Joanne Woodhead’s Aortic Stenosis Story

Published On: 1 May 2024Categories: Aortic Valve, Open Heart Surgery, Patient Stories

In 2021, Joanne Woodhead began experiencing lightheadedness during exercise. After consulting her GP, she was referred for an echo and found to have severe aortic stenosis, bringing Joanne face-to-face with her fear of hospitals. With the support of her family, friends, heart team, and a clinical psychologist, Joanne was able to conquer her fear and undergo life-saving treatment.

This is Joanne’s story.

“My symptoms first started to show themselves when I was exercising. I’d been running regularly for a few years before the heart diagnosis. I decided to do the Fit for 50, and after doing boot camps I was always trying to push myself to get fitter, but I could never seem to achieve it. Then, on one run, I went really lightheaded and fainted in a lane. I went to the doctor, who said he thought I was fine and it was just a one-off.

But really, I was feeling tired all the time, I just had no energy. Once on a walk with my friends, I couldn’t walk up a hill without getting lightheaded. They thought I was joking. One time, I didn’t think I’d be able to get home. I was almost crawling home. It was so upsetting; I was in pieces.

I’d always had challenges with doctors. I never wanted to go. A lot of it goes back to when my mum and dad died. Hospitals have always been a place I’ve avoided.

After another traumatic trip to the GP, they referred me to the hospital for an ECG. I absolutely did not want to go. I didn’t think I could do it.

I had to bring my sister with me to calm me down. After the ECG came back ok, they thought it might be related to COVID, but I knew something was wrong. Eventually, I was sent for an echo and a stress test, and they found the murmur.

The cardiologist said I had severe aortic stenosis with a bicuspid valve and I needed open-heart surgery.

I just went to pieces.

Looking back, I had normalised everything. Kept trying to get fitter to mask my increasing fatigue. I’d joined a running club to get fitter. Doing anything I could to avoid the fact that there could be something wrong.

After the diagnosis, I came out of the hospital shaking and crying. I couldn’t remember anything they’d said; all I could think about was that I couldn’t go through with the surgery.

That night, I came home and couldn’t eat or sleep. I had a massive panic attack, and I called 111. I thought it was my heart.

Then I contacted my GP and said I needed some help, and she had the idea for me to see a clinical psychologist. Even then, I thought no. I can’t do it. It wasn’t even the thought of the surgery; it was the hospital that I couldn’t face.

Over the next couple of weeks, I had a CT angiogram, and I went to pieces in the waiting room, by the time I got in for my scan, I was in floods of tears.

Both my parents had died in that hospital. And my dad had died of heart valve disease.

After a couple of weeks, the clinical psychologist sessions started, and she started to try and build me up and prepare me for treatment. We spoke on the phone and on Zoom, and the next step was to meet her and start graded exposure for the hospital.

We started by sitting on a wall outside and looking at the hospital. Then going for a coffee with my friends in the hospital coffee shop. Even in the coffee shop, I could be fine, but then seeing doctors and nurses would trigger absolute panic.

But bit by bit, we got further and further. At one Zoom meeting, she introduced me to Kerry Pena, who would be my heart nurse. The first time I met Kerry, I couldn’t even look at her. We started meeting in the cafe, then by the lift, then in the lab. We were building familiarity. Knowing my way in, where I was going, who would be there, and and what I would be doing were all important parts of helping me relax. They arranged an appointment for me to go to the ICU, the ward, meet the Sisters on the wards, and see the room I’d be in. During this process, at times, it would be overwhelming, but gradually it got easier.

Five months after my original diagnosis, I was starting to feel comfortable and even went for a blood test on my own.

As my surgery approached, my clinical psychologist put together a care plan for me so all the staff in the different areas of the hospital knew how to help me. Most of it was followed to the letter, and it gave me control and comfort that was much needed.

Kerry came with me to see my surgeon, along with my sister. Kerry listened to everything and helped go through it with me after because I was in fight and flight mode during the appointments. Kerry being at those appointments really really helped. I couldn’t have done it without her.

I had my last meeting with my psychologist the day before my surgery. Even at that point, there were hiccups, but it was a testament to how far I had come that I was able to handle them.

My treatment itself wasn’t smooth, and the three weeks I was in the hospital were traumatic, but I did it. When I was diagnosed, I thought I was going to die, but I survived. Now I wear my scar like a badge of honour. I don’t want it to fade.

It goes without saying I couldn’t have done this without that mental health support. My clinical psychologist was a massive part of my heart team. Together with Kerry, she gave me the mental strength to get through it, and I owe them so much.

I continued to see her for six months after my operation to help me deal with the surgery itself and the aftermath of it.

Now I am back to living my normal life, symptom-free. I’m exercising again, joined a gym, and I’m enjoying my walks and my holidays. I can’t thank the entire team enough for giving me a new lease of life!

Cardiovascular Clinical Nurse Specialist, Kerry Pena, ”Joanne’s heart valve disease journey was not only marked by medical interventions but also by the invaluable assistance of a clinical psychologist. Joanne worked incredibly hard to get to the point where she felt comfortable coming in for her treatment, and I’m immensely proud of her for overcoming her fears. This collaboration exemplifies the holistic care we strive for in the NHS. Heart Valve Voice’s work to integrate mental health provisions within clinical guidelines has been instrumental in ensuring that patients receive comprehensive support tailored to their needs.”

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