Posts Tagged ‘transplant patient story’

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.

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.”



*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.

Heart to Heart – Celebrating Our Heart Transplant Patients

Harry WuestEach year, Emory heart transplant recipients, their families and our staff and faculty look forward to Heart to Heart, a celebration of renewed lives through heart transplantation and the gift of organ donation. This year, heart transplant recipients from both Emory University Hospital and Emory Saint Joseph’s Hospital attended the event on Saturday, February 14th, at the Miller-Ward Alumni House. The Valentine’s Day event was a great success with nearly 200 guests attending.

“We always enjoy seeing the smiling faces of our heart transplant recipients and their families, especially on Valentine’s Day, a holiday celebrating the heart” says Neile Chesnut, Manager of the Emory Heart Transplant Program. “The celebration affirms how important our work is. We love seeing so many recipients doing well and back to their normal lives.”

One of the event’s highlights was getting reacquainted with Harry Wuest, who had the “oldest” heart. In May, Harry will celebrate the 30th anniversary of his heart transplant. Harry received a new heart on May 24, 1985 and was the third patient to receive a heart transplant at Emory University Hospital. At the time, his heart was weakened from cardiomyopathy, which he suffered with for 12 years. He was unable to work and in such bad shape, he spent a month hospitalized in the cardiac care unit prior to his transplant.

With his new heart, this lively 70-year-old is in good health. Harry spends time with his 10 grandchildren, works full-time as a CPA at Bach, James, Mansour & Company in Duluth, and plays a mean game of golf. (“I feed the fish,” he says.)

Harry’s happy story is one of many told time and time again among the recipients at Heart to Heart. It is an honor to know that we, the Emory Transplant Center, might have had a small part to play in the lives of the people there, recipients whose lives were forever changed by the miracle of donation and heart transplantation.

From a Life of Giving to Giving the Gift of Life

Michael (Mike) Beller wanted to make a real difference in the lives of others. He didn’t want to help just one person, he wanted to help as many people as he could. So Mike decided to altruistically donate one of his kidneys, which was the kickoff to a kidney transplant chain that has effected people in Atlanta to Wisconsin and beyond.

As the son of missionaries in Mexico, Mike grew up believing he had the responsibility to give back. He currently serves as Chief of Investigations for the Chamblee Police Department, and formerly served as an Army ranger. He is also the father of 5 children.

“It’s amazing,” says transplant surgeon Dr. Nicole Turgeon, “he’s lived a life where he has been giving, to his family, to his job and to his country.”

Last winter Mike started thinking abut donating a kidney. He found an article on the internet about the National Kidney Registry.

“There are 90,000 people in this country that need a kidney and there’s 1000s of them every year that die without one”, says Mike.

The National Kidney Registry matches people who need a kidney and have a willing donor who is not a match for them, with someone who is a match; therefore, connecting together a chain of transplants with p aired donors across the country.

In paired donation, an incompatible donor and recipient pair is matched with another incompatible donor and recipient pair, and the kidneys are exchanged between the pairs. By giving their kidneys to unknown, but compatible, individuals, the donors can provide two or more patients with healthy kidneys where previously no transplant would have been possible.

Mike decided he wanted to be the person to start one these chains.

“If he gave to one person, that would be great but this would allow him the possibility to maybe help two, three, five, six, and in some chains we see even up to 50 or 60 people involved,” says Dr. Turgeon.

On August 1st, Mike donated his healthy kidney that was immediately flown by passenger jet to Madison, Wisconsin to save the life of a recipient. Mike’s gift would then trigger another transplant in Pennsylvania, and then another in South Carolina and so the chain goes on.

Two and a half weeks later Mike returned to work and is doing well.

Says Mike, “I can’t think of anything else you could do that could help another human being this effectively.

Mike’s story was recently featured on Fox 5 News. You can learn more about this tremendous gift by watching the video below:

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When Living Organ Donation Means Living On Through Others

Living Organ Donation Donate Life MonthIn recognition of Donate Life month, the Emory Transplant Center was honored to have a very special speaker share an extraordinary story – one that touches the very heart of what it means to give the gift of life even in times of heartbreak.

Scott Haggard shared with Emory physicians and staff the story of his sister, Terri Haggard Wade – a loving 48 year old wife, mother, sister and daughter – who spent her professional career as a nurse.  And as part of the medical profession, Terri knew the importance of organ donation.  As a matter of fact, when her son was learning to drive, Terri said that before he could drive on his own, he would need to register to become an organ donor.

It was March of 2009 when Terri was rear ended in an automobile accident.  She began to experience headaches, and when they continued after a few weeks, Terri decided to go to an urgent care center to be evaluated. The urgent care center sent her to a nearby hospital to have a CT scan of her head.  And that was when they discovered Terri had a brain tumor.

