“I hadn't realized how bad I’d felt for years until I woke up from my transplant and felt so good.”
Jessica Bonkoski was entering ninth grade when sudden weight loss led to a shocking diagnosis: she had Type 1 diabetes. Almost overnight, Jessica found herself juggling the norms of her 15-year-old life — school, homework, soccer, and friends — with the new challenges of a strict diet, checking blood sugar, insulin injections, and managing medical supplies.
"It was hard. I just wanted to be 'normal' and not have to deal with it; just be able to enjoy life, like my friends did," Jessica remembers.
Type 1 diabetes is not uncommon. More than 1.25 million Americans live with the disease, a chronic condition in which the pancreas produces little to no insulin. Insulin regulates the body's metabolism and determines how much glucose is in the blood at any given time — a crucial job. Patients with Type 1 diabetes have no built-in ability to regulate this function — hence the need for constant blood sugar checks and insulin injections.
Although Type 1 diabetes can usually be managed, many underestimate its burden and the havoc it can wreak on the body and spirit.
"It is a tough disease to manage, particularly when you are young," explains Dr. Ty Dunn, transplant surgeon. "Sometimes no matter how hard a patient tries to manage their blood sugar, it can be difficult to control."
This was the case for Jessica. At this point in her mid twenties, began experiencing a series of diabetes-induced health complications just a few years after her diagnosis. Jessica developed a sebaceous cyst that led to MRSA (Methicillin-resistant Staphylococcus aureus), a potentially fatal bacterial infection. Emergency surgery was required. Two years later, while she was in nursing school, a kidney abscess led to a serious kidney infection. Then, a year later in 2013, 26-year-old Jessica was hospitalized for an emergency appendectomy.
"It was frustrating. My health complications forced me to retake some of my nursing school classes, because I hadn't been healthy enough to take the finals. I just wanted to graduate and get started with my life." Amazingly, she did. Jessica graduated nursing school and was hired by Penn Medicine in 2014.
Putting Her Health in Penn's Hands
Now working at Penn Medicine, Jessica saw firsthand the quality of the care that patients received and decided to transfer her care to Penn's Rodebaugh Diabetes Center.
"My symptoms were always a bit atypical, and instead of wondering why I didn't fit the standard Type 1 diabetes profile, Penn treated me like an individual. I was Jessica, and these were my unique symptoms. Mary Jane McDevitt — the Nurse Practitioner I worked with — and all the Penn specialists, they treated me like a person, not a disease."
Not long after transferring her treatment to Penn Medicine, bloodwork revealed another somber reality: Jessica's glomerular filtration rate (GFR), an indication of kidney function, was a mere 8. According to the National Kidney Foundation, normal results range from 90 to 120.
"I remembered, from nursing school, that if the GFR was below 15, a person might need to start dialysis. I was so upset that my manager took me down to the hospital ER," Jessica remembers.
Her greatest fear was confirmed: She had stage 5 kidney failure, also known as end-stage renal disease. Jessica's kidneys, damaged from years of fluctuating glucose levels, were unable to remove waste from her body. Without life-sustaining dialysis or a transplant, she might only live a few weeks.
Jessica spent her 30th birthday at a dialysis center, learning how to administer at-home dialysis through her abdomen. But dialysis, however lifesaving, has its own drawbacks — including, on average, a shorter life span than patients who undergo successful kidney transplants. Jessica's nephrologist connected her with the team at the Penn Transplant Institute.
"I attended an all-day educational seminar, where I watched presentations about transplants, heard testimonials, and met surgeons, nurses, advisers, and coordinators," she remembers.
Soon after, Jessica successfully underwent all necessary transplant eligibility evaluations. She was added to the national transplant waiting list in hopes of receiving a healthy donor kidney. In the meantime, Jessica spent nine hours every night connected to a dialysis machine.
Ditching Dialysis for Two Transplanted Organs
It was around this time that Jessica was referred for consultation at the Penn Transplant Institute.
