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  5. A Life with Type 1 Diabetes Turned Around by Islet Transplantation

A Life with Type 1 Diabetes Turned Around by Islet Transplantation

Ed Augustin and his daughter Jill
Ed Augustin and his daughter Jill

December 4, 2011, 7:04 am. It’s a date that Edward (Ed) Augustin won’t forget. That morning, Ed woke up at the University of Illinois Medical Center in Chicago a changed man. For the first time he could remember, Ed didn’t have to worry about his type 1 diabetes. He had just received a transplant of insulin-producing islet cells. “I’m ecstatic,” he exclaims, “I’m the luckiest guy in the whole universe. There are just not words that I can say to tell you how happy I am.”

Ed wasn’t always so happy. When he was a young child, he explains, “My mom noticed that something was wrong. I was thirsty and going to the bathroom all of the time. Finally, one day, she said we’re going to go get a blood test.” He was diagnosed with type 1 diabetes when he was only 5 years old. Ed spent a week in the hospital learning about his new life of diets and insulin shots. “It was horrible,” he recalls. “The only time I’ve ever seen my dad cry was when they told me you’ve got to go to the hospital.”

Type 1 diabetes is an autoimmune disease in which a person’s immune system destroys the cells that make insulin. These cells are found in the pancreas in clusters called islets. People with the disease must carefully monitor their blood sugar (glucose) levels and administer insulin. Without insulin, the cells of the body starve, while the excess sugar in the blood can, over time, lead to devastating complications of the eyes, kidneys, nerves, and heart. Too much insulin, however, can cause blood sugar levels to fall dangerously low, a condition called hypoglycemia, which can lead to confusion, difficulty in awakening, loss of consciousness, seizures, and death. It is very difficult for people with type 1 diabetes to achieve a balance between too much sugar in the blood and too little; it was even more difficult when Ed was diagnosed over 50 years ago, before the development of advanced medical technologies.

Life with Type 1 Diabetes

In 1961, life for people with type 1 diabetes was different from the way it is now. Ed’s parents were told he would only live for another 5 years. Fortunately, he was too young to understand—and he defied those odds. He went on a strict, measured diet. “Never again was I to have sugar. When I went into the hospital for the first time, my mom bought me a fudge sundae and said: ‘This is your last fudge sundae.’”

Ed’s sugar levels were measured with urine tests, a procedure that, to this day, has been etched in his memory because he didn’t like doing them.

His family was vigilant in administering his shots of insulin, which at that time were given in glass syringes with insulin that had to be kept cold. “Mom watched me like a hawk,” he remembers. His parents also tried to teach him to give himself insulin shots, but “I didn’t want to learn because then I’d have to give myself a shot, and I didn’t want to take the shot,” he shares. So, Ed’s parents taught his siblings how to give insulin shots. “They taught my sister, and she’d give me a shot. They taught my brother, and he nailed me with a shot. And he liked it,” laughs Ed, “so I didn’t like it when he did it.”

When Ed had a hypoglycemic reaction, he’d lose control. He couldn’t think straight, couldn’t talk, couldn’t put words together. He would be completely disoriented.

Despite his family’s watchful care, Ed’s diabetes was particularly difficult to control, meaning that, even with his strict diet and insulin administration, Ed’s blood sugar levels varied wildly between very high and very low. Ed had hypoglycemic reactions, also known as “hypoglycemic episodes,” when his blood sugar got dangerously low. When Ed had a hypoglycemic reaction, he’d lose control. He couldn’t think straight, couldn’t talk, couldn’t put words together. He would be completely disoriented.

These episodes were especially difficult to manage when he wasn’t at home. As a child, he’d “know I was going down for the count because I’d sweat or see double.” But when he was playing in the schoolyard and began experiencing these symptoms, he’d need to eat something to raise his blood sugar levels, even sweets that weren’t part of his normal diet. “I’d just hope I was close to a candy bar. If I was close to a candy bar, that was good. Sometimes, you had to get on your bike and go ride home to get the candy bar,” he remembers. Ed was the only kid with type 1 diabetes in his school and neighborhood, and he never told his classmates and friends what was going on. “You didn’t tell any of your friends because they’d think you’re weird,” he shares. “No one could understand how a kid can fall to the ground and not be able to run with the football anymore.”

Then, when Ed was about 13, those symptoms of low blood sugar disappeared. “One day it all just was gone. I never felt or saw them coming.” Ed began suffering from frequent periods of “hypoglycemia unawareness,” when people don’t realize that their blood sugar levels are dangerously low, preventing them from eating sugar or taking medicine in response. He recalls an example while playing a football game in high school: “We were going to be undefeated, and we lost that game because I let a guy go 96 yards right down the sideline. It was an easy tackle, but I couldn’t even see him I was so blind.” This lack of awareness meant that Ed had no warning that he was in a dangerous situation. While many people with type 1 diabetes suffer from hypoglycemia, Ed’s condition was particularly severe. He was in a minority of people with type 1 diabetes who, for reasons not fully understood, have frequent severe hypoglycemia and hypoglycemia unawareness and for whom standard blood sugar control, even with today’s technology, is not sufficient.

