'This Is Real Freedom': Islet Cell Transplant Helps One Woman Become Insulin Independent

Jodi Cruz was 16 years old when she first received her type 1 diabetes diagnosis. Because of her condition, she's had to monitor her blood sugar and take insulin several times a day for years. But over time, managing her condition became increasingly difficult, leading to low blood sugar episodes and long-term effects.

In an effort to improve her condition, Cruz spent 10 years contacting different research facilities offering clinical trials for experimental type 1 diabetes treatments. It wasn't until 2018 that she found any success. A friend suggested she reach out to City of Hope regarding a clinical trial involving islet cell transplantation. City of Hope, a leading medical research facility with multiple locations across California, is conducting a clinical trial that may allow individuals with type 1 diabetes to live life without insulin.

Cruz was the first to participate in their new islet cell transplant clinical trial for type 1 diabetes patients.

Before the Transplant

When Cruz had her youngest, and third, child in 2005, she experienced increasing difficulty managing her blood sugars. Her insulin pump, which usually kept her blood sugar from going too high, wasn't always able to prevent low blood sugar episodes.

“I would test my blood sugar sometimes eight to ten times per day,” Cruz tells Verywell. “As I got older, I stopped feeling the highs and lows, which meant that the people around me would have to know the symptoms. I carried a baggie filled with Life Savers everywhere I went because my sugar could go low at any minute. It scared my children, and I didn’t want to put that pressure on them.”

Cruz was also quickly beginning to experience some of the long-term effects of prolonged, poorly-controlled diabetes. “I was getting neuropathy in my feet. My last pregnancy was very high risk, and my kidneys started to fail,” Cruz says. She feared she might not live to see her three children graduate from school or have children of their own. “At that point, I started applying for every study I could find because I had a responsibility to be their mom.”

When Cruz first met Fouad R. Kandeel, MD, PhD, the director of the Islet Cell Transplantation Program at City of Hope, he offered her the choice to have a traditional islet cell transplant or be the first to participate in City of Hope’s new islet cell transplant clinical trial. She was first seen at City of Hope in January 2019 and qualified for study participation in May 2019. On July 7, 2019, Cruz received her islet cell transplant.

How Does Islet Cell Transplantation Work?

Islet cells, located within the pancreas, are responsible for producing a variety of hormones, including insulin.

According to Kandeel, islet cells are harvested from a deceased donor pancreas and infused directly into the recipient through the portal vein in the liver. The islet cells embed themselves into the liver, where they are able to produce insulin in response to the body’s blood sugar levels, and take over the recipient’s diseased islet cells’ function.

Unlike whole organ transplants, the islet cell infusion does not require major surgery. Recipients generally receive only light sedation and can usually leave the hospital one to five days after transplant.  Like other organ transplants, islet transplant recipients must take immunosuppressive (anti-rejection) medications to suppress the immune system’s ability to attack the donor cells.

Islet cell transplantation has been in development since 1972, but did not traditionally have a high long-term success rate, says Kandeel. In 2000, researchers at the University of Edmonton in Canada made adjustments to the immunosuppression medications used to prevent rejection of the donor islets cells and reported several individuals with type 1 diabetes able to discontinue insulin treatment for at least one year. However, by five years after transplant, less than 10% of people were still off insulin.

City of Hope wanted to improve those statistics, so they began islet cell transplantation in 2004, intending to improve blood sugar control and increase insulin independence. Adjustment of medications used to protect the islets before and after transplant have improved outcomes further. However, recipients still often need more than one transplant to get enough islet cells to stop insulin treatment. Even then, the transplanted islets can stop working over time.

Cruz was the first participant in a new clinical trial that aims to improve outcomes after a single islet transplant by administering a hormone called gastrin.

Gastrin is a natural gut hormone present in the pancreas during its development in the embryo. It participates in forming the normal pancreas. After birth, it is also secreted in the stomach to control stomach acid secretion. In early clinical trials, diabetic patients treated with gastrin and other growth factors required less insulin after four weeks of gastrin treatment. The effect lasted more than 12 weeks after stopping treatment, suggesting that gastrin may have increased the number of cells that make insulin.

Lab results from City of Hope scientists and others suggest that treating islets with gastrin can help protect the cells from damage and may increase the number of insulin-producing cells and improve how well they work.

City of Hope has approval from the U.S. Food and Drug Administration (FDA) to perform islet cell transplants with gastrin on twenty patients. Of the three individuals who have received islet cell transplants under this protocol so far, all are insulin free to date, including Cruz, who has been off insulin for a year and a half. Kandeel and his team are encouraged by these initial observations and continue to recruit study patients under this trial to confirm these findings.

Researchers at City of Hope believe that patients who receive gastrin will require fewer islet cells per transplant and fewer additional islet cell transplant procedures than participants treated without it to become insulin-free.

Meeting with the Donor's Family

When Cruz first learned she had a donor, she recalls asking the doctor to tell her more about who the donor was. All they could tell her was that he was an 18-year-old boy from the East Coast.

Cruz felt conflicting emotions. “At that moment, you're supposed to be excited, but I had an 18-year-old daughter at home," she says. "I thought, 'There's a mother out there that’s in a lot of pain. My joy is her sorrow.' As a mom, it hit too close to home.”

On Christmas Eve of 2019, Cruz received a letter from the family of her donor. She learned that her donor was named Thomas Smoot. He had graduated high school less than a month before an untimely accident took his life. “When I got the first letter, I lost my cool because my donor’s name was Thomas, and my son’s name is also Thomas,” Cruz says.

While corresponding, the two families discovered they had much more in common. “There was so much where we were united, and we didn’t even know each other," Cruz says. "There was so much I could relate to."

The families talked about meeting over Mother’s Day but canceled plans due to the COVID-19 pandemic. The two families eventually met via video call on November 10, which would have been Thomas’s 20th birthday. Cruz made Hershey pie, a favorite of Thomas’s, in honor of the event.

“It was so natural to talk to them," Cruz says. "I could see the pain in their eyes, but I loved hearing stories about him because I want to honor him. I wanted to share everything he has done for me.”

The families hope to meet in person once the pandemic is over.

Thomas’s mother, Stephanie Planton, says she never doubted whether Thomas would want to be an organ donor. “I didn't think twice about if he would object to it because that’s how he was too,” she tells Verywell.

Planton says deciding to donate Thomas’s organs also helped her feel a sense of creating something positive out of a difficult situation.

“I needed and wanted something good to come out of this, and I didn’t want anyone else to feel what I was feeling," Planton says. "It was the best way I knew how to try to make sure there wasn’t another mom or family member who would have to let their child or loved one go before you’re ready. Even if a family had just a couple extra days with their loved ones, I would call that success because that’s a couple of extra days that they wouldn’t have had otherwise.”

Life After Transplant

Since receiving her islet cell transplant, Cruz has been able to live her life freely without insulin. She's been able to let go of her worries over sudden blood sugar drops and the fear of eating foods she has not prepared. She's even indulged in pizza, hot fudge sundaes, and even her first Twinkie—all foods she could not eat before her transplant.

“This is real freedom,” Cruz says. “The other day, I sat down to eat. I didn’t think about it; I just ate. I thought I had forgotten something, and I realized it was not testing my blood sugar.”

Cruz adds that before her transplant, she avoided potlucks for fear of getting sick from eating food that she hadn't prepared. Now, she can shed that fear and participate. Travel has become easier now that she no longer needs to account for her insulin and needles.

“I would love to be able to talk to donors and recipients,” she says. “Dr. Kandeel wants to get the message out there. I’m ready at a moment’s notice to tell my story and give someone hope.”