On April 15, 2009, Terri had surgery to remove her tumor.  The surgery was more complicated than anticipated, and Terri did not wake up immediately after the surgery.  After ten days, Terri still had not awakened and her intracranial pressure spiked to very high levels, causing brain death.

At this time, Terri’s medical team approached her family asking them to make a very difficult decision.  They had to decide whether or not to allow Terri’s organs to be donated – they knew she wasn’t really with them anymore.

“We were never going to have Terri,” said Scott, “but to have her be able to help others, even in death, meant everything to us”.

To honor Terri’s wishes, her organs were donated, saving lives as she had done so many times before as a neonatal intensive care nurse at Egleston.  Terri was very loved among many – over 700 people were present at her funeral.

Although Scott knows that the individuals who received his sister’s organ are grateful for their gift of life, he says “It also means a lot to us, the donor family, to know that Terri is able to live through others”.

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Sherrell Gay Receives the Gift of Life Just in Time to Witness New Life

Sherrell Gay, Double Transplant Patient

Sherrell Gay

If you remember reading about kidney transplant recipient Ken Sutha and his participation in the U.S. Transplant Games, you might also remember reading about Sherrell Gay, who received her heart at the Emory Heart Transplant Center and also participated in the games. In fact, Sherrell celebrated the 8-year anniversary of her transplant procedure during the Games’ closing ceremonies.

Although Sherrell (who’s originally from Waynesboro, GA) received her first heart transplant a decade ago, for the past 18 months, she has been on the waiting list for another heart due to allograph vasculopathy, a fairly common long-term complication from heart transplant. Allograph vasculoplasty is known more commonly as chronic rejection, which can develop in transplanted hearts at any time – soon after transplant or many years later. The small vessels in the heart become blocked first and as the disease progresses, the larger vessels can become blocked too. “I was diagnosed with allograph vasculpathy at my 7 year annual post-transplant appointment,” Sherrell recalls. “I was treated with medication for 1 ½ years and then the team decided the disease had progressed too far to benefit from drug therapy and I needed to be evaluated for another heart transplant.”

Both throughout her first heart transplant journey and while Sherrell was hospitalized for a portion of 2012, her kidney function continued to decline. “As my wait time continued, my kidney failure worsened, as did my heart function,” Sherrell recalls. Emory’s kidney transplant team was asked to consult on her case, and they concluded that after Sherrell had spent 10 years on immunosuppressants and her kidney function was in decline for almost a decade, her kidneys were in end stage kidney failure. They added Sherrell to the kidney transplant waiting list, knowing that the other option was a potential lifetime on dialysis following her next heart transplant.

Thankfully, Sherrell was contacted about her waiting list status and learned she would be receiving her new heart and two kidneys from the same organ donor. “On the day I got the call there were organs matched for me, I had to start emergency continual dialysis. The organs became available at just the right time,” she says, and “by doing both organs from the same donor, I stood a better chance at successfully living healthy.”

On December 9, 2012, Sherrell received her successful double organ transplant and is now recovering and doing well. Dr. Duc Nguyen performed her heart transplant first, and Dr. Paul Tso performed her kidney transplant immediately after.

While Gay spent much of 2012 at Emory, this mother of two daughters and one son never missed a chance to help cheer up and educate other candidates and recipients and families about the transplant process from her bedside, except, of course, when she was most sick. (At the worst point, she suffered two heart attacks and was placed on emergency peritoneal dialysis.) If such a thing were awarded, Gay would win the Oscar for the Best Advocate Ever for Organ Transplantation.

“I am extremely grateful for my donor family who made the decision to make that donation of life — we got the best gift that day,” says Gay, who also helps lead the Georgia Transplant Foundation Mentor Project.

We are very glad to hear about Sherrell’s remarkable recovery and send her best wishes on her continued recovery and on the upcoming arrival of her first grandbaby. Thanks to her double organ transplant, Sherrell is now well enough to be by her daughter Tracy’s side when she gives birth at the end of March.

The gift of life just in time to witness the gift of a new life; now that is a transplant miracle.

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Emory Heart Transplant Patients Celebrate the Gift of Life!

Heart transplant gift of lifeOur Emory transplant surgeons help facilitate the tremendous gift of organ donation and renewed life by performing approximately 60-70% of all heart transplant procedures in Georgia each year. On an annual basis, approximately 50 new Georgia adults receive heart transplants each year, and recently, over 100 of our Emory Heart Transplant patients and their families gathered together to celebrate this gift of life.

Watch this heartwarming Fox 5 News piece and meet some of our patients whose lives have been changed thanks to their heart transplant procedures.

