Dr. Spivey is an excellent caregiver and I am VERY fortunate to have him as my liver transplant doctor. I feel that he genuinely cares about my physical as well as mental well-being. And as busy as I know he is, he makes me feel as if I’m the most important issue at hand during the time we spend together! Not only is he a Great Doc, he’s a Great Guy!!
  • Dr. [Sharon] Graves [transplant nephrologist] is the greatest!
  • The staff are professional and very friendly and patient-oriented.
  • Emory has always provided a level of care that goes a step above and beyond what is required. I would recommend EUH to anyone in need of a health care facility. Emory University Hospital is one of the best in Atlanta.
  • The only tests [I had] performed were an EKG and labs drawn. Both of these services were very professional and an easy experience.
  • The staff always takes great care of me!
  • Service all around was excellent!
  • The lab technicians are wonderful! They are friendly and caring. Very professional and they know you by name. Have never been treated anything but great by these individuals.
  • The transplant center always takes good care of me in every way!
  • Krystal Lee and Dr. [JP] Norvell [liver transplant program] are fantastic!!!

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Liver Transplant Recipient Celebrates Silver Liverversary

patient story 8-11On July 2, Terri Willis celebrated her 25th anniversary with her transplanted liver. Over the years, Willis, who lives in Douglasville, has become one of the Emory Transplant Center’s most vocal advocates on the benefits of organ donation and liver transplantation, talking to other transplant candidates and recipients, participating in many transplant events and writing about her experiences on Facebook and blog posts.

“If someone had not said yes to organ donation, I would not be here,” she says.

Willis had her liver transplant at age 13 at Children’s Healthcare of Atlanta at Egleston, but she has been an Emory Transplant Center patient since 1999. Her liver failed 25 years ago as the result of a metabolic disorder called tyrosinemia, a genetic defect that causes the immune system to break down the amino acid tyrosine, the building block of most proteins. When tyrosine and other byproducts build up in the tissues and organs, it can lead to nosebleeds, dietary issues, problems with the central nervous system, liver and kidney failure, and hepatocarcinoma. Willis developed tumors throughout her liver, and her transplant saved her life, keeping the cancer from spreading to other organs.

Willis has been running for years to stay in shape, and has participated in five U.S. Transplant Games mostly in track and field events. She is an inspiration to other recipients — to everyone who has ever heard her story.

Willis remains optimistic, even though she is currently experiencing a few issues with her liver and kidneys due to her medications and the age of her organ graft. The road hasn’t always been easy. She had two quickly resolved episodes of rejection in the mid-1990s and one eight-month long episode this year that has been more of a setback. But she keeps her positive attitude and shows other transplant recipients what a little grit can do by continuing to walk and run. “I want other patients to see that they can be active post-transplant,” she says. She ran Douglasville’s Hydrangea Festival 5K road race on June 5 in a specially made t-shirt in celebration of her upcoming liverversary. She gave her finisher’s medal to her longtime transplant hepatologist, Dr. Samir Parekh, who is pictured above with Willis.

In the News: Emory Transplant Center Kidney Living Donor Program

organ-donor260x200Emory Transplant Center has recently made headlines with their Kidney Living Donor Program. Stories featured on FOX NEWS Health and in Atlanta magazine highlight individuals who have given the gift of life through organ donation. One story features Beth Gavin, a medical reporter for FOX5, who altruistically donated her kidney to a stranger that kicked off a string of six transplants. The other highlights an Atlanta police officer who donated a kidney to a stranger to allow his wife to be able to receive a kidney from someone else through paired donor exchange.

A kidney paired donor exchange occurs when a person in need of a kidney transplant has an eligible living donor, but the living donor is unable to give to their intended recipient because they are incompatible. Therefore, an exchange with another donor/recipient pair is made. This kidney paired donation enables two incompatible recipients to receive healthy, more compatible kidneys.

“Emory began its Kidney Paired Donor Exchange Program in 2010, and we have been participating in the National Kidney Registry since 2012,” says Nicole Turgeon, MD, associate professor of surgery, Emory University School of Medicine and surgical director of the Paired Donor Exchange Program. “Paired donor exchange gives patients an opportunity to receive a living donor kidney transplant from a loved one or friend, despite incompatible blood types and positive crossmatches. In paired donation, a donor and recipient are matched with another incompatible donor and recipient pair, and the kidneys are exchanged between the pairs.”

