Posts Tagged ‘patient stories’

AJC Features Emory Transplant Center Patients Freed of Type 1 Diabetes

islet transplant patientThe Emory Transplant Center is one of just a handful of institutions around the world performing islet transplants as a type 1 diabetes treatment. Emory is currently the only islet cell transplant program in Georgia, with 19 patients receiving islet transplants to date.

Islet cell transplant is still in the research phase awaiting Food and Drug Administration (FDA) approval so the surgery will no longer be experimental. Read a story in the Atlanta Journal Constitution featuring two Emory patients who have been diabetes free for a decade now thanks to islet transplant at Emory.

Learn About Islet Transplants

What Are Islets?
Islets are insulin-producing cell clusters found in the pancreas, which is a six- to ten-inch organ that lies behind the stomach. Each islet cluster is about the size of a grain of salt and contains a few thousand cells. A healthy pancreas has approximately a million islet clusters.
Glucose is the fuel that provides energy to cells. Insulin allows glucose from the bloodstream to enter cells. Without insulin, cells are deprived of fuel, and they begin to starve. As the cells starve, the level of glucose in the bloodstream rises to dangerous levels.
In type 1 diabetes, islets in the pancreas are destroyed by the body’s immune system. Without islets, the body cannot produce insulin. People with type 1 diabetes require several injections of insulin each day. They must follow a strict diet and monitor their blood glucose carefully. Sometimes, even the most diligent patients cannot completely control their blood sugar levels. Diabetes that is very difficult to control is called brittle diabetes.

Why Islet Transplantation?
Islet transplantation can restore insulin production by replacing the islets that have been destroyed. When insulin production is restored, blood glucose levels stabilize, and the health risks associated with low and high blood sugars are greatly reduced.

What Is an Islet Transplant?
The islet cell transplant process begins when islets for transplantation from a donated pancreas become available. During the islet transplantation procedure, the islets are infused into a blood vessel that leads to the liver. The islets from the pancreas are also separated from other cells through a highly complex process called “islet isolation.” The islets are then infused and lodged into the liver of the recipient, where they are able to detect the level of glucose in the blood and produce the correct amount of insulin. Recent advances in islet isolation have resulted in sustained insulin independence in people with type 1 diabetes, which may make islet transplantation more common in the foreseeable future.

10 Years and Still Diabetes Free – Islet Cell Transplant Patients Celebrate Anniversary of Life-Changing Procedure

islet-trans-patients“I feel free. I feel normal.” That’s what Emory Transplant Center patient Laura Cochran says of her life since having a pancreatic islet cell transplant to treat her brittle Type 1 diabetes.

Last week, Cochran, along with the Emory Transplant Center team and fellow patient Rob Allen, gathered to celebrate the 10-year anniversary of their participation in a clinical trial for their severe Type 1 diabetes. Type 1 diabetes is an autoimmune disease in which the pancreas ceases to produce insulin, a hormone that allows people to get energy from food. Type 1 diabetics must take insulin every day to live.

Both Cochran and Allen were diagnosed with Type 1 diabetes as young adults. Allen’s diabetes was controlled with insulin injections for about 10 years until his episodes of low blood sugar became more frequent and more severe. As for Cochran, as her diabetes progressed, she developed hypoglycemia unawareness, where her blood sugar would drop so low so quickly, that she didn’t recognize how low her sugars were. She often became dazed during these episodes and had to be watched at all times. While both benefitted some from insulin pumps, they still needed more relief. Fortunately, they were candidates for a clinical trial at Emory where donor pancreatic islet cells were transplanted to restore insulin production in people with Type 1 diabetes.

Cochran and Allen each received two islet cell transplants from two different organ donors, several months apart. After the first transplant, they both still needed small amounts of insulin injections. After the second transplant, neither Cochran nor Allen needed insulin injections. Both have been insulin free since 2004.

“We transplanted just two teaspoons of islet cells into these patients 10 years ago, and they no longer need insulin injections,” says Christian Larsen, MD, DPhil, professor of surgery in the Division of Transplantation at Emory, and dean of Emory University School of Medicine. “This has been a miraculous transformation.”

Researchers are awaiting FDA approval of islet cell transplants so that the surgery will no longer be experimental. Once approval is obtained, surgeons can perform these transplants on patients who meet the criteria.

“The best part about the islet cell transplants is not having to worry daily about my blood glucose levels getting out of control,” says Allen. “It has been an amazing thing.”