For Ed Mann & Felicia Henderson, It’s a Small World After All

Ed Mann Felicia Henderson Living Donor Kidney Transplant

Ed Mann and Felicia Henderson on a recent visit to the Emory Transplant Center.

As a physical education teacher, every day Ed Mann helps keep the children of Mount Zion Elementary School in Carrollton, GA in tip-top-physical condition, but ironically, his own health has been suffering for the past three years. In 2009, Ed was diagnosed with scleroderma, an autoimmune disease that resulted in a decline in his heart and pulmonary health initially, but then, took a toll on his kidneys. As a result, six hours of every one of Ed’s days was spent undergoing dialysis treatments. And despite his declining health and ongoing medical needs, he still didn’t missed a single day of work.

After seeking a kidney donor via traditional methods to no avail, one day a few months ago, Ed had an idea that he called “a shot in the dark,” but it was a decision that proved to be much more than that. Ed posted a message on Facebook, “Just a little advertising. Still need a kidney. 404-712-4450.”, which is the phone number of the Emory Kidney Transplant Program. A shot in the dark turned into an even more unlikely set of circumstances when the person who answered Ed’s call for help was not only a fellow employee at Mount Zion Elementary, but also Ed’s longtime friend of 16 years, Felicia Henderson.

Not knowing whether she would be a match for Ed, “I just called the number,” recalls Felicia. And after undergoing the necessary testing, the team at the Emory Transplant Center confirmed that Felicia was indeed a match to be Ed’s kidney donor. Upon receiving the news, Felicia immediately committed to being Ed’s donor, “People that are able to give a kidney live longer than the average person, not because they have given a kidney, but because they were healthy enough in the first place to be able to do it.”

Because of Felicia’s gift of life, Ed will continue to coach and teach the children of Mount Zion Elementary how to stay physically fit. “The gift of life. I know I’ve got so many good friends. Very thoughtful, very kind.”, he says.

Felicia and Ed’s transplant operation took place exactly two months ago today, on November 16, 2012. Since the surgery, both Ed and Felicia are doing well. They spent time with their families over the holidays celebrating renewed health and the gift of life, and have both returned to work at Mount Zion Elementary.

When we asked Ed if there is anything he would like to say to Felicia, he told us, “Yes. I would like to tell her thank you for saving my life. You are the most thoughtful and kind person I know, and I appreciate what you did for me.”

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Islet Cell Transplant for Type 1 Diabetes? Julie Allred’s Story (Part II)

Julie Allred, Islet Transplant PatientIn November, we shared with you part I of Julie Allred’s story. Of the nearly three million Americans living with type 1 diabetes, many of them will be able to successfully control their disease with insulin injections or pumps. But like Julie Allred, some patients will develop brittle type 1 diabetes, a condition in which even insulin injections and pumps cannot fully control the dangerous and often unpredictable swings in blood sugar that can lead to loss of consciousness and coma.

Throughout her life, Julie’s low blood sugar has been a constant source of concern, affecting her moods, relationships, career and ability to think clearly. A type 1 diabetic since age 10, Julie has always had to have someone, whether it be her father, husband or daughter, be on the lookout for the highs and lows of her blood sugar because she could not recognize them herself.

“I could never go anywhere alone,” says Julie. “And, I got to the point where I couldn’t even be in my home alone. Looking back, I realize now that my husband and daughter were always coordinating their schedules so that one of them could make sure that I was ok. It wasn’t just me who had diabetes. My whole family was dealing with it, too.”

But thanks to two islet cell transplants — one in July 2011 and another in February 2012 — at the hands of Emory transplant surgeon Dr. Nicole Turgeon and interventional radiologist Dr. Kevin Kim –– Julie has experienced relief in ways she never knew possible. Soon after the first islet transplant, the episodes of life-threatening low blood sugar levels stopped for Allred, helping her get back to the things she enjoys.

“The transplant has allowed my blood sugar to stay even throughout the day,” says Allred. “I have never felt this way in my life. I have more energy, and I am able to do things without constant worry and without someone always having to watch me.”

As part of a multi-year national research study on the islet cell transplant procedure, Allred is one of just 18 patients who has had the procedure at Emory, the only transplant center offering islet cell transplants in Georgia. Insulin-producing cells (islets) are harvested from an organ donor’s pancreas and inserted into the recipient’s liver. The fragile islets implanted in Julie’s liver serve to take over the job of making insulin, reducing the need for insulin shots, at least temporarily, and helping her body regain the ability to maintain steady, healthy blood sugar levels. Julie has been able to reduce her insulin from 65 units a day received through a 24-hour insulin pump to just a once daily injection of four units at bedtime.