According to Dr. Turgeon, there are currently more than 100,000 people on the kidney transplant waiting list. The discrepancy between the number of organs available and the number of people on the waiting list continues to grow. The Emory Transplant Center is the state’s largest transplant center performing the highest volume of kidney transplants in Georgia.

FOX NEWS Health Story 

Atlanta Magazine Story

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Emory Transplant Center’s Living Donor Wall Has 85 New Names

new namesWe are proud to announce that 85 new names have been added to the Emory Transplant Center Living Donor Wall. Spanning one entire wall of the Transplant Center, the Living Donor Wall made its debut in 2007. Since its premiere, we are happy to report that we have had to expand it a total of three times, with additions made in 2009, 2011 and 2013. Today, the wall displays nearly 500 selfless individuals who have donated organs along with the relationship they have to their recipients.

This is just another reminder of how much the Emory Living Donor Kidney Program has grown in recent years. In addition, it is a testament to the amazing life-saving and life-enhancing gifts our living donors make to transplant recipients.

Our Living Donor Wall pays tribute to the individuals named there as tangible depictions of the ultimate gift given to another.

The next time you visit Emory Transplant Center, please take a moment to view the Living Donor Wall and acknowledge those who have given the gift of life.

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Emory Liver Transplant Patient Celebrates One-Year Liver-versary

UntitledAll of our patients are pretty special, but there is something extraordinary about a liver transplant recipient who comes all the way from Gaffney, S.C. to host a party to thank the medical team who cared for her while she was at Emory Transplant Center.

Evonne Leland received a lifesaving liver transplant on April 22, 2015. She came back on the same date one year later — this time in good health — to celebrate what we at the Emory Transplant Center like to call a one-year “liver-versary.” A former restaurant owner, Leland, with help from her family and friends, organized a lunch to thank Emory Transplant Center staff and physicians. It was a true celebration of life.

“Before I came to Emory,” Leland says, “I was told there was nothing I could do; I had only six to nine months to live.”

Throughout the mid-1990s, Leland had one medical issue after another, resulting in many visits to doctors. In 2001, Leland learned she had an abnormal finding on her liver, and by 2009, her liver began to fail. In 2014, Leland was diagnosed with hepatocellular carcinoma (HCC) and placed on the liver transplant waitlist in Charlotte, NC. Due to her health status at that time, she had to be taken off the list. She subsequently sought a second opinion at another hospital in North Carolina, but she was told her cancer was out of the criteria for a transplant there.

Leland then made a call to Emory Transplant Center and was able to make an appointment right away with the Emory Liver Tumor Clinic. “Mrs. Leland came here on April 2, 2015 and because we have a multidisciplinary clinic, we were able to arrange for the right specialists to evaluate her and obtain the necessary imaging studies to evaluate her liver cancer,” says Dr. Anjana Pillai, a transplant hepatologist and director of the Liver Tumor Clinic. “She was able to see the specialists she needed and we were able to make the decision to admit her that same day and expedite her liver transplant evaluation.” The Emory Liver Tumor Clinic was opened three years ago and has coordinated a multidisciplinary team of transplant hepatologists and surgeons, medical oncologists, palliative oncologists, interventional radiologists, and advanced practice providers to care for HCC patients.

Leland received her transplant only three weeks after her first visit to Emory. It has been a difficult road over the past year, but she is an example of how the Emory Liver Tumor Clinic’s multidisciplinary team works with each patient with HCC, or tumors originating in the liver, to determine a care plan that is best for him or her. Leland has made a remarkable recovery.

“I am so grateful for my transplant,” Leland says. “When so many doors were closed, Emory opened one for me.” Dr. Joe Magliocca, surgical director of the liver transplant program, was her surgeon.

The Emory Liver Tumor Clinic treats patients with HCC, which often is the result of cirrhosis, or liver scarring, from chronic liver disease and decompensation. Patients with early-stage HCC and cirrhosis treated with liver transplantation have a five-year survival rate of 75%, compared to only 25% to 30% without a transplant. HCC is a growing problem in the U.S.

According to Leland, “It was so nice to see the staff again now that I am so much better. I get up in the morning, and I can hold up my hands and they work. I can get out of bed and my legs work. And I don’t have to be on dialysis any more. I am so happy at what I can do. Each milestone is so very important. I’m getting there!”

