Jacqueline Lewis’ Heart Valve Disease Story

In 2022, retired healthcare professional Jacqueline Lewis began to feel breathless and pain in her chest. After having her symptoms dismissed as mental health issues, Jacquline was eventually diagnosed with severe aortic stenosis and needed urgent treatment. This is her valve disease story: 

“I think I first started to notice something was up when my mum was in hospital around Christmas 2022. I remember getting out of breath when walking up and down the hospital corridors, and I just felt a bit different. I thought it was the stress of everything that was going on. I’ve always been asthmatic, and I thought I just needed my inhaler, and then it’ll be fine.

It was only eight months later when I was reflecting back on that time, and I could see I was changing my behaviour. I used to always walk the same route to the office, and soon, I had to stop at the top of the bridge to catch my breath. Then, I started working from home instead, and I convinced myself it was my choice, that it was better for me. 

I went to the GP, as the breathlessness was getting worse and worse, and I could tell something was wrong. I was grieving, and you put a lot down to grief. But it was more than that; at times, it felt like my heart was jumping out of my skin. 

The GP thought it might be stress and anxiety and that my mental health was suffering. I had to take time off work because I couldn’t get there due to my symptoms, and I felt like my colleagues thought it was a mental health issue too. I thought I was going bonkers! It was so frustrating feeling like I was being dismissed. 

Eventually, they sent me to the Cardiology department, but they thought I had angina. And they just couldn’t get past that. Then, there was an issue with some of my results getting lost, and I was waiting around for different tests. They diagnosed me with left ventricular hypertrophy and discharged me.

I ended up paying for a private consultation because I just knew something was wrong, and I was getting really anxious about the symptoms. 

I went to see the Cardiologist, and when I saw him, he listened to my heart and thought I had aortic stenosis. No one had ever listened to my heart. I was so impressed by him. He knew exactly what that stethoscope was telling him.

He said I needed an echo because he could hear a murmur on my aortic valve. After the echo, I went back to see him, and he said I was going to need open heart surgery. 

They found out I was born with a bicuspid valve. All the things in my life that I could then relate to this. I remember at school I always hated swimming because I could feel this pressure on my chest. I remember doing anything I could to get out of swimming classes!

Looking back, when I was about 11, I had been told I had a heart murmur, but it was never explained to me, and nobody ever said anything about it ever again. 

I had severe aortic stenosis and needed open-heart surgery urgently. Sadly, my operation was cancelled twice. One time, I turned up at  7 am and after waiting around a couple of hours, the doctor came in and said there had been an emergency and I had to go home. I was so shocked, angry and upset. I’d mentally prepared, done all my work up and it was so deflating. Then I just had to go home. 

Then I was due again on Monday, two weeks later. They called up the day before and said it wasn’t going to happen. 

By the time I actually had to go in, I was really relaxed because I’d convinced myself it wasn’t going to happen. I was in the hospital for five days. I went in in the morning; they did all my observations. I sat and chatted with my partner Simon for a couple of hours, and then they came and got me, and it was straight into the anaesthetic room. After my surgery, there was an issue with some bleeding, which gave my son quite a fright, but they got on top of that, and after a couple of days in ITU and some pretty wild dreams, I was back on the ward and getting ready to go home. 

I had to have a blood transfusion because I lost so much blood, and I remember waking up and thinking not only did I have a bit of a cow in me (my new valve) but also someone else’s blood too! It was an incredible feeling. 

The staff at John Radcliffe Hospital were amazing every step of the way. I cannot praise them enough. I felt confident and safe in their care. 

Now, six weeks on and I’m recovering well. I’m doing all my exercises, following all the directions in the book they gave me when I was discharged and I can see real progress. Some days, I feel a bit pathetic because I feel like I should be able to do everything, but I try to stay calm and positive. 

I have to say I think my body is still traumatised. Before the operation, I was a well person, despite my symptoms. But now, I am a recovering patient, which is different. Open-heart surgery is a huge ordeal to put your body through, and you do feel it during the recovery, but I know in time, my body and mind will heal, and I’ll be better than ever.

Now, I’m looking forward to being able to take the dog out for walks on my own and eventually getting back to practising yoga. This experience is life-changing in so many ways, and I feel so grateful that I have a healthier future ahead of me.”

Heart Valve Voice Executive Director Wil Woan said, “It’s a shame to see Jacqueline struggle so hard to get that life-saving diagnosis. Too often, we hear from women whose symptoms are misdiagnosed as mental health issues. More must be done to address the gender inequity in our health system. It’s also too common for patients to pay for life-saving diagnoses, and while some can afford it, many cannot. Thank you, Jacqueline, for being so open and honest about your experience. Your courage will help improve the pathway for women in the future.”