“My bone marrow transplant was the worst and the best time of my life.”

That’s how Jordan Lambropoulos describes her ground-breaking stem cell transplant now that she has another year of living under her belt.

Bone marrow or stem cell transplants are nothing new, so what makes Jordy’s transplant so ground-breaking? Well, as far as she is aware, hers is the first BMT for Crohn’s disease in Australia.

In September 2022, Jordy wrote in a social media post:

It’s been a good while since I’ve posted and just wanted to share a little update – the last month has been an incredibly challenging time. 10 days ago I underwent my 6th surgery since April and am now adjusting to life with my colostomy bag. Overall, I’m coping and hanging in there – enjoying being home with my family!🌸

The next step? I’m in need of a Stem Cell Transplant as a last resort to treat my Crohn’s. We had to divert my bowel to an ostomy because the disease in my perianal region increased my chances of dying during the transplant to 5-10%. So the hope is that by diverting me, that risk won’t be as high!

What is Crohn’s Disease?

Crohn’s Disease is an autoimmune disorder, where the body’s defence system mistakenly attacks itself. It’s a type of inflammatory bowel disease and is marked by severe inflammation of the entire digestive tract (anywhere from mouth all the way through to the anus at other end) that can bring with it malnutrition, abdominal pain, diarrhoea, fatigue and severe weightloss. And Jordy has never known anything different: she has been dealing with Crohn’s her whole life.

Crohn’s is one of those diseases that is usually managed, and most people with Crohn’s Disease learn to deal with their symptoms, and live long and full lives. In Jordy’s case, however, the disease is so aggressive that she has spent vast swathes of time in hospital, having multiple bowel surgeries. Steroids are also used in the management of Crohn’s, but they had stopped working for Jordy, too. By the time Arrow came to hear of Jordy, she had had so many bowel resections (because of heavy scarring caused by Crohn’s) that she was running out of small intestine… and options!

Jordy and her team began looking for alternative approaches to give her a chance to survive, and they read about teams overseas who had successfully used autologous stem cell transplants to ‘re-set’ the immune system in an attempt to stop it continually mistakenly attacking the patient’s own body.

“At 24 years old I pictured myself with children and studying medicine – not fighting for my life and waiting for a lifesaving transplant,” Jordy said.

In the middle of 2023, after years of planning, Jordy and her mum left the rest of the family (Dad and three younger siblings) at home and moved from Adelaide to Sydney to start the long and frightening process of preparing for an autologous stem cell transplant. Although she kept it to herself at the time, Jordy’s mum was preparing herself for the fact that she might never bring her daughter home again.

The “conditioning” phase & the transplant

“Conditioning” is the term (some might say ‘euphemism’) used for the period of intense chemotherapy that prepares a patient for stem cell transplant, and it can be a rough ride. It certainly was for Jordy. If there was a complication to be had, she had it, from steroid-induced psychosis to allergic reactions, to liver problems, to pneumonia. She was no stranger to the intensive care unit, and she hadn’t even had her transplant yet.

Jordy and her mum were still excited for her transplant, and were planning a celebration of the event with a room full of balloons, but the transplant itself was also in ICU. No balloons. No party… but they were hopeful that this would be the event that would allow Jordy to keep on living.

Within 24 hours, though, Jordy was out of ICU, back in her room on the ward, alone, frightened, and convinced she was dying. So convinced, in fact, that she recorded a farewell video for her family and friends. Somehow, though, Jordy’s body pulled through, and she started the process of clawing her way back to, well not just life, but living.

What helped pull her through?

Jordy made a pact with herself that she would move every day. She insisted on being upright as much as possible, rather than lying down. She walked every day, with an aim of four laps of the ward and was also a daily visitor to the physiotherapist’s office where there was an exercise bike. Three to six minutes of pedaling, and then a walk back to her room ensured even more daily activity.

It wasn’t just the physical benefits Jordy was after, but also the psychological: “If I’m moving, I’m alive, and each step I take is a step towards recovery.”

Two weeks later Jordy left the hospital and went to her accommodation in an apartment almost directly across the road, where she and her mum would stay for about 5 months.

Although Jordy was extremely immunocompromised, they walked every day, avoiding anywhere that they might be likely to encounter crowds. “I fell in love with Sydney,” Jordy said. “And I had time with my mum, and my dad came over towards the end so mum could go home and be with my siblings, so I got to spend time with him, too. That’s precious to me, and something I’m grateful for. And the other interesting thing that happened was that I actually got to be sick.

“It’s a weird thing, living with a chronic and debilitating disease like Crohn’s. It’s all hidden away inside. You’re sick, but you don’t look sick. With the bone marrow transplant I lost all my hair, had it all shaved off by a local salon (ironically named The Last Strand) and I started to look really unwell. It was kind of like my outsides started to reflect my internal reality. I looked sick, and it was a relief in a way. I could finally allow myself to rest.

With rest and support from her family, Jordy continued to improve and discovered a new lease on life. The night of her transplant — day zero — lying alone in her hospital room recording a farewell video was the lowest Jordy has ever been before or since. But for Jordy it was also the beginning of a ‘new’ life.

“Every extra day that I have after that day zero is a blessing. I said goodbye to the old me that day. And the new me? She glows from the inside out. I enjoy the little things: the walks, the coffee, the wind in my hair. Every day feels like Christmas to me, like I get to unwrap presents each day. And it’s ‘presence’ that I have received through the experience of stem cell transplant.”

And now?

Now Jordy is a year post transplant, and taking a trip to Sydney to celebrate the anniversary and having a trim for her newly regrown hair at that same salon in Potts Point. She is returning to work and study (Information Technology and Cyber Security), and is grateful to be alive. “Not that long ago I was convinced I wouldn’t make it through the night to see my mum in the morning, and now I’m living! And I’m grateful to Arrow, too. Having to move interstate for life-saving treatment is no small task, and the help we received from Arrow and their supporters — the grocery and Uber vouchers — was an absolute godsend. It made such a difference knowing that we had some money to help us get by during what was seriously one of the toughest things I’ve ever been through.”

And she’s been through a lot.

If you’d like to help Arrow help people like Jordy and her family, donate today.