As Ed became an adult and began work in construction, things got even worse. He’d be on a job, working fine, and then “all of a sudden I couldn’t lay out a stair. I couldn’t cut a roof. I couldn’t cut a sheet of plywood. I’d sit there and look at my tape measure. I’d have the measurements, but I just couldn’t find them on my tape measure,” he recalls. “I’d be walking on top of a 28-foot wall, and I wouldn’t know where I was.” Or he would go to the hardware store for something, but then couldn’t figure out what he was doing there. One time he found himself out of gas and parked in a stranger’s front yard with no recollection of how he got there. Even keeping a supply of sugar tablets nearby didn’t always help because he couldn’t get to them, couldn’t open them, or couldn’t remember what he was trying to do.

“My family was always scared,” he says. “They were always afraid that I was going to die.”

All of this took a toll on Ed’s family and co-workers. “My family was always scared,” he says. “They were always afraid that I was going to die. It got to where my wife and daughter would know [he was having a low sugar reaction] just by looking in my eyes or by the way I was talking on the phone.” They’d tell him: “Check your blood. Check your blood.” Ed shares, “You get tired of hearing ‘check your blood.’”

It wasn’t only recognizing Ed’s hypoglycemic reactions that affected his family and co-workers, but treating them as well. For example, when a low blood sugar reaction would strike “in the middle of the night, I’d be thrashing about in my bed,” Ed recounts, “and my wife—who has to go to work in the morning—would try to wake me up.” She would try to give him food or medicine to raise his blood sugar levels, but if she couldn’t, “she’d have to call the paramedics,” he says. At work Ed’s crew would also look out for him. “They were relying on me, and they’d walk into my office. I’d be out of it, and they’d have to tell me: ‘Ed, eat a candy bar.’” Despite all this, he remembers thinking: “It’s just life, and that’s how it’s going to be.”

Islet Transplantation: A Promising Treatment

Unbeknownst to Ed at the time, researchers at the nearby University of Illinois at Chicago were working with other researchers around the world on islet transplantation, a procedure that has the potential to restore blood sugar control to a person with type 1 diabetes, leading to insulin independence and reductions in episodes of hypoglycemia. In islet transplantation, the insulin producing islets from a deceased organ donor are purified from the other cells in the pancreas, processed to maintain their viability and promote engraftment, and infused into the liver of the recipient. Once implanted, the islets begin to make and release insulin in response to the body’s needs. This procedure may be preferable, for some people, to whole pancreas transplantation as it is less invasive, but the procedure is still considered experimental in the United States.

World experts in the field of islet transplantation, including researchers at the University of Illinois at Chicago, joined together to form the Clinical Islet Transplantation (CIT) consortium to move the field forward with innovative approaches and toward a more consistent procedure that could be approved by the U.S. Food and Drug Administration (FDA). This collaborative research group is led by the NIDDK and the National Institute of Allergy and Infectious Disease and is funded by the Special Statutory Funding Program for Type 1 Diabetes Research.

Ed was driving in his car when he heard a radio advertisement recruiting participants for CIT studies at the University of Illinois at Chicago. “I was listening to the sports scores…and [the ad said]: ‘If you want to be cured of diabetes, give us a call.’ And I figured, yeah right. I’ve had this for 48 years. There’s no way,” remembers Ed. But 5 minutes later he got a call from his brother who had heard the same ad and encouraged him to call.

Ed had to go through a rigorous screening process before being selected for the procedure. The doctors needed to confirm that Ed’s diabetes was so uncontrollable with standard insulin therapy that the benefits of the transplant would outweigh the potential risks. The risks include those associated with the transplant procedure (e.g., bleeding and blood clots) as well as those associated with the immunosuppressive medications that transplant recipients must take to stop the immune system from rejecting the transplanted islets. Immunosuppressive medications have significant side effects, and their long-term effects are still not fully known. Immediate side effects may include mouth sores and gastrointestinal problems, decreased kidney function, and increased susceptibility to bacterial and viral infections and cancer. In addition, there is currently no guarantee that the transplanted islets will work long-term; previous transplant recipients have lost insulin independence over time.

For the majority of people with type 1 diabetes, whose diabetes can be controlled with the ever-improving technologies that are available for managing their disease (such as advanced glucose monitors and improved forms of insulin), the risk of side effects from the immunosuppressive medications may outweigh the benefits of the transplant. Therefore, most people with type 1 diabetes are not candidates for islet transplantation. But, for people like Ed who have frequent severe hypoglycemia and hypoglycemia unawareness, the benefits of the transplant may outweigh the risks of having to take immunosuppressive medicines. The benefits might also outweigh the risks for people who have received, or who will receive, a kidney transplant and thus will need to take the immunosuppressive medications for that transplant. Islet transplantation could also be beneficial for some people who don’t have type 1 diabetes—people who have had their pancreas removed due to severe pancreatitis. In this case, people could receive their own islets, rescued from any remaining healthy tissue, and not need immunosuppressive medication.

