Part I: Who I Am – My Life, Strengths, and Connection to the Community
Jon reflects on what it takes to revisit her journey, saying, “One has to go back in memory and reactivate the process that one went through.” It isn’t easy. But she knows it’s important.
At the age of 78, Jon was, by all standards, someone who considered herself “reasonably fit.” She was actively strength training once or twice a week alongside people half her age. Her strength and resilience didn’t develop overnight; they had been honed through life’s challenges, one of which occurred four years prior when she discovered she had a faulty parathyroid gland.
“This gland regulates the amount of calcium in our body. My faulty gland was robbing my body of calcium,” she explains. “I had aching bones, aching bones from morning to night.” When the aching became intolerable, Jon went to her GP, who ordered blood tests, leading to a diagnosis. “I had the gland removed, made a quick recovery, and commenced training as suggested by my chiropractor.” That tenacity defined her—if there was a solution, Jon would find it and put it into practice.
Then, subtle changes began to appear during her workouts. “I started to become breathless, even though I considered myself quite fit for my age,” she recalls. The weight began dropping too—around three kilos gone, almost unnoticed. Her trainer suggested it could be due to more challenging workouts, but Jon wasn’t convinced.
During this time, she and her husband, Peter, were planning a trip to Sweden for Christmas. “Peter is a Swede, and we have only visited Sweden in the summer,” Jon shares. “I was keen to experience a Swedish Christmas in winter.” As a precaution before the trip, she decided to do blood tests. What followed was the beginning of a new chapter, one that would change her life and test her inner strength like never before.
“I was told by my doctor to have a CT scan,” Jon recalls. At the scan, they immediately called her doctor and recommended an MRI. “My doctor told me I had a blockage in my bile duct, and my liver function tests were frightening.” She remembers the blunt words clearly: “He said I was one month away from jaundice and six months away from death.” Her iron and hemoglobin levels were critically low, explaining her breathlessness.
As a trained nursing sister from years past, Jon had never encountered this disease. “I can only assume that I am an optimist by nature, as I was scared but positive,” she admits. Facing the unknown, she clung to a piece of advice that would become her mantra: “Go for treatment where the EXPERIENCE is.”
Part II: Facing the Diagnosis – Trusting Instincts and Seeking the Right Help
Facing the Diagnosis Head-On and Trusting the Right Guide.
Her GP recommended a Melbourne surgeon. “He was a very nice person,” Jon notes. But she couldn’t shake her concerns. “I considered him to be maybe a little old, only doing one operation per month, and I noticed when he walked, he had a bad back. I considered the length of the surgery and thought he would have a very stiff back!” So trusting her intuition, she hesitated to commit to surgery with him.
Then, fate intervened. “As luck would have it, my friend in Sydney called me to ask how I was. I told her my story,” Jon recalls. Her friend, a former intensive care professional, offered to connect Jon with someone who could help. “Forty minutes later, she called back and told me I had an appointment with Koroush Haghighi in Sydney the following week!”
Jon was apprehensive but hopeful. “I Googled Haghighi, and he sounded good.” She and her husband made the trip to Sydney. “He looked at my MRI and blood tests and said, ‘I can fix you!’ He told me how major the surgery was—a Whipple, which I had never heard of.” His confidence reassured her, and when he shared that he performed at least three Whipples a week, she knew this was the experience she was looking for.
After meeting Dr. Haghighi, she felt her fear subside. “If anyone could help, I felt he was the one. He was decisive, confident, and unafraid,” she recalls. The only requirement he had was for blood tests and an MRI; he didn’t ask for a biopsy, avoiding the potential spread of cancer—a detail Jon appreciated deeply.
Jon reflects on the strengths that had carried her to this point. “An acute awareness of the human frailties of those we look to for help in these extreme, life-or-death situations,” she says. Recognising the urgency, she knew waiting wasn’t an option. Dr. Haghighi’s experience matched her need for immediate action.
Part III: Overcoming the Lows – Finding Resilience in Dark Moments
Surgery was set for December 8, 2019, at the Prince of Wales in Randwick. Leading up to it, Jon busied herself with preparations, managing her business as a wholesale agent for fashion brands, arranging pet care, and organizing their household. “My husband is a violinist with the Melbourne Symphony Orchestra, and he was right there, my support,” she says.
