At 38, Liesanne leads a life that appears, on the surface, to be one of modern Amsterdam success. She manages a data department at ABN Amro, travels frequently, and maintains a rigorous fitness routine. But for nearly three decades, her existence was defined by a relentless, minute-by-minute calculation of survival. Born into a family already familiar with the volatility of autoimmune disease, Liesanne spent the majority of her youth tethered to insulin injections and blood glucose monitors.
The turning point came at age 25, when a double transplant for type 1 diabetes—the simultaneous replacement of both a kidney and a pancreas—effectively ended her dependence on insulin. While the procedure removed the immediate threat of diabetic ketoacidosis and organ failure, it replaced one lifelong struggle with another: the precarious balance of living as an immunosuppressed patient.
For Liesanne, the trade-off was a calculation she made willingly. The transition from a life of constant medical surveillance to one of relative freedom was not instantaneous, but the result has been transformative. “My life has become a million times easier,” she says, reflecting on the liberation from the cognitive load of diabetes management.
The Weight of a Childhood Diagnosis
Liesanne was diagnosed with type 1 diabetes at age eight. The diagnosis was not a surprise; her brother had been living with the condition since age four. She recalls the suddenness of the transition—from a gym class at school to a hospital in Gouda—and the immediate realization of what her future would entail.
“I knew exactly what diabetes type 1 meant,” she remembers. “Four times a day injecting insulin, constantly pricking your blood sugar. That it takes over your life. It was very intense.”
While she maintained stability through early childhood, the onset of puberty introduced a chaotic variable: hormones. The biological volatility of her teenage years, combined with a desire to fit in with peers, led to a loss of glycemic control. This culminated in her first diabetic coma, a terrifying episode characterized by uncontrollable vomiting and a sensation of her body “burning” from the inside as her blood became acidic.
The coma left her with permanent neuropathic damage—nerve injury that causes chronic pain and numbness. By her early 20s, the systemic toll of uncontrolled blood sugar manifested as retinopathy, causing bleeding in her eyes, and eventually, the onset of kidney failure.
The Spiral Toward Organ Failure
Diabetic nephropathy, the gradual loss of kidney function due to diabetes, progressed rapidly for Liesanne. Within a few years, her kidney function plummeted from 60 percent to 30 percent, and finally to 17 percent. The resulting uremia—the buildup of toxins in the blood—left her in a state of constant nausea and severe anemia.
By age 25, her medical team proposed a dual solution: a simultaneous kidney and pancreas transplant. While a kidney transplant alone would have addressed the renal failure, adding a pancreas transplant offered the possibility of eliminating her diabetes entirely by restoring the body’s ability to produce insulin.
“My kidneys could no longer filter the toxins, which left me constantly nauseous and vomiting. I also developed severe anemia.”
Liesanne insisted on a deceased donor, unwilling to risk the health of a living relative. After a year of testing, she spent only one month on the transplant list—a rarity attributed to the scarcity of donors matching the specific requirements for a double transplant. She was working on her thesis at the Openbare Bibliotheek Amsterdam (OBA) when she received the call that organs were available.
The Price of a Second Chance
The surgery at LUMC in Leiden was successful, and the results were immediate. For the first time in 17 years, Liesanne’s blood sugar levels stabilized naturally. But, the “cure” for her diabetes introduced a new, complex set of constraints. To prevent her body from rejecting the foreign organs, she must take lifelong immunosuppressant medications.
These drugs effectively disable her immune system, making her highly susceptible to opportunistic infections. A simple case of food poisoning can become a life-threatening emergency, as dehydration poses a direct risk to her transplanted kidney. This vulnerability requires a strict lifestyle regimen: avoiding raw fish, maintaining a cautious diet when traveling, and immediate hospitalization at the first sign of a fever.
The physical and emotional toll remains significant. Earlier this year, Liesanne spent several months cycling in and out of the hospital due to medication side effects. She suffered severe weight loss—dropping 12 kilograms—and lost the ability to walk for a period. During this crisis, she admits to questioning if the struggle was still worth it.
Defining Resilience
Despite the recurring hospitalizations, Liesanne rejects the label of “strong.” To her, survival is not about courage, but about adaptation. “People say they locate it impressive that I head through all this,” she says. “I would have preferred not to experience it, of course. But when it happens, you have to learn to live with it. And then you have to keep going.”
Her resilience is evident in her refusal to let her medical history shrink her world. She continues to travel, though she carries detailed medical dossiers and physician letters to ensure she can receive care in foreign hospitals. She has also taken an unconventional approach to her chronic pain; after a decade of using methadone to manage her neuropathy, she chose to quit the medication “cold turkey”—a decision she acknowledges is not medical advice, but one that she felt was necessary for her own autonomy.
Liesanne’s journey highlights the complexities of organ transplantation. While the double transplant solved the immediate crisis of diabetes and kidney failure, it created a permanent state of medical fragility. Yet, for Liesanne, the ability to wake up without calculating her insulin dose is a victory that outweighs the risks.
Disclaimer: This article is for informational purposes only and does not constitute medical advice. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
Liesanne continues to monitor her organ health through regular screenings at the hospital, with her next set of evaluations focusing on the long-term stability of her transplanted kidney and the management of her immunosuppressant dosage.
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