Related Resources

Emory Islet Transplant Program
Islet Transplant For Type 1 Diabetes? Julie Allred’s Story

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.”

Related Resources:

Celebrating the Gift of Life – Donate Life Month

Since 2003, April has served as National Donate Life Month and provided the health and transplant communities with an entire month of local, regional and national activities to help support and raise awareness around organ donation and celebrate those who have given the gift of life to others by donating. We’ve seen some amazing gifts of generosity here at Emory since National Donate Life Month last year, and in honor of the month, we’d like to celebrate those members of our community who have truly given of themselves in an effort to save the lives of others.

Pamela Emory Employee Living Donor

Pamela Lesane

We kicked off Donate Life Month last year with the help of Pamela Lesane, an Emory Healthcare employee and now patient, after making a very generous gift to her own sister. After beginning her career with Emory Healthcare in Guest Services, Pamela came into contact with a transplant coordinator who asked her if her sister, who had suffered from kidney disease all her life, had ever been evaluated for a transplant. She had not, so Pamela helped her push forward in getting evaluated and her sister was placed on the waiting list for a kidney transplant. It turned out Pamela would be a match for her sister’s transplant, and the rest is history. You can read more on Pamela’s story here.

Shortly after Pamela was able to help bring renewed life to her sister via organ donation, six lives at Emory were saved by as a result of a selfless donation from one man, Jon Pomenville, from Anderson, South Carolina. Imagine waking up one morning in good health and deciding out of the goodness of your heart to donate your kidney to someone you didn’t even know – anyone, anywhere. That’s exactly what Jon did and he wasn’t looking for credit. In fact he was completely comfortable with remaining anonymous throughout the process. But during a follow-up visit to Emory University Hospital, Jon met many of the individuals whose lives he helped change – right there in the transplant clinic waiting room. Jon and four of the other donors and recipients in what is referred to as a paired kidney transplant were coincidentally scheduled for follow-up appointments within a short period of time of one another. It was only a matter of minutes before the patients – recipients and donors – two father and son combinations and Jon, the man who would give to anyone – were hugging, shaking hands, and recounting their lives and experiences. As one person began recounting the experience, eyes and ears began to focus on the tale being told from across a crowded room. Share Jon’s story.

Lester Crowell

Lester Crowell

Many of our transplant community members are recipients of organ donations themselves and have opted to find ways to give back to others in need. Lester Crowell, is a fantastic example of an Emory Transplant patient who took giving back to a whole new level. Lester is a two-time recipient of a donated heart, and as a heart transplant patient, he shared the love in a major way by holding an event to help raise awareness and over $30,000 for the Georgia Transplant Foundation. Check out Lester’s story in this video and blog post.

Kevin Jordan Wake Forest Kidney Transplant at Emory

Coach Tom Walter & Kevin Jordan

We’ve seen family members give to family members, anonymous givers donate life to change the lives of others, and a transplant patient who gave back to the community, but one story, that of Kevin Jordan and Coach Tom Walter of Wake Forest University was an especially touching one for us here at Emory. In February of 2011, we shared Part I of their story. To bring you up to speed, Kevin was diagnosed with ANCA vasculitis, an autoimmune disorder that typically leads to almost immediate kidney failure. At the time, Kevin was an all-star baseball player being actively recruited by both Wake Forest University (WFU) and Auburn, but he was faced with an illness that could potentially change his future not only in baseball, but in life. Kevin opted to join the crew at Wake Forest, but as his condition worsened, it became clear to both Kevin and Coach Tom that something would need to be done. Kevin was in desperate need of a new kidney, and when neither his mother nor father met matching criteria to serve as a living donor, Coach Tom volunteered to be tested as a match. A match he was, and the story is pretty much a fairytale from there. Just months after joining the Wake Forest crew, Kevin and his coach would share a lifelong bond, making them family both on and off the field. In October of this year, just 7 months later, Kevin was able to return to practice at the sport he loves thanks to the generous gift of Coach Tom. Share their story here.