The surgery went well, and her initial recovery in the hospital was smooth. “I didn’t have any complications, I was very well taken care of, and I had no pain. I was lucky,” she says. “I was longing to eat and wanted to get back to Melbourne for Christmas.” Dr. Haghighi reassured her husband that she was “all clear” with no further treatment required. “He had done a Whipple and taken a lesion from my liver, which concerned me, but once again, he was confident,” she says.
The real challenges began once she left the hospital. “When I was discharged, we stayed in a motel opposite the hospital for a few days,” Jon recounts. Dr. Haghighi gave her the green light to return home, but the journey was grueling. “The flight back was too hard. Walking to the taxi at the airport killed me. We should have stayed in the motel and spent Christmas there.” Back home, she faced a host of symptoms: she couldn’t eat, her mouth was sore, and her weight dropped significantly. “I asked my husband to take a photo of my tongue as it was burning. We sent the photo to Dr. Haghighi, who immediately said I had thrush from all the antibiotics.”
It was Boxing Day—a tough time to find a doctor, so they went to Cabrini Hospital, where tests confirmed thrush. “I returned home at around 2 a.m., so thin I looked aged overnight. My poor husband didn’t know what to do with me,” she recalls.
All she could eat was “miso soup, green beans, and watermelon—not exactly fattening food.” Slowly, she began eating small portions of porridge, potatoes, and other soft foods. “I had lost around 12 kilos in weight, down to 46 kilos. Putting on weight was a major task for me. It took six months to achieve that goal.”
Part IV: Building a Legacy of Strength
With time and determination, Jon regained her weight and even began training again. “I started training again after about two months. I had lost all my muscle and had no fat on my body. My muscle loss was startling, and at my age, even more startling!”
Reaching this point wasn’t just a personal achievement; it was a journey she knew could help others. “I hope that anyone reading this will find something they can relate to,” Jon reflects. Her advice? “Trust your instincts. If you’re unsure, get another opinion.”
Today, Jon keeps watch over her health. “I’m always on guard, watching myself and staying alert to any changes.” Her hope is that others learn from her experience: “Always seek the best information and most experienced people.”
Part V: Defining My Own Path Beyond the Prognosis
From the moment her GP told her she had six months to live without surgery, Jon made up her mind to beat the odds. “This is my temperament, but it was also a decision I made. I was not ready to give in to my misfortune.”
Her recovery was a lesson in patience and resilience. “My husband and I have always loved food, so I cooked with pleasure,” she shares. Following a mostly vegetarian diet, she re-learned cooking and eating at the age of 80, managing blood sugar with bananas and protein bars as needed.
Now, at 83, she’s stronger than ever. “I train twice a week, once with strength training, and I started Functional Patterns. It addresses the system, not just the symptoms.” Although she hasn’t been able to see Dr. Haghighi in person due to COVID-19, they remain in touch. “It’s been nearly five years since my surgery.”
Still running her business, she’s found meaning and motivation in work. “It keeps me alive and interested in life.” Reflecting on her journey, she says, “I will never feel totally normal; the surgery is so invasive. But I am alive and treasure each day as a gift.”
Her first thought after waking from surgery sums up her approach to life: “I am alive; I am here. Now it is my responsibility to make this work.”
Five years later, Jon’s journey is a beacon of resilience, defiance, and choice—a reminder that even in the darkest moments, there is light, and sometimes, it’s simply the decision to face each day with courage.
Not so good at selfies but here we are!
Peter and Jon
A Note of Gratitude
Jon, thank you for sharing your story, your insights, and your unwavering resilience. Your generosity in allowing us into your life—through your experiences, your wisdom, and your strength—offers not just inspiration but a profound uplift for those who follow in similar footsteps. Your words serve as a light, a guide, and a reminder that even in the face of uncertainty, there is immeasurable strength within our willingness, a pathway within our hope, and courage through our perseverance.
Thank you, Jon, for making your journey a source of strength for so many.
Warmest regards,
Steve
Do you have a story to share?
Email Steve@Cholangio.org
(Subject – My Caregiver/Patient Story)