"I try to help diabetic patients understand that if they have advanced chronic kidney disease that the kidney transplant is their life-saving option — and that they have to avoid or get off of dialysis as soon as possible" Dr. Dunn says, explaining that the effects of prolonged dialysis can threaten a patient's eligibility for a healthy donor organ due to further health complications. "Not many people live more than ten years on dialysis. On the other hand, patients can expect, on average, 14 to 16 years of kidney function from a living donor kidney transplant. In low-risk patients who do well that first year following the transplant, and who really take care of themselves, that number can reach twenty years."
Dr. Dunn also stresses the value of a new pancreas in addition to a new kidney for eligible Type 1 diabetes patients. A successfully transplanted pancreas eliminates diabetes altogether, protecting the new kidneys against injury from diabetes. But even when patients like Jessica meet the standards for a transplant, a transplant isn't guaranteed — or easy. Dr. Dunn and Dr. Yvonne El Kassis, Jessica's transplant nephrologist, began preparing Jessica for transplant, managing her health while she waited, and educating her on the risks and recovery.
"I was nervous and skeptical about the double transplant but the transplant team answered all my questions," Jessica says. "Dr. Dunn really made me feel comfortable with the decision to pursue it."
A Shocking Setback
Then a serious infection in Jessica's foot brought transplant preparation to a near-halt. Because of the infection, Jessica needed a below the knee amputation (BKA) on her left leg.
"I remember being scared and upset. I was afraid that I would never be able to do some things again, like work, hanging out with friends, go out with friends or play with my nephew."
Still, she bravely moved forward. Jessica had her lower leg amputated from the mid-calf down in July of 2017. Jessica underwent intensive rehabilitation to learn how to use a prosthetic lower leg — therapy that continues to this day. And even as she was recovering, the diabetes-induced health issues kept coming.
"I experienced osteomyelitis, gastroparesis, cardiac arrest due to an electrical disturbance of the heart, defibrillator implant surgery, and also just the feeling of being sick and unhealthy from kidney failure." As soon as she was well enough, Jessica began preparing once again for the possibility of a double organ transplant.
Two New organs and a New Chance at Life
Finally, at 1:30 am on October 27th, 2019, Jessica got the call she had been waiting for.
"I actually slept through my cell phone ringing because I'd worked a twelve-hour shift the day before!" Jessica remembers with a laugh. "When they couldn't reach me, they called the house line. My sister came running into my room and woke me up saying, "Jessie, it's the Penn Transplant team!"
A healthy kidney and pancreas were being transported to Penn Medicine. Jessica needed to be there within an hour.
"My parents and I got dressed and rushed out the door."
Only a few hours later, Jessica underwent the 9-hour surgery, receiving a new pancreas and new kidneys through a simultaneous pancreas-kidney (SPK) transplant.
"I remember waking up from surgery, and even though I had pain and discomfort, I had never felt better. I always tell people: I hadn't realized how bad I'd felt for years until I woke up from my transplant and felt so good. By body was creating urine on its own for the first time in years. My blood sugar numbers were normal."
Jessica was discharged from the hospital eight days after her transplant but had to return to Penn Medicine when gastroparesis, caused by nerve damage stemming from years of dialysis, kept her from keeping down necessary medication. In the months following, there were two times when doctors were worried that her body might be rejecting the new organs. Thankfully, both cases turned out to be false alarms.
Post-Transplant — Feeling Good and Living Life to the Fullest
A little more than a year out from her transplant, Jessica returned to work at Penn Medicine and celebrated five years as a registered nurse.
"I feel great!" she says. "I didn't realize how bad I felt before. Now I am zipping down the halls!"
She is still under the close care of Penn Medicine transplant specialists, but continues to inspire them all.
As Dr. Dunn tells it, patients facing complex procedures like double transplants "need to have a spirit like Jessica to withstand a more intense recovery and be willing to take some additional risk to survive and live their life to the fullest."