Clay Taber, Transplant Patient with Nurse Allison Batson

Clay Taber & Allison Batson

The giving back here at Emory continued when just a few months ago, our own transplant nurse, Allison Batson, gave of herself, literally, to 23-year-old patient, Clay Taber, who was in desperate need of a kidney transplant. “Immediately when Clay came onto our unit, he became a special patient that everyone just gravitated to,” said Allison Batson. “Here was this young man with everything in his life ahead of him, and he was fighting for his life. He quickly became friends of many of the staff, and really was just a tremendous inspiration to us all.” Allison continued to visit with Clay during his weeks at the hospital, and a deeper connection began to form than the typical nurse-patient bond. “She said ‘If you’ll let me do this, I want to donate my kidney to you,” Clay recalls. “Something at that point just hit me. There are so many people in need of an organ transplant and have been waiting like me – even longer than me in many cases. And here is Allison offering to do this amazing thing. When she said ‘If you’ll let me,’ there was just something in those words. I couldn’t say no.” Share Allison and Clay’s story here.

We are so grateful to the steps that have been taken by the Emory transplant community to celebrate and give the gift of life. Countless lives are changed at the Emory Transplant Center every year because of selfless gifts of those in our community. In honor of Donate Life Month, we will help to spotlight some of these very special stories in the weeks to come. If you have your own story to share, or just want to give thanks to those here who have given the gift of life, please use the comments section below.

Related Resources:

Transplant for Type 1 Diabetes? Julie Allred’s Story

Julie Allred, Islet Transplant Patient

Julie Allred

When Julie Allred heard that Emory was exploring alternate treatment options for patients with “brittle” or unstable type 1 diabetes, she didn’t realize that she would be the first to receive her transplant via a minimally invasive transplant technique in the interventional radiology suite at Emory Hospital, instead of the operating room.

Julie was diagnosed with type 1 diabetes at age 10. She got her first insulin pump in 1992 and has used several different types of pumps over the years. Despite her efforts to carefully watch her diet and test regularly, she developed many problems over the past couple of years with unstable hypoglycemia (low blood sugar).

Living with hypoglycemia affected Julie’s ability to do many of things she enjoyed. She was constantly worried about how she could or would be affected by the unpredictable changes in her blood sugar, including being caught unaware at night while asleep. Julie was never free—day or night—from the worry of a condition called hypoglycemic unawareness, which unpredictably causes unconsciousness.

“I wanted to have the transplant because I’ve seen so many changes in the treatment of diabetic patients over the years, from the first glucometers to new medications,” Julie says. She was placed on Emory’s islet transplant wait list in early July and received the call eight days later while at her dentist’s office on July 19, which was “a record for the shortest wait,” she notes.

Julie lives several hours from Atlanta in the Charlotte, NC, suburb of Concord, where she has worked as a nurse for the past 20 years in obstetrics and pediatrics. Julie made the trip to Atlanta for her islet transplant at Emory, which was performed by Dr. Kevin Kim, director of interventional radiology and image guided medicine, and Dr. Nicole Turgeon, kidney, pancreas and islet transplant surgeon.

“Our protocol is designed to treat patients who have had type 1 diabetes for at least five years and have experienced severe hypoglycemic unawareness,” reports Dr. Turgeon. She is principal investigator of the study and collaborated with Dr. Kim for more than a year to develop Emory’s protocol.

“We’re able to perform this type of transplant because of Dr. Kim’s expertise in image guided treatment of liver tumors in the interventional radiology suite and Emory’s experience in islet transplantation and the development of new treatment regimens to protect transplant grafts from rejection,” she says.

According to Dr. Kim, “The interventional radiology procedure involves a small access. We thread guidewires and catheters and a central line through the patient’s right side into the portal vein, which leads into the liver. The entire system is through a less than a quarter inch skin access, and there are no stitches required—only a bandage on her skin. There is no general anesthesia required, and the entire procedure is performed under moderate sedation. In fact, we were talking to Julie during the entire procedure.” The fragile islets implanted in Julie’s liver serve to take over the job of making insulin.

Julie Allred with her daughter at Disneyland

Julie with her daughter at Disneyland.

The conventional islet transplant involves a two- or three-inch incision in the abdomen. This open surgical approach can be painful, whereas, Julie experienced no side effects and took only one pain pill following her less invasive transplant.

Julie has been able to gradually taper her insulin from about 50 units a day pre-transplant to 8 to 11 units a day four weeks post-transplant. She is now free from the unpredictable changes in her blood sugar and has had no hypoglycemia.

“My doctor told my mother when I was first diagnosed that I wouldn’t live to age 30 or be able to have children. But because of these advances, I’ve been able to prove him wrong twice,” Julie chuckles. Thanks to the procedure, Julie was able to happily celebrate her daughter Meredith’s 16th birthday at Disney World in January of this year, and turned 43 years old on July 23rd, two days after her transplant.