“I’m so lucky to be one of those few people to have that little bit of normalcy for my life and family,” Allred says. “My family and I finally have freedom.”

Julie’s father, who was her primary caregiver, passed away shortly before Julie’s first transplant.

“My dad always said there would be a day when this would happen, that I would feel better,” says Julie. “Though he’s not here to experience it with me, I know he’s watching me and is so happy that he was right.”

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Families Pay Forward the Gift of Life in Emory’s Paired Exchange Program

Paired Exchange Tiffany Prevo Mark VillantiAs a personal trainer and general manager of Workout Anytime in Decatur, GA, Mark Villanti believes being healthy and living life to the fullest is a top priority. Fitness is Mark’s passion and he especially enjoys running ultra-marathons and helping his clients get into shape. One day, a client of Mark’s mentioned that her husband was in need of a kidney transplant and that neither she nor any other loved one was a match. Mark got to thinking, ‘what if I became a donor?’ Coincidentally, back in college as a Sports Science major, Mark conducted research on renal failure and gained a keen understanding of what physical limitations a person on dialysis experiences – being tied to a dialysis machines for hours at a time, multiple times during the week. When his client mentioned her husband’s need for a kidney, in some way Mark felt it was a spiritual message.

“I have always loved to help and protect people; my wife would say that I am a very giving person. Being a combat veteran of the US Marine Corp and the US Army, serving in the Iraq war, and losing both parents in the past 5 years made me realize how important life and living is.”’

Knowing what a dialysis patient is up against on a daily basis and thinking about his client’s husband’s need, Mark began the matching process and was approved to be a donor. But while in the process, Mark’s client’s husband received a kidney from another donor. Instead of returning back to his daily life and forgetting the notion of donating, Mark decided to continue the process to become an altruistic donor.

When he was contacted by Emory informing him they found a matching patient candidate, Mark learned only that she was a woman in her 30s needing a kidney and that she was a part of the Paired Exchange Program through the Emory Transplant Center. This program was established to help pay forward the gift of donating life, meaning that when Mark donated his kidney to the recipient, the recipient’s loved one would then donate their kidney to another person in need since there was not a compatible blood match. In a paired exchanged donation, a donor and recipient are matched with another incompatible donor and recipient pair, and the kidneys are exchanged.

Mark’s recipient Tiffany Prevo, wife and mother of three daughters (a 9 yr old and 5 yr old twins), was diagnosed with Lupus in 2008, which led to her end stage renal failure. Tiffany’s doctor told her that she would either need dialysis treatment for the remainder of her life, or that a kidney transplant was an option. Tiffany decided to be placed on the transplant waiting list. While waiting, Tiffany underwent peritoneal dialysis which tied her to a machine for eight hours every day.

“The dialysis treatments made me very emotional. I was up and down and just borderline depressed. I wanted a transplant right away – I couldn’t work and worse of all, I couldn’t do things with my daughters.”

Jemel, Tiffany’s husband, and other members of her family went through the matching process but were not eligible. Jemel immediately offered to be a part of the paired exchange program to accelerate Tiffany’s chance of receiving a kidney. Tiffany waited 18 months before she received the call from Emory stating they found Mark, her donor match.

On the day of transplant, Tiffany felt calm, asking herself, “Is this really happening?”. As Mark went in to have his kidney removed, he was not afraid at all. As a matter of fact, he felt excitement and was “ready to get this done to help this woman.” And finally there was Jemel, who also had surgery on that same day to donate to a child that he has never met.

All surgeries were successful. As Mark was recovering from his surgery at Emory University Hospital, he was up walking the halls as requested by his doctor, Dr. Nicole Turgeon. “As I walked past a room in the hall, I looked in and saw a woman. She looked back at me and we both thought, could this be the person?” As a matter of fact, Jemel and Mark were recovering in patient rooms right next to one another, and by chance a meeting of the three occurred. There were many smiles, hugs and tears of joy. Mark knew he had given the gift of live.
With words of wisdom to others who may be considering becoming a living donor, Mark says, “With anything else you have to look at the pros and the cons; in my case there were no cons. I knew I could live with just one kidney so I went for it. Life is a gift God has given us.”

Tiffany is very thankful to Mark stating, “I’ve never met such an amazing kind hearted man in person. You see it on TV or hear about it on the news but I never thought it would happen to me – I’m really grateful to Mark”. As for her husband, “Well he’s my hero. Without him all this wouldn’t have been possible – he’s amazing too.”
Two weeks post surgery, Mark was already back to one of his favorite pastime’s, running on the trails. Fast forward two months later to today, and Mark is training for another ultra marathon in September, where he will run 35 miles. He is back to his normal day to day activity and feeling great.

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