For people with Type 1 diabetes, it can feel as if life centers on their treatment regimen. With Type 1, the body’s pancreas doesn’t make insulin — a hormone vital in blood glucose, or blood sugar, control — as it should. So people must inject themselves with insulin several times daily or wear an insulin pump. And they must continually monitor their glucose levels around meals and activity to stave off harmful highs and lows.
Diabetes is the leading cause of chronic kidney failure. Patients with Type 1 diabetes in kidney failure must either get frequent dialysis treatments or undergo a kidney transplant to survive. The new kidney comes either from a living donor, such as a family member, or from a deceased donor once the patient goes on a waiting list.
Some Type 1 patients also undergo a pancreas transplant during or after the kidney procedure. By allowing the body to make its own insulin and regulate blood glucose, a pancreas transplant can potentially cure diabetes. And a select few patients who don’t have kidney problems qualify for a pancreas transplant alone. But the decision to have a pancreas transplant is complex.
Pancreas transplant is a major surgical procedure with risks and trade-offs. Complications include blood clots, bleeding, infection and pancreas failure or rejection. Patients with successful transplants may trade in their insulin syringes for anti-rejection pills they’ll need to take for the rest of their lives. Read on for what transplant experts and a patient have to say about organ transplants for diabetes and learn about a possible new breakthrough.
[Read: Living With Type 1 Diabetes — a Forgotten Disease.]
Tony DeRaimo, 45, of North Olmsted, Ohio, was diagnosed with Type 1 diabetes (then known as juvenile diabetes) at 7 years old. As a child, he started taking insulin injections twice a day. As an adult, he injected himself up to six times daily.
DeRaimo says his blood sugar was “erratic,” bouncing from high levels that wreaked havoc on his kidneys to sudden dangerous lows. By his late 20s, doctors told him he would eventually need a kidney and pancreas transplant.
One morning, as DeRaimo drove to work, an episode of low blood sugar led to potential disaster. As he felt it coming on, he says, his car hit a rock, knocked down a telephone poll and flipped. Somehow he escaped without injuries.
When DeRaimo reached his late 30s, his kidney function deteriorated to less than 20 percent. He was about to go on kidney dialysis, which he dreaded. Instead, he got the call that transplant organs were available. The next day, he received a kidney and pancreas from a deceased donor.
Twice previously, DeRaimo turned down the opportunity for the combined transplant because he felt intimidated by the risks. But now there wasn’t much choice. On March 27, 2010, DeRaimo had a combined kidney and pancreas transplant at Cleveland Clinic.
Double Transplant
For Dr. Betul Hatipoglu, an endocrinologist in the department of endocrinology, diabetes and metabolism at Cleveland Clinic, an important part of her role is evaluating which patients would be good candidates for transplant. If a person with diabetes needs a new kidney to survive, it could provide a window to receive a new pancreas at the same time — and potentially eliminate the need for insulin injections.
“If they have kidney failure and they are going for the kidney transplant, I strongly feel they should be evaluated for a pancreas transplant as well, because they will benefit,” Hatipolgu says.
“The risk for those patients, in general, still remains the same, because they are exposed to immunosuppressive drugs anyway with kidney transplant. Why not give them the opportunity to get a pancreas transplant?” Hatipolgu says.
Pancreas Transplant Alone
According to the United Network for Organ Sharing, 719 kidney-pancreas transplants and 228 pancreas transplants were performed in the U.S. in 2015. Pancreas transplant alone is usually not seen as an option for patients who don’t have serious complications and are controlling their insulin well.
“When it comes to pancreatic transplant alone, that is a little more delicate group of patients,” Hatipoglu says. “You are also giving them immunosuppressive drugs for the rest of their lives, and you have to weigh the benefits and risk more carefully than with someone who is going for kidney transplant anyway.”
However, she says, certain diabetes patients are ideal candidates for pancreas transplant alone. That could be someone who can no longer sense when their blood sugar is getting dangerously low, which is called “hypoglycemic unawareness.”
