Jonathan Toms: My COVID-19 Valve Disease Story

Published On: 12 February 2021Categories: Aortic Valve, Open Heart Surgery, Patient Stories

In 2020, during the first national lockdown, Jonathan Toms, 44, began to feel out of breath while out walking with his friend. Just a few months later, Jonathan was struggling to tie his shoe laces and, after a trip to A&E, was diagnosed with aortic stenosis. Thanks to the Mr Bahrami, the team at Royal Brompton and his wife, Julie, and two sons, Charlie and Alfie, Jonathan received his life saving valve disease treatment and is now on the road to recovery.

This is his story:

“My story started last year during the first lockdown when I noticed I was getting a bit breathless when I was going for a walk. I’d been meeting a friend and going for some longer walks up hills, and I just found myself getting more and more breathless. At first, I figured I was getting older, and a bit more unfit, and once I grabbed my breath a bit, I was fine.

Then in August, I went out for a meal with my family after taking my son to swimming training, and I just felt like I had this intense indigestion. It wasn’t painful, but it was really uncomfortable, and then I started to feel breathless again. And I remember that being like a trigger point.

Soon after, just doing my laces, getting a shower, simple things like that and I was getting more breathless.

My wife was saying ‘you need to call someone’. So I called 111, and they thought it might be COVID related, and then after speaking to my GP he said that I may have had COVID and been left with a clot and that I need to go to A&E and get myself checked out.

So I went down to Stoke Mandeville, and I was sat there all day on my own. It was all a bit weird and unexpected, and being on my own didn’t help things. Then they started saying that I might have had a heart attack, and I was thinking ‘When?’.

They said the Cardiology department in Wycombe would take me and give me an angiogram, and if it was a heart attack, I would get a stent.

Then the doctor said he was concerned with the enzyme levels in my results, so angiogram first and then echo. I ended up having the echo first, and when he put me on my side, and I actually couldn’t breathe properly. It was all so weird. To be honest, I didn’t even know what an echo was.

Then they realised I had a bicuspid valve, which then resulted in severe aortic stenosis. The angiogram was clear. It was the valve that was the problem. So I was referred to Mr Bahrami, who they said was the specialist.

They did all sorts of tests over a very short period. I was told to monitor my symptoms closely and report any changes immediately.

So I did that, but then around December, it started to get worse. And I noted it on my symptom tracker and reported it to my clinician.

Before Christmas, I got called to get an MRI so I could be booked in for surgery. Then I got the call between Christmas and New Year saying there was a space on January 5th. It all seemed to happen so quickly, but I knew needed this operation.

I went to Harefield for pre-op assessment or fit for surgery clinic, and got a call to say I was next on the list, I was actually being made redundant, then I got a call the same day saying they had space for me. It was such a strange time in my life.

I went down on January 3rd, had a COVID test before admission, then went in on Tuesday and was operated on. I was so lucky. When Mr Bahrami was sorting stuff, he said if I had come a week later, it might not have happened, because the infection rate and admission were rising quickly.

Everyone asks if I was worried about COVID and the answer is not at all. It’s not something they talked about. As long as I was COVID free, I could go ahead. I had three tests all in all – one before New Year when I got my slot, then drove down again on Sunday to be admitted, then another when I was in there.

They didn’t make anything of it; they were so professional. Of course, there was PPE and facemasks, but at no point was I worried about the quality of care I was receiving or my safety.

The only thing that was really hard was my wife couldn’t see me, and I’m not gonna lie, I was scared before the operation and that fear of the unknown. You almost have to say goodbye over FaceTime, but I’m thankful I had that, and I know I just needed to be treated – and I was so lucky to have the chance.

And the team in Royal Brompton were absolutely fantastic, I couldn’t praise them enough. When I woke, I felt like I had been hit by a truck, but all I can remember was I had someone with their arm around me, supporting me. I just felt incredibly supported, which is exactly what I needed.

Just over four weeks since my operation, and I feel fine. I go out for walks every day, and I’m trying to make those walks a bit longer. It’s hard with COVID, but I’m trying to get 30 minutes of exercise a day. Now I’m walking a bit further, and it does tire me out and can be painful sometimes. I know that will take a while to heal, but I’ve got great support from my family.

And I feel a whole lot better than I did.

It’s been quite a journey to here, and an unexpected one. I have always been so active, always swimming and playing sports, and then crikey, look at what has happened. You start thinking ‘oh that’s not quite right, I feel a bit weird.’ But not for one minute did I think that I had a heart condition and four or five months later I’d be having major heart surgery.

Funny enough a few years ago, I started trying to run, and I noticed that I could run half a mile and then I was struggling to grab my breath. I just thought I was unfit, but looking back, maybe that was the trigger. That’s why awareness is so important, and people need to talk about the triggers of breathlessness more, If I had known what heart valve disease was and what the symptoms were, maybe my story would have been different.”

Heart Valve Voice CEO, Wil Woan, said “Thank you, Jonathan, for sharing your remarkable story. While heart valve disease is more prevalent in people over 65, it impacts younger people, which is why symptom awareness in the entire population is so important. Jonathan also highlights the importance of closely monitoring your symptoms so you can track changes and report them immediately. Well done to Mr Bahrami and the team at Royal Brompton for their incredible work. Despite the pressures of COVID, they were able to treat Jonathan timely and safely, and make him feel comfortable even in the face of extraordinary pressure.”

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