Woman, 26, with very rare heart condition told to ‘live every day like it’s her last’

A young North Lincolnshire woman who was diagnosed with an incredibly rare heart condition at just 26 plans to work her way through her bucket list and live the rest of her life to the fullest after being told by doctors that she can no longer be operated on and to “live every day like it’s her last”.

Megan Hetherington’s story – which she says has “progressively got worse and worse” – began late in 2020, when she suffered three strokes and a heart attack in the space of just two months. In October that year, after suffering with headaches, the 26-year-old underwent an MRI scan which revealed she had suffered a stroke without knowing.

The NHS support worker was diagnosed with a life-threatening blood-clotting condition, called antiphospholipid syndrome (APS). A day after her diagnosis, Megan suffered another stroke, before a third in November that year.


In December 2020, she had a heart attack, and was rushed to Scunthorpe General Hospital. An ultrasound scan showed a huge mass measuring four by four inches.

Four weeks later, Megan underwent open heart surgery in Cambridge to remove the growth. Subsequent tests revealed that the mass was in fact a 15-year-old calcified blood clot that had grown over time.

Megan on her wedding day in September

Speaking to Scunthorpe Live, Megan, who lives in the Isle of Axholme, said: “The mass was so old and calcified so it took three weeks to test, and it came back as a calcified blood clot which had been there for 15 years. I was misdiagnosed with asthma when I was eight, but I’ve not taken my asthma inhaler since I had that operation, so I think the symptoms I was having before weren’t asthma and were caused by this blood clot.

“During the operation, doctors saw there was a hole in my heart which would’ve caused the strokes. They noticed the mass was also pressing on my heart valve and that I had a leaking valve, as well as a mass on my pulmonary artery, so they had to get that out as well. It was a four-in-one surgery.”

Nine months later, Megan had to have a second round of open heart surgery because a repair to her heart valve had failed. Then, in April this year, she was diagnosed with the very rare condition tricuspid stenosis, which occurs when the tricuspid valve to the heart narrows.

Megan was told by doctors that they would not operate on her valve because of how rare the condition is, and the risk of her dying on the operating table is “far too high”. “This is a life-limiting condition and no one knows how long I have left. There simply isn’t enough research because of how rare the condition is,” she said.

“I need an operation to rectify the stenosis. Ideally I needed a heart and lung transplant, but they can’t do that because of my blood-clotting condition.

“They can also put a mechanical valve in my heart, but that could mean I’d be at high risk of clotting, so that’s a no go. Or they could put a tissue valve in which is a pig’s valve, but that would only last two years tops and I probably wouldn’t make it through the surgery in the first place.”

Megan and her husband on their wedding day

Megan added: “It will kill me, it’s just when. My condition is so rare, especially in my case, because it’s normally caused when you get strep throat, if that goes on too long it can cause my condition, but there isn’t another case like mine.

“Other valves within the heart can also experience stenosis (narrowing) and if left untreated the average survival rate is less than two years. I’ve been told to enjoy every day like it’s my last by my consultants.”

Earlier this week, Megan travelled down to London to seek a second opinion, but was told for a second time that it would be deemed too risky to operate on her heart. She said: “Unfortunately the other hospital agreed that I am inoperable for many reasons, mainly being my antiphospholipid syndrome massively increasing the risk of me not making it through another surgery.

“Without this surgery I will die as a result of the severe tricuspid stenosis I have. I have to live my life to the fullest and enjoy every day.

“I’m still processing it because it’s early days, but I think I’ll just accept it and get on with whatever life I do have left. I feel more for my family because I lost a sibling, so I feel guilty, even though I know it’s not my fault.

“I feel like I’ve got to be strong for my mum and my husband, so I’m trying to hold down the fort for everyone, I feel like if I break down everyone’s going to break down around me.”

Megan has created a bucket list for the time she has left and has launched a fundraiser to help her achieve her goals. She has already ticked off number one on the list – getting married. “We managed to do that in September,” she said.

Other things on Megan’s list include doing the Tapir Experience at Yorkshire Wildlife Park, going to Winter Wonderland in London, going to a drive-in cinema, and going to the National Science Museum to relive a childhood memory.

“There’s no knowing of when it’s going to happen, the uncertainty is the hardest bit, there’s no knowing if I’m just going to drop down dead, but if it’s anything to go by from my stroke recovery, I’m lucky to still be walking and talking, so hopefully that gives me a bit of security that hopefully it won’t go further downhill even quicker,” she said.

“My family and husband are amazing support to me but they’re struggling too. It’s been a huge shock to everyone, but they’re saying the right things and keeping me going.”

You can donate to Megan’s fundraiser here.

Original artice: https://www.grimsbytelegraph.co.uk/all-about/scunthorpe

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