Yvonne

Congenital heart disease

A journey of resilience – overcoming aortic valve stenosis

Yvonne received a congenital heart murmur diagnosis at age 38 but continued to lead an active life filled with ultramarathon training, teaching, and community involvement for decades. Despite facing challenges with aortic valve stenosis in later years, she maintained her resolve and underwent a life-changing heart valve replacement surgery at 70.

At age 38, I was diagnosed with a congenital heart murmur. I was advised to have an echocardiogram, which revealed I had mild stenosis of my bicuspid aortic valve. The aortic valve normally has three cusps (flaps that open and close to let blood through the different chambers of the heart). A bicuspid aortic valve only has two cusps, a congenital condition from birth. Because I was embarking on ultramarathon training, often running in mountainous and isolated areas, I made an appointment with a cardiologist at Southern Cross Hospital in Christchurch to discuss whether it was safe for me to continue my training and racing. His words were – “Go for it but keep up your three yearly echocardiograms to monitor the condition of the aortic valve.”

Embracing life with a congenital heart

I was very happy with that advice and enjoyed 20 years of competitive running, tramping, and cycling, along with a busy family life and a demanding job in charge of a large Special Needs department at Ashburton College. 
 
At 58 my husband and I moved to Nelson, where I continued Special Needs teaching at Nelson College for Girls. My GP enrolled me in the heart valve clinic at Nelson Hospital where I continued my three yearly echocardiograms. I very much valued these, along with the informative follow up reports on my heart health and the condition of my aortic valve. At this time, I was still running seriously, commuting on my bicycle approximately 150kms each week and keeping up a busy life supporting community sporting activities.

Navigating the impact of valve deterioration

Another 10 years later, I started to find my running wasn’t coming as easily as it once did; it became ‘more laboured’ and I couldn’t keep up the pace I was accustomed to. I also found uphill running, which had been my strength for years, becoming harder and more tiring. Initially my GP and running friends put this down to my age and part of the normal ‘aging process.’ However, I wasn’t happy to accept that, and asked for an earlier than normal echocardiogram at the valve clinic; a year before I was due. This showed, as I had suspected, my valve had deteriorated and was now in the ‘moderate stenosis’ range, with yearly monitoring to follow. 
 
I continued jogging, walking, and cycling, but tired easily and had to reduce the intensity and duration of my exercise. I was able to maintain this new regime for about two more years. At the same time I still enjoying ‘relief teaching’ at Garin College and continued my active support of local sporting groups. 
 
After 2 years of living in the moderate stenosis range, my activity levels decreased further and I was reduced to walking and easy biking; running became too difficult causing breathlessness and fatigue. I was very pleased to still be able to live a relatively normal work and family life, I believe this is due to the high level of fitness I had developed over the years. 

Facing surgery for heart valve replacement at 70

In March 2023, at 70, I was fortunate to get another echocardiogram, revealing severe stenosis of the aortic valve, which is what I had suspected. Further testing with an ECG and an angiogram showed that aside from my aortic valve, my heart was overall in excellent condition. I was put on a waiting list for a heart valve replacement as soon as possible, to prevent damage occurring to other parts of my heart. 
 
I was apprehensive about having such a major surgery, but with the rate of decline with my valve, I was told I would be unlikely to even walk by the end of the year if I didn’t have the bicuspid aortic valve replaced. Therefore, it was not a matter of ‘if’ but ‘when.’ The cardiology nurses at Nelson Hospital were very helpful and supported me through my concerns and uncertainty. 
 
I was scheduled for open heart surgery and a valve replacement at Wellington’s Wakefield Hospital in July 2023, but I contracted COVID-19 and the surgery had to be rescheduled for August. I was extremely grateful to the staff at Wakefield Hospital for their expertise, their advice and the thoroughness of care provided throughout my week-long stay. I flew back home to Nelson with my new tissue (pig) valve, feeling extremely privileged to have had this operation so quickly and efficiently. 

Road to recovery

During the first three months of my recovery, I followed the ‘care plan’ given to me by the hospital, doing all the exercises, and probably a little more, than they advised. My three-month post-surgery checkup with the Cardiology Nurse Specialist at Nelson Hospital was informative and encouraging. Following that, I had an echocardiogram and 4 weeks later, a consultation with the cardiologist. He indicated my recovery was going well and that I could start ‘exercising in earnest.’ 
 
Now it is 4 months after open heart surgery. I have found it hard going, but I am gradually increasing my exercise regime, I have already made significant improvements in my overall fitness and feel very positive about life with my new valve. I have plenty of energy now for my family life and my support role in local sporting activities. 
 
I am very grateful to the staff at Nelson Hospital and Wakefield Hospital in Wellington, for giving me another chance at life and I intend to embrace this to live life to the fullest in the future. 
 
In closing, I encourage others with heart disease to talk through your issues with professionals, to trust the cardiologists to offer you the best treatment; and to be brave enough to follow through with it. While recovering from surgery or another medical intervention, be positive and realise you can live a full and vital life again.