My Aortic Surgery Story

Life can be easy for some and incredibly difficult for others. Sometimes, though, the right people, the right information and the courage to look beyond the obvious path can make an enormous difference.

I wanted to share my story because it was one of the biggest experiences of my life. If it helps even one person facing a similar situation to ask questions, research their options and feel a little less alone, then sharing it is worthwhile.

Until 2011, I never imagined that at such a young age I would find myself facing major heart surgery—and eventually travelling to the other side of the world in search of an alternative.

The diagnosis

In 2011, at just 21 years old, I was told that my aorta was dilated and rapidly getting larger.

I was told that it had reached approximately 4.9–5.0 cm and that surgery would be required within roughly six to eight weeks.

It was one of the biggest shocks of my life.

At 21, you don’t expect to be sitting in front of surgeons discussing major heart surgery. Suddenly I was thinking about my future, my health and whether my life would ever be the same again.

The proposed treatment involved replacing part of my aorta. However, my valve was still functioning well, and I had doubts about whether the conventional surgery being offered to me was the only—or necessarily the best—option.

My gut feeling was telling me that something wasn’t right.

When something this serious involves your own body and potentially the rest of your life, I believe you owe it to yourself to ask questions, understand exactly what is being proposed and investigate what other options might exist.

So I started researching.

Discovering another option

During my research, I somehow came across the story of Tal Golesworthy and the Exstent procedure.

The more I read, the more interested I became.

What caught my attention was how different the concept appeared compared with the conventional surgery I had been offered. It raised an obvious question in my mind: if there was potentially another way of addressing the problem, why shouldn’t I at least investigate it?

Eventually, I contacted the Royal Brompton Hospital in the United Kingdom. A very helpful member of staff put me in contact with the right people, and suddenly something that had started as internet research began turning into a genuine possibility.

But then I encountered another major obstacle.

The treatment was in the UK and would need to be paid for upfront out of my own pocket. Despite having access to Medicare in Australia and private health insurance, neither would fund the procedure overseas at the time.

That actually created even more questions in my mind.

When I started comparing the conventional operation being offered to me in Australia with the alternative I was investigating in the UK, I struggled to understand why I should automatically choose the conventional option simply because that was the treatment available and funded at home.

For me, this wasn’t about choosing one procedure because it sounded newer or different. It was about understanding why one approach was being recommended over another and what the long-term implications of each could be.

The fact that I would have to personally fund the UK option didn’t make me dismiss it. If anything, it made me want to investigate it even more thoroughly before making one of the biggest decisions of my life.

Speaking with my cardiologist

Once I received an estimate of the treatment costs, I went back to my cardiologist and discussed what I had found.

He couldn’t make a recommendation, but he did indicate that there appeared to be something worth exploring further.

That was important to me.

I wasn’t looking for somebody to make the decision for me. I wanted to know whether what I had discovered was medically worth investigating rather than simply dismissing it because it wasn’t the conventional option being offered locally.

With his assistance, my previous aortic scans and relevant medical information were sent to Professor John Pepper and the team in the UK so they could assess my situation and we could begin the process.

Flying to the UK

At the end of September 2011, I flew to the United Kingdom to undergo further scans and have the implant prepared specifically for me.

When I arrived at the hospital, I had the pleasure of meeting Tal Golesworthy.

What I remember most was how welcoming he was. I was a young Australian who had travelled halfway around the world to face major surgery, yet he greeted me almost like family.

He explained what was going to happen and helped make sure there was no unnecessary confusion or uncertainty.

I met with the surgeon, everything was confirmed, and then came the wait while my implant was manufactured.

Around two weeks later, I was called in for surgery.

16 October 2011

My surgery took place on 16 October 2011.

Naturally, I was nervous. No matter how much research you do, there is always fear when you’re about to undergo major surgery and you don’t know exactly what life is going to look like when you wake up.

But I had an incredible team around me.

I remember being taken into theatre that morning. There were conversations, even a few laughs, and the team made me feel surprisingly comfortable.

Then, before I knew it, I was waking up.

I remember seeing a nurse nearby and asking her:

“Has the surgery been done?”

She smiled and told me that it had.

That moment is something I will never forget.

The surgery I had travelled halfway around the world for—the surgery I had spent weeks worrying about—was over.

Then she told me they needed to remove the drain tubes.

I can safely say that wasn’t my favourite part of the experience, but the relief once they were removed was worth it.

Recovery

I was initially in a high-dependency ward with what seemed like wires, tubes and equipment everywhere.

I remember Professor John Pepper coming to see me and asking how I was feeling. Something as simple as seeing the surgeon standing there checking on me gave me an enormous amount of reassurance.

It made me feel that I wasn’t just another patient.

Over the following minutes, hours and days, I went through different levels of discomfort and pain. But something else was happening at the same time:

I was getting better.

My breathing improved. Walking became easier. Every day I could do a little more than the day before.

The doctors and nurses were very pleased with my recovery and, on 21 October—around five days after undergoing major surgery—I was discharged from hospital.

Considering what my body had just been through, that felt incredible.

The journey home

I remained in the UK for approximately another five weeks so I could recover properly and attend follow-up appointments before being cleared to make the long flight home.

During that time, something happened that I will always remember.

Tal Golesworthy continued checking in on me and making sure I was doing well. A few days before I left the UK, we even had lunch together.

That might sound like a small thing, but to me it represented something much bigger.

This was a person connected to a procedure that had potentially changed the course of my life, yet I never felt like I was simply a number or another case.

Even after I returned to the other side of the world, Tal continued to keep in contact with me by email.

I will always be grateful for that.

A second chance

Looking back, the entire experience feels like a turning point in my life.

At 21 years old, I went from being told that I needed major surgery within weeks to researching alternatives, travelling overseas, undergoing an operation and eventually returning home with a completely different perspective on life.

In many ways, it felt like a rebirth.

I returned to Australia, travelled around the country, went back to full-time work and, most importantly, continued enjoying my life.

I will always be incredibly thankful to Tal Golesworthy for welcoming me to the Royal Brompton Hospital and treating me with such kindness throughout the experience.

I am equally grateful to Professor John Pepper and the entire medical and nursing team who cared for me before, during and after my surgery.

Thank you.

This experience taught me something I will carry for the rest of my life:

When it comes to your health, don’t be afraid to ask questions. Don’t be afraid to seek another opinion. Don’t be afraid to research and understand the options available to you.

And don’t assume that because one treatment is the conventional or funded option, it is automatically the only option worth considering.

Ask why. Understand the differences. Speak with qualified specialists. Do your research and make an informed decision about your own health.

For me, what began as one of the most frightening moments of my life ultimately became one of the most meaningful.

It gave me a second chance, and I intend to make the most of it.

Editor’s note: Since Daniel’s procedure in 2011, ExoVasc® has been approved for use in Australia. If you’d like to know whether it could be an option for you, please speak to your cardiologist or cardiac surgeon.