Wednesday 12th May 2021
In April 2020, Nurse Sandra McGonigle was diagnosed with aortic stenosis with a bicuspid valve. After her health deteriorated, she was rushed through for surgery in February 2021, where she had open-heart surgery to replace her valve.
This is her valve disease story:
"I found out I had heart valve disease last April. I had some chest pain in December 2019, and I think at the time I put it down to the stress of Christmas and work - and having bitten off a bit more than I could chew. I went to the doctor, who heard a murmur and referred me for an Echo in January 2020. I was told I had a bicuspid valve with upper-end moderate aortic stenosis. I was told they would review again in six months because I was asymptomatic.
Or at least I told them I was.
On reflection, I wasn’t asymptomatic at all. I just didn't recognise the symptoms. I was masking them, thinking they were other things. I have other health conditions, and I just put my symptoms down to them and didn't recognise that I was a lot more symptomatic than I thought.
After I explained I didn't have any symptoms, they put me on the list for surgical referral, but then Covid happened and that was put back. I had a phone consultation with the surgeon, who explained the types of valve and said we would watch and wait.
But then it all came to a head in February this year when I had a dizzy spell at work. I had experienced these before, but they had passed pretty quickly. But this spell at work really frightened me, so I rang my GP who sent me to A&E. They realised my valve was failing, and I needed to be treated now.
My experience with the staff in the hospital was great. Everyone was so lovely and did everything to support me through a challenging time. I was effectively in isolation because of Covid, and that was hard emotionally and made decision making even more challenging.
The support I got about what type of valve I could have wasn't great. It was very much just the mechanical valve, which I didn't want based on my lifestyle and work. But they were just saying this was the only way to go.
I ended up going on Facebook and found a support group, where I put up a post in desperation. And that's when I found out about the tissue valve. I didn't really know any other type of valve, and I just needed to have a conversation with someone about it. I really did appreciate the support I got there. I know you need to take this information with a pinch of salt online, but I needed to speak to people who had been through this. Along with the group and the Heart Valve Voice website and YouTube channel, I made a more informed decision - despite some resistance from my cardiologist.
After I made my decision, I was transferred from Derry to Belfast, and the surgeon explained the risks of the operation and the valve. Still, if this was what I wanted, he was happy to proceed.
It was such a tough time and a really difficult decision to make on your own. You wake up after the operation thinking, "I hope this is the right thing to do. I made this decision by myself, is it the right one?"
I just don't know what I would have done without that information and support online. What really swayed it for me was the Heart Valve Voice video online and listening to the doctor who was speaking in his car (watch that video here); and I was just so impressed by him, and it made me feel a lot better about the decision I was making. I watched all the videos from Heart Valve Voice's Patient Day 2020, and I was so impressed by them.
Now, 8 weeks on, and I feel great. I've started driving, taking the kids to school, walking the dog, doing my cardiac rehab class and increasing how long I can do every week. I'm getting back to feeling myself again. I've been off sick before with Lymes disease, and I was really sick then. So this is much easier than what I've been through before. Every day there is an improvement, and every week there is an improvement. So I just feel great about that.
When I was told I was having open-heart surgery, I worried about what the scar would look like. And much as I feel vain for saying it, secretly, it was worrying me. But 8 weeks on, and my scar is really good. It's healing very nicely, and others assure me it is hardly noticeable. I presume it will just get better and better.
Since the operation, we've now discovered that my son has heart valve disease, and I must admit I do worry about that. But with the changes in science, the brilliant clinicians in the NHS and the work Heart Valve Voice are doing, I can see that they are planning for the future; and when it comes for him to be treated things will be very different.”
Heart Valve Voice CEO, Wil Woan, said “Thank you, Sandra, for sharing your story. Sandra’s story shows something I have seen often, where patients mask symptoms or excuse them away as signs of age or other conditions. She also highlights the power of community, information and patient choice. Online groups offer support, comfort, and information. I’m proud that, along with the groups, Heart Valve Voice provided her with information to help her come to a more informed decision. And, like Sandra, I love that video of Benoy in the back of a car giving his presentation after getting stuck in traffic in Southampton!”