The researchers determined that the benefits of the transplant outweighed the risks for Ed, so he was eligible to enroll in the trial. For him, it was an easy decision to participate. “I didn’t even think about it,” he confesses, “I was getting cured. This is a huge gift. How could I ever turn that down? I was thinking about no shots, no passing out. Where do I sign?”

Then began the wait for a deceased donor pancreas that would be a match for Ed. He was told that the call could come at any time, so he would need to be ready to go at a moment’s notice and have a bag packed with everything he’d need for the hospital. “When you’re first doing it,” he remembers, “you think about it every day and night. I’ve got to have this, I’ve got to have that.” But, the suitcase sat in Ed’s bedroom for a year. He remembers that, after waiting for a while, he stopped thinking about it as much and began to assume that he wouldn’t get the call. But then, one night that changed: “All of sudden I got a call, and [the study staff said] ‘NOW. You must be here now,’” says Ed. The researchers had islets ready to transplant into him.

A New Life

After his transplant, Ed says: “It’s so magnificent, a miracle, fantastic. Never in my lifetime did I see this coming... Not only do I feel great, but my family, co-workers, friends… they’re feeling better because they don’t have to worry about me anymore.”

Two months after the first transplant, Ed had a second islet transplant, which is not unusual. Since then, he has been insulin free, meaning that he has not needed to take insulin shots, and he no longer suffers from hypoglycemia unawareness. His life has been forever changed. “You guys don’t know what you’ve got,” he says. “I never knew what I could have had. I was 5 years old. All I remember was shots and shots, and lows and highs, and passing out here, and walking until I dropped.” And now, after his transplant, Ed says: “It’s so magnificent, a miracle, fantastic. Never in my lifetime did I see this coming. I don’t have to worry about not waking up. I can drive, and I don’t have to test my blood at stop lights. [This] turned my life around.”

Ed’s participation in the CIT study has not only changed his life, but also the lives of those around him. “Not only do I feel great, but my family, co-workers, friends … they’re feeling better because they don’t have to worry about me anymore. Everyone was so relieved. They don’t have to watch me. They’re not afraid anymore. My co-workers have meetings through lunchtime now,” he laughs, grateful that he no longer has to schedule meetings around checking his blood sugar, taking an insulin shot, or eating.

Being part of a clinical trial is work, Ed says, “A lot of records, a lot of paperwork, and you have to show up at the times they tell you.” But, he is quick to encourage others to consider participating. He is eager to give back and help others with type 1 diabetes, having seen adult friends with the disease suffer from complications. “I’m not an angel diabetic,” he reflects, knowing firsthand how hard it is to check blood sugar levels continually, take insulin shots regularly, and watch what you eat diligently. “But I think I’m really like most people out there. I’d love to help other people like that and get them to understand that there’s a way we can get over the hump.”

For now, islet transplantation is still an experimental procedure, only allowed by the FDA as part of research trials. By developing a standardized procedure for the production of the islets for transplantation and working closely with the FDA to determine whether that procedure conducted by researchers at multiple medical centers can lead to improved blood sugar control in people with type 1 diabetes, the CIT consortium is paving the way toward making this procedure more widely available. If the research conducted by CIT is successful and leads to FDA approval, then islet transplantation would no longer be considered experimental. There will still be challenges, however, including one that Ed is hopeful will be overcome: the shortage of donated pancreata. “I hope that more people donate their organs,” he shares. Beyond that, Ed is hopeful for a future without type 1 diabetes, one in which the disease is prevented outright and the devastating hypoglycemia and complications don’t occur. “It would be huge,” he says of preventing the disease.

To everyone involved with the islet transplantation procedures, Ed says, “You’ve given me a great, big gift. I can’t thank you enough. My family and co-workers can’t thank you enough.”

Ed is so grateful and thankful to everyone involved in the trial, especially the families and friends of the deceased donors who provided the pancreata. “I think about them all the time,” he shares. “I say a prayer, and I thank those people whoever they are. I thank them, their families, and their friends, every morning and every night. I want to tell them how it saved my life. I want to give them a hug. I want to take them out to dinner.” He’d like to tell them: “You’ve given me a great, big gift. I can’t thank you enough. My family and co-workers can’t thank you enough.” Ed feels very fortunate to have participated in the CIT study and to have received this “gift.” “I want to thank everyone—the people who do this: the researchers, those people who you don’t even see - the ones breaking the pancreas apart and taking the cells - the nurses who work really hard and care, and the doctors. And my family. I’d like to thank all of them.”

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This content is provided as a service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), part of the National Institutes of Health. The NIDDK translates and disseminates research findings through its clearinghouses and education programs to increase knowledge and understanding about health and disease among patients, health professionals, and the public. Content produced by the NIDDK is carefully reviewed by NIDDK scientists and other experts.