“For the first time in many years I can look forward to my quality of life improving. I’m incredibly grateful for the work of The Baird Institute, and its supporters – this surgery has truly been life changing for me”
Before Surgery
The underlying reason for my heart issues is that I live with Marfan Syndrome, a connective tissue disorder that typically leads to a dilated aorta. I have known for a long time that I would likely one day require surgery to prevent an aortic dissection, which can be fatal. For most of my life, I have undergone yearly testing to measure my aorta so we can fix it before it became a problem.
Unrelated to Marfan Syndrome, I also have a restrictive lung condition that significantly impacts my lung capacity.
In mid-2023 at the age of 32, I was advised by my cardiologist, Prof. Richmond Jeremy, that I was starting to reach the threshold where surgery on my aorta needed to be considered. Due to my lung capacity at the time, Prof. Paul Bannon and colleagues considered it too risky to undergo surgery. With the support of Prof. Bannon, Prof. Jeremy and respiratory specialist, Prof. David Barnes, I tried new medications and an exercise regime to improve my lung capacity.
By April 2024, my lung capacity had improved enough that Prof Bannon agreed to perform an aortic repair. As part of this process, we discussed options to repair or replace my aorta, the pros and cons of each approach, and how my lifestyle would be impacted. I was empowered to be an active decision-maker and chose an artificial replacement for the benefits it would give in my circumstance.
With Prof. Bannon’s support, I chose a surgery date three months in the future that suited my work schedule and would allow me to take 12 weeks off for post-op recovery. Through my GP, I also enrolled in a ‘prehab’ program at my local hospital (like rehab, but you do it before surgery).
Prehab was the best way to prepare for surgery and I cannot recommend it enough. It involved a lot of low-impact cardio and strength-building exercises in a safe environment. Everything that I did was to set me up for success in post-op recovery. I definitely got sick of all the squats, but building my leg strength was essential because I’d been told I wouldn’t be able to use my arms after surgery while my sternum recovered – most people unconsciously use their arms to help with standing up from chairs, getting out of bed etc.
After Surgery
The reality is the first couple of days after surgery are hard. While in the ICU I was hooked up to several machines, feeling brain foggy with pain meds, and the body hurt. But it got better, and I was surprised by how quickly I wanted to get my body moving again. All the prehab was helpful because my legs were strong, and I was quick to feel comfortable getting in and out of chairs and bed and going to the bathroom on my own.
I found having a 1kg weight limit for my arms frustrating at times – this weight limit is for the first 6 weeks because you’re essentially healing a broken bone without the support of a cast (surgeons cut through the sternum to operate on the heart so the sternum needs to heal like any broken bone would).
I struggled with sleep for the first couple of weeks and generally felt out of sorts – there were some emotional ups and downs and a lot of hugging my mum while in hospital.
After Hospital
Once home from hospital, I started a cardiac/pulmonary rehabilitation program through a local hospital to work on my heart and respiratory health. On non-rehab days I also undertook a walking program to slowly build my stamina.
At the time of writing, I’m 10 weeks post-op and my energy and stamina are improving day by day.
The efforts of Professors Bannon, Jeremy and Barnes, and the support offered through the hospital, rehab, and my parents has helped to keep me motivated. Being consistent and dedicated to my recovery efforts means that I am already functioning better than I was pre-surgery. Knowing that I no longer need to worry about my aorta dissecting also relieves a huge mental burden I’ve been carrying for years!
The long-term work of The Baird Institute means knowledge of the most effective surgical procedures and recovery protocols for situations like mine has been refined and improved over decades. This gave me great confidence in Prof. Bannon as my surgeon, and the techniques that would be used to replace my aorta. Due to the success of the surgery, for the first time in many years I can look forward to my quality of life improving. I’m incredibly grateful for the work of The Baird Institute, and its supporters – this surgery has truly been life changing for me, and I will continue reaping the benefits for the rest of my (hopefully very long!) life.