Hidden Gems: Emory Transplant Faculty & Staff Spotlight

Emory Transplant Center would like to showcase our hidden gems – the faculty and staff that have made an impact in the field of transplantation. Rachel Patzer, PhD, MPH, is an epidemiologist researcher in Emory’s Division of Transplantation and the Emory Transplant Center. Her research focus has been on health disparities and access to solid organ transplant. She is currently the principal investigator of a major National Institutes of Minority Health and Health Disparities study, RaDIANT (Reducing Disparities in Access to Kidney Transplantation) Community Study in Georgia that we featured in a previous blog post.

Rachel’s work in transplantation is her passion. She has had family members that have been touched by transplant, and understands the power of organ donation and how it can save a life.

“I think I want my legacy to be just that I made some difference in peoples lives,” says Dr. Patzer. “The patients who are willing to donate a kidney to help save a life are truly amazing individuals – I think it is so inspirational.”

Watch this video to hear from Rachel and how working in the field transplantation affects her.

The Powerful Gift of Organ Donation – A Lung Transplant Recipient’s Story

More than 120,000 individuals are waiting for for a transplant. Alice Koone, an Emory lung transplant recipient was one of those people.According to the United Network for Organ Sharing (UNOS), there are currently more than 120,000 individuals waiting for a transplant. One organ donor can save up to 8 lives, and sadly, 22 people die every day waiting for some type of transplant.

Alice Koone, an Emory lung transplant recipient was one of those individuals awaiting a life-saving transplant.

Alice was in desperate need for a double lung transplant due to severe complications with breathing. At a Talladega Superspeedway race in 2007, she remembers not being able to walk more than 20 feet without having to stop to rest because her lungs were so damaged.

In Jul 2007, Alice was place on oxygen, but her condition didn’t seem to be improving. On Sept. 13, 2007, three months after being placed on the lung transplant waiting list, she received a call that would change her life – she would receive a lung transplant that day with the Emory Transplant Center.

Neile Chesnut, an Emory heart transplant coordinator, said most people don’t understand how important it is to become an organ donor. Liver, heart, lungs, kidneys, pancreas and small intestine are among organs that can be donated.

Chesnut says one of the best parts of working with pre- and post-transplants patients includes getting to know the individuals as they wait, sometimes several months, for a transplant.

“I feel like they are my family,” said Chesnut.

A year after receiving her transplant at Emory University Hospital, Alice wanted to write a “thank you” note to her donor family, but she could not go through with it.

“How do you thank somebody for this?” she wondered.

But on her second transplant anniversary, she finally wrote that letter to the donor family. Alice, now 54, spends time with her baby grandson and volunteers as a mentor for the Georgia Transplant Foundation.

“I’m able to do a lot of the things I thought I would never be able to do again,” she said. “We are able to travel, camp, hike and just enjoy life. You are thankful for everyday that you get.”

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*Blog adapted from story written by Marisa Stout. Marisa is a senior at the University of Georgia majoring in public relations. Her passion for transplant stemmed from her grandfather’s need for a heart transplant. He received his life-saving transplant at Emory in 2004, and is doing well today.

Marisa says, “I wrote this piece because I feel as a college student writing a piece on organ donation, I can send a message about this important cause to my generation.” And of course, Marisa is an organ donor herself.

Your Organ Donation Questions Answered: Takeaways from Our Live Chat

organ-donor260x200Thank you to everyone who joined us for Emory Transplant Center’s live web chat on the topic of organ donation. With April serving as Donate Life month, we wanted to raise awareness around organ donation and answer your specific questions. Lead Transplant Coordinator, Sharon Mathews, MS, RN, CPTC, answered questions about organ donation, including how many people are currently waiting for an organ, what organs can be donated, and who can donate. She also discussed Emory Transplant Center’s living donor and paired donor exchange programs.

Below are just a few highlights from the chat. If you missed this informative chat, check out the full list of questions and answers located on our chat transcript. You may also visit the Emory Transplant Center website for more information. And for more information on how to become an organ donor, visit donatelife.net.

Question: How long can an organ stay viable during transport?

Sharon Mathews: For solid organs, heart and lungs are viable for 4-6 hours, livers up to 12 hours, the pancreas is viable for 12-18 hours and kidneys remain viable up to 24- 30 hours on ice. The goal is to transplant the organs within 8 hours or less of being recovered.

