Stacey’s Heart Valve Disease Story

Published On: 16 March 2023Categories: Endocarditis, Mechanical Valve, Patient Stories

In 2019, at just 33 years old, Stacey Langridge was experiencing severe shortness of breath and swollen ankles. When referred to Weston General Hospital, it was found that she had aortic stenosis, mitral valve disease and endocarditis and needed emergency treatment. Over the next four weeks in hospital she had her valves repaired and replaced and antibiotics to treat her endocarditis. Now, she is making a good recovery, adjusting to life after treatment, and looking forward to the future with her family. This is her story.

“My story started in 2019 when I was sent to a heart doctor after experiencing a lot of shortness of breath and swelling of my ankles. Also, my appetite had reduced significantly; I was down to one meal a day and lost a lot of weight.

After weeks, if not longer, of these symptoms, I was referred to Weston General Hospital for an ECG. They confirmed that I had a leaky valve and said I couldn’t go home. I was there for the weekend, and the doctors came around on Monday. They realised I had been put on penicillin which I had had an allergic reaction to!! I had no idea of this allergy until then! They took some blood cultures, and later that afternoon, I was blue-lighted to the Bristol Heart Institute. There, I had an endoscopy and was diagnosed with endocarditis!

It was such a scary time, and I was in complete shock. Before this, I had never of heart valves, let alone heart valve disease!! I couldn’t stop anticipating what would happen next. I genuinely had a fear of death and started making a bucket list. It was also so hard being away from my family for so long! The staff were amazing, but I felt so alone at times.

They decided to replace my valve, and then I would go on a dose of antibiotics to treat the endocarditis. I decided on the mechanical valve because they last longer, and I have had children I did not intend to have more. I was in no hurry to repeat the surgery process and was confident I could self-monitor my INR at home.

Waiting for surgery was such a scary time. Unfortunately, there’s no turning back, and despite it being unlikely, death is a possibility, and the thought of not seeing my family and friends again made me really sad.

I’m glad to say that the surgery went well. During my time in ICU, I was encouraged by a physio to walk numerous times a day. I was determined to get better, and I did what he said while attached to tubes from the side of my neck!! I was then filled with a pic line to my heart, which was not a pleasant experience but was necessary for the endocarditis treatment. Once I was better, I got moved to the recovery ward to continue my treatment.

Throughout it all, and despite the challenge, I knew I was in the best place. The staff were amazing, and I met a few other valve patients along the way.

After four weeks, I was discharged, and although my physical recovery was going smoothly – I could breathe again and walk further and further – my mental recovery took a bit longer and still affects me now, to be honest. As grateful as I was for my life, I struggled with PTSD. I just wanted to move on with my life; little did I know that it wasn’t as simple as that.

I threw myself into cardiac rehab sessions at my local gym. They were very helpful in getting my fitness levels back up.

It was after one of the sessions I went to the cinema with my Mum and my Auntie to watch ‘Last Christmas’, and it was about a girl who had had a heart transplant – which I wasn’t aware of beforehand. There was a scene where she revealed the scar from her heart surgery, just like mine. I couldn’t hold in my emotions; I was super triggered and ran out of the cinema, having an emotional breakdown.

When I told the rehab staff what had happened and that I didn’t know how to deal with my triggers, they didn’t seem to know what to suggest as strategies. Although maybe I was just having to face what I was trying to avoid, and they were both very supportive and informative, I think more could be done to support mental health after a trauma like this.

Since my operation, my life is now a lot calmer. I focus on what I can do instead of what I can’t do. I have some anxiety about warfarin and trying new things, but I feel that doing things out of my comfort zone helps me to be more confident rather than worried about the outcome. So far, I have enjoyed swimming under the strawberry moon, going to Watchet festival, a Slipknot gig and seeing Phantom of the Opera in London, which was on my bucket list, but I hope to tick off more.

I look forward to making more memories, watching my son grow up and exploring the world. I dream of travelling in a camper with my husband and going on a summer-long festival tour.

The staff at both Weston general and BHI were terrific. They all work so hard. When you are in a hospital for a long time, you begin to see the community of it, these people are absolute angels, and I am grateful to them every single day. I wouldn’t be here without them.

To those who helped me on my journey, I am humbled by their love. I am so lucky to have a supportive network in my life, and I can’t thank them enough for what they did for my family and me. I need to give a massive shout-out to my son Tommy. He had only turned eight at the time and coped so well at such a scary time. Thanks for holding it all together Squidface.”

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