‘It’s been real mental torture’: one woman’s wait for vital surgery

Isabella O’Brien is one of the 5.1 million people in England waiting anxiously for treatment that the NHS cannot provide anywhere near as quickly as they want.

She has been waiting for almost four months for open heart surgery to repair a vital organ severely damaged by Ehlers-Danlos syndrome, a serious genetic disorder affecting connective tissue.

“Ehlers-Danlos syndrome means all of my muscles and tissues are weaker. Everything is a lot weaker than the average person. That affects my whole body, especially my heart,” explains the 25-year-old, who lives in Staines in Middlesex.

She is waiting to have two heart operations in one. In the first, surgeons will replace three parts of her aortic valve, which regulates the supply of blood from the heart to the rest of the body. In the second they will put a ring around the mitral valve, to strengthen a key part of her heart’s plumbing that Ehlers-Danlos syndrome has left “very floppy. It’s too weak to push the blood properly so it just regurgitates.”

“I went on the waiting-list in mid-February. This is now June, so it’s been almost four months already, and I don’t yet have a date for my surgery,” says O’Brien, who also has heart failure.

The surgery is urgent – it could save her life. Until it happens there is a danger that her aorta could burst; if it did she would be at high risk of dying from massive blood loss. “My aorta is dilating, so it could rupture very soon. A cardiologist has warned me that if that does happen I’ll be in agonising pain, be scarcely able to breathe and my life would be at risk,” says O’Brien, a mother of one.

“My surgery should be a priority for the NHS. I know that there are other people on the waiting list who need treatment more. But at the same time, my surgery is pretty urgent. It can wait but not for too long as that would be risky, as the aorta could tear.”

Dr Sonya Babu-Narayan, the associate medical director at the British Heart Foundation and a consultant cardiologist, said: “Despite the NHS being pushed to exhaustion and doing all it can, the pandemic continues to cause significant and mounting disruption to ‘routine’ treatment and care for people with heart problems – even when it comes to potentially life saving heart surgery.

“Heart procedures and operations are not luxuries. People are understandably anxious when they know they need vital heart care but don’t know how long they will have to wait. The longer people wait, the more likely it is that they could become more unwell as their heart condition worsens, or even die.”

Long delays in heart patients accessing treatment “have likely contributed” to the fact that there have been thousands more deaths than usual during the pandemic of people with heart disease and stroke, she added.

Like so many of those forced to wait O’Brien’s mental health is suffering. “It’s been real mental torture, to be honest, as I’m petrified by the surgery, because the risks involved are high. They were making me anxious. But it’s also mentally exhausting to be waiting, waiting, waiting for my treatment and not knowing when it will happen – that’s a form of mental torture.”

She began a degree course in nutrition at university last autumn but gave it up after four months as she wants to have the surgery, and negotiate the long recovery involved, and then start afresh.

“I’ve put my life on hold until I’ve had the operation. I’m desperate to live my life now but I can’t at the moment. I want to have it soon so I can be fully recovered by the end of the year,” she adds.

“But to do that I need to have my surgery as soon as possible. And I’ve no idea when it’ll happen,” she adds.


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