Question: Do you have to be on kidney dialysis before you can be put on the wait list for a kidney?

Sharon Mathews: No, if you have been referred to a transplant center and are undergoing evaluation for transplant, you can have potential living donors call in on your behalf. The initial screening tests can be done at this point in the process. However, you will not become active on the UNOS wait list until your kidney function meets protocol for transplantation.

Question: If my blood type doesn’t match my recipient’s what are my options?

Sharon Mathews: At Emory we are involved with the National Kidney Registry (a paired donor exchange program). In a paired exchange, a donor will donate their kidney to another recipient in exchange for a compatible kidney for their loved one. This can occur on the same day. So while they didn’t walk away with your kidney, they received a kidney that was the best match donor possible.

Currently more than 115,000 men, women and children are awaiting a life-saving transplant. They are in need of organs, tissue, and bone marrow which can all be transplanted if donors were available, giving recipients a second chance at life. Perhaps the most important message from the live chat is the one on the importance of organ donation and how it can have a huge impact on people’s lives.

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Gifts from the Heart

event1National Heart Month would not be complete without Heart to Heart, Emory Transplant Center‘s annual fete for heart transplant recipients and candidates, which was on Feb. 20 at the Miller-Ward Alumni House. Sixty heart transplant recipients and eight patients waiting on the heart transplant list — all supported by their family members — celebrated life during the 27th annual Heart to Heart.

The celebrants were at Heart to Heart to show gratitude for their renewed lives made possible by their organ donor families. Each year, the event draws the newest heart transplant patients as well as those who have had their new heart for many years. Three recipients, Earnest Mitchell, Stephanie Harmon and Herbert Kuper were on hand to honor their organ donor families for their lifesaving gifts and meet up with many of their caregivers during the transplant process.

“I give honor and praise daily to my heart donor and his family,” says Mitchell, who was with his wife, Rhonda — newlyweds, really, since they married in 2014. “This date will always be bittersweet, because we understand that this time of celebration for us will always be a time of remembrance for them.”

Mitchell, a Stockbridge resident, is celebrating his one-and-a-half-year anniversary with his new heart. He is pictured above with transplant cardiologist, Rob Cole, MD, Assistant Professor of Medicine. After being diagnosed with heart disease in 2006 and then congestive heart failure in 2009, Mitchell and his wife began investigating treatment options for his weak heart. Little did they know that a heart transplant would be his only option for survival.

event3Mitchell was admitted to Emory University Hospital’s coronary care unit (CCU) for constant monitoring and medication to keep his heart functioning while he waited for his new heart. After 139 days in the CCU, he learned a heart was available. He received his transplant on Aug. 15, 2014.

Stephanie Harmon, from Summerville, Ga., received her new heart in Dec. 2015. A surgical first assistant in a Floyd County hospital, Harmon developed breathing problems after an illness in Dec. 2013. An emergency room doctor diagnosed her with heart failure and she was sent by life-flight to Emory Saint Joseph’s Hospital, where she spent the next two months hospitalized. She went home with an Left Ventricular Assist Device (LVAD), a surgically implanted, battery-operated, mechanical pump that sent blood coursing throughout her body.

Eighteen months later, on Dec. 19, 2015, Harmon received the call from the Emory Transplant Center that a heart was available. “I couldn’t believe it, I was in total shock and I couldn’t move,” says Harmon. “My husband instantly started packing our bags.”

Three month after receiving her new heart, Harmon is doing well. Although it is still too early for her to reach out to her donor family, she is very appreciative of the life-saving gift she received.

South African native turned Atlanta resident, Herbert Kuper, developed an abnormal heart rhythm after knee replacement surgery. Doctors determined he had cardiac amyloidosis, or stiff heart syndrome, where clumps of proteins called amyloids take the place of normal heart muscle.

event2Kuper was placed on the heart transplant list, and received his new heart on Feb. 16, 2015. One year later, he is doing well.

“I am so grateful for my heart donor and family,” he reports. “I am also very appreciative of the amazing doctors and nursing staff at Emory University Hospital and Emory Saint Joseph’s Hospital that cared for me while I was so sick.”

According to Dr. Cole, “As a heart failure and heart transplant specialist, it is important to celebrate the new lives of our patients each year because of a precious gift they received. It also is important to honor those families who gave selflessly at a time of tragedy for them.”