A Mother-Daughter Transplant Story – Angie Dudley, Bakerella

There are many things a mother can pass along to her daughter, but it takes a unique generosity—not genes—for a mother to give her daughter a kidney. In June, Angie Dudley, owner of the blog, Bakerella, and creator of cake pops, received her second kidney transplant from none other than her own mother, Sandy Cunningham. Although this is not Angie’s first transplant experience, she says her mother has, from day one, offered to be her organ donor.

Transplant Patient Angie Dudley & Mother, Sandra Cunningham

Transplant patient, Angie Dudley, with her mother, Sandy Cunningham.

Angie was diagnosed with Focal Sclerosing Glomerulonephritis (FSGS) in April of 1991 after a routine doctor visit led to kidney biopsy. It was found to be heavily scarred, and by October, Angie was undergoing dialysis and on the waiting list for a kidney transplant.

“My mom was very proactive in trying to get on the [donor] list,” Angie said, but doctors suggested they wait for a kidney from a cadaver. “I didn’t want to make my mom go through that because they told me in half the cases of my disease, it reoccurs.”

After 10 months of continuing peritoneal dialysis—all while attending college and working part-time— Angie received her first kidney transplant at just 20 years old.

Dr. Christian Larsen, MD, PhD, performed both of Angie’s transplants. “I was so happy with what [Dr. Larsen] did,” Angie said. She was glad to see that the incisions from her first surgery healed with minimal scarring, which she attributed to Larsen’s thoughtfulness. But she didn’t expect that after nearly 19 years of health, Larsen would have to operate on her again.

Near the end of 2010, things took a turn when Angie’s symptoms resurfaced. Doctors determined she would likely need a second kidney transplant.

“I guess I really thought my kidney would last as long as I would,” Dudley said. “It was kind of overwhelming emotionally to think about losing it because it had been with me for so long. I didn’t want it to go bad not because I wouldn’t be willing to have another kidney, but there was a life sacrificed for that.”

Her mother had already begun emailing doctors again, seeking approval to be Angie’s organ donor. “This time [my mom] was adamant about being the donor,” Angie said. “I don’t think I could’ve stopped her if I wanted to.”

After taking various tests and retests, Sandy Cunningham finally received the news she’d been waiting for: She was approved be her daughter’s kidney donor. “That was just the most awesome day of my life,” Sandy said. “It still is.”

On June 14, both mother and daughter underwent surgery for the transplant. “I was most worried about my mom being the donor,” Angie said. “I didn’t want anything to happen to her.”

Angie’s mom, on the other hand, was confident. “While I might’ve been nervous, I pushed it all aside because that was the very best resource that we had,” she said. “We were doing the best thing we could do. Had I died doing that, it would have been fine. I truly feel that way, and I would do it again.” But her daughter objects, “I would go on dialysis again if there was any risk of that,” she insisted.

Knowing she wouldn’t be able to walk for a few days, Angie insisted on seeing her mother right after the surgery. “[The staff] wanted to take me to my room, and I said, ‘No, wheel my bed into her room so I can see her.’”

Dr. Nicole Turgeon, MD, assistant professor of surgery at the Emory Clinic, operated on Angie’s mother and said Sandy couldn’t have had a better donor. “The bond that these two share was very striking,” she noted. “The love they have for each other is remarkable.”

Dr. Turgeon also commended Angie for her accomplishments as a baker. “[She] does some really neat things with Bakerella,” Turgeon said. “The fact that she can have kidney disease and still be so creative and contribute to society in such a way that you would never know she even had kidney disease is what was most striking to me.” Dudley began blogging in 2007, but her Bakerella site went viral after she posted pictures of her cake pops, an adorably enticing treat she concocted herself. Since then, her aptitude for creative baking has landed her on the Martha Stewart Show, as a judge in various baking competitions, and even on the red carpet at the Emmys, thanks to Duncan Hines.

Angie’s website, www.bakerella.com, receives almost three million page-views each month, and she also published a a New York Times best-selling book, appropriately titled Cake Pops, which will soon be available in four different languages.

Not surprisingly, her mother’s generous nature reflects in Angie’s work. “What turned into something for me has turned into something to give other people,” she stated.

“How much her mom was willing to promote and care for her…was probably a big part of why she was successful and had the ability to live a normal life despite having kidney disease,” Turgeon said of Angie. “I think that’s a tribute to her mom.”

And no matter how succsesful she becomes, Angie agrees that she will, first and foremost, always be her mother’s beloved daughter.