A 27-year-old woman with two rare heart conditions has been told by surgeons that she cannot have the vital operation she needs due to the rarity of her disorders. Megan Hetherington is battling antiphospholipid syndrome (APS), a rare blood clotting disorder, alongside tricuspid stenosis, which causes the narrowing of a valve in her heart.
She urgently requires surgery to replace her narrowed valve with one from an animal. Despite this, Megan claims she’s been turned down by doctors who she says have advised her to “live every day like it’s her last” because of the complexities associated with her condition.
Refusing to give up, Megan sought a second opinion and found a surgeon willing to perform the procedure. However, she faces a daunting wait of up to 18 months on the NHS waiting list – a delay she fears she won’t survive – or the option to pay £50,000 for private treatment, reports the Express.
Megan said: “I was disheartened really because I was under the understanding that the more you need the operation, the higher up the list you are. I finally got somewhere who said they can do it and then I found out they can’t do it because of the waiting list.”
She added: “If I didn’t have it, it would severely impact my life expectancy. It is something that could then eventually kill me, it’s just when. I’m scared – I don’t want to go yet because I’m too young and I’ve got a lot of living left to do and I don’t want to leave people behind who need me.”
(Image: Megan Hetherington © SWNS)
Megan, who faced fertility issues and persistent headaches, was referred for tests and an MRI scan. The scan uncovered that she had suffered a stroke without knowing, leaving her uncertain of when it occurred.
In the months that followed, Megan experienced two additional strokes and a heart attack. Forced to retire medically from her NHS job, Megan said: “The lab results said I had a stroke so they confirmed I had APS because I had it.
“I had never heard of it before – they told me about it when they started investigating, but I hadn’t heard of it before then.” She has expressed her sorrow, feeling as though she was mourning a life she never expected to lead.
“I was sad and almost grieving because I knew this was going to change my life forever and I was grieving a life I didn’t think I would have. Although people with APS go on to live happy and healthy lives, I just knew this wasn’t going to be the case for me and it wasn’t,” she said.
Symptoms of Antiphospholipid Syndrome (APS):
The NHS website states that, in antiphospholipid syndrome, the immune system produces abnormal antibodies that make the blood “stickier” than normal. This means people with APS are more likely to develop blood clots in their veins and arteries, which can cause serious or life-threatening health problems.
Those with the condition may notice other symptoms such as:
After her strokes and heart attack, doctors found a large four by four inch mass on Megan’s heart. She underwent open heart surgery to remove the mass and required another operation nine months later due to a failed heart valve repair.
Now, Megan, from Isle of Axholme in Lincolnshire, is coping with severe tricuspid stenosis, a condition where her heart valves are narrowed and heavily scarred. She said: “It was a bit of a weird one, because I knew it was possible. But I had never heard of anyone with tricuspid stenosis in my life and even know, I’ve only found one other person in the world who has it.”
She has since made a bucket list, including getting hitched to her partner James Hetherington, 31, which took place last year. She is also keen on experiencing ‘things that people take for granted’, like a visit to the Trafford Centre and a local farm.
Megan said: “We’ve been ticking things off and we are getting quite far through it. I got married last September – that was gifted to us from a charity called Gift of a Wedding who gift terminally brides and grooms their wedding day. I did a zoo experience with a tapir because I’ve always loved them since I was a kid.
“I want to do things that are the simple pleasures in life like going to a farm that I used to go to as a child or going shopping at the Trafford Centre. People might take it for granted but for me, it’s the best day ever.”
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