“They can get seizures — they might be driving and cause an accident,” Hatipoglu says. “They might not wake up in the morning because they had a low at night but could not feel it.”
She emphasizes that pancreas transplants are not recommended for otherwise healthy patients with good control of their diabetes. However, she says, that could change as the treatment keeps improving.
[Read: Life on an Organ Transplant Waiting List.]
The vast majority of pancreas transplants — about 80 percent — are combined with kidney transplants, and they’re almost always in patients with longstanding Type 1 diabetes, says Dr. Niraj Desai, a transplant surgeon with Johns Hopkins Comprehensive Transplant Center. Of other pancreas transplants, about half are performed after the kidney procedure, at a later date.
About 10 percent of patients get a pancreas transplant alone, Desai says. “Those are people with normal kidney function but difficult-to-control diabetes,” he says. “And it’s felt that the risk of a large operation and immunosuppression [with anti-rejection drugs] is warranted.”
Anti-rejection drugs, which suppress the body’s immune system to prevent rejection of a transplanted organ, come with significant side effects. “You are certainly going to be more susceptible to infection,” Desai says. “And there are certain kinds of infections that are more common in transplant recipients. Certain viruses, and even in some people, fungal infections.”
A pancreas transplant is slightly more complicated than a kidney transplant, Desai says. “But in general, [patients] do quite well,” he says. “They can recover very nicely and get back to a very normal life. But, of course, with the caveat that they’re going to be on medications and ongoing follow-up visits.” Up to 90 percent of pancreas grafts are still functioning a year later, he says, with a roughly 70 percent success rate after five years.
While getting a new kidney is more lifesaving, Desai says, the new pancreas makes the most dramatic lifestyle change. “Patients are kind of blown away by the fact that they’re not diabetic anymore,” Desai says. “Several have told me they don’t remember ever not being diabetic. They were so young when they were diagnosed — 3, 4 or 5 years old. It’s incredibly altering for them.”
[Read: 5 Myths and Misconceptions About Diabetes — Busted.]
DeRaimo’s kidney-pancreas transplant surgery went well. He stayed in the hospital about a week, then returned home and to work. However, an infection around his surgical drain put him back in the hospital for several days. And for months, he suffered from stomach and bowel problems due to certain medications, which were eventually adjusted.
His kidney-pancreas transplant passed the biggest test. His body accepted the new organs — and they worked. He was able to avoid kidney dialysis, and with his new pancreas producing insulin, his blood sugar levels remain steady and normal.
DeRaimo has had to take a staggering amount of anti-rejection and other medicine. “When I first started, I was probably taking between 40 and 50 pills a day,” he says. That gradually tapered down to a relatively reasonable 18 daily pills. “It’s a routine,” he says. “I used to have to take insulin shots — now I don’t have to.” That trade-off, he says, “is absolutely worth it.”
On the Horizon
The ability to self-manage diabetes continues to improve. “The technology for delivering insulin and sensing what the patient’s glucose is, and coupling that together in a sort of smart algorithm, keeps getting better,” Desai says.
A potential breakthrough could give people with diabetes a minimally invasive option — transplant using only the islet cells of the pancreas. Those are the cells that actually produce insulin. Instead of a surgical procedure, islet transplantation involves an intravenous drip to infuse donor islet cells into a vein in the patient’s body. Patients must still take anti-rejection drugs afterward.
While still considered experimental, islet transplantation for diabetes is not really new, says Dr. James Markmann, chief of transplant surgery at Massachusetts General Hospital. “People have been working on it 20 years,” he says. “But it’s finally working in a way that we think will help patients better.”
His team is part of the Clinical Islet Transplantation Consortium, a group of international centers completing clinical trials. Promising results from the new approach are soon to be published, Markmann says: “We hope the FDA approval will come this year.”
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Pancreas Transplant May Eliminate Injections for Some With Severe Diabetes originally appeared on usnews.com