Woman denied surgery due to rare heart conditions

By Izzy Hawksworth via SWNS

A woman who has two rare heart conditions has been told by surgeons she cannot have the life-changing operation she needs - because the disorders are too unique.

Megan Hetherington, 27, has antiphospholipid syndrome (APS), a rare blood clotting syndrome, and tricuspid stenosis, which means a valve in her heart is narrowed.

She desperately needs surgery to replace her narrow tricuspid valve with an animal's one.

But doctors have refused to do it because of her condition and told her to 'live every day like it's her last'.

Undeterred, she sought out a second opinion and found a different doctor who is happy to take the risk.

However, the NHS waiting list for the operation is 12 to 18 months long - time she doesn't think she has - or she can pay $64,000 to have it done privately.

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.

"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 live people behind who need me."

Megan first went to the doctors as she was having fertility struggles and headaches so was referred for lab tests and a MRI scan.

But the scan actually revealed that she had a stroke without even realizing - and she still doesn't know when it happened.

In the following months after her diagnosis, she had another two strokes and a heart attack but she says she hadn't heard of APS before being told she had it.

Megan, who was forced to medically retire from her job in the NHS, 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.

"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."

After having the two strokes and the heart attack, doctors discovered Megan actually had a huge four by four-inch mass on her heart.

She underwent open heart surgery to remove the growth and nine months later but had to have another operation because a repair to her heart valve had failed.

Megan, of Isle of Axholme, Lincs,. was then diagnosed with severe tricuspid stenosis which means her valves are narrow and too scared.

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."

Megan decided to create a bucket list and as part of this, she married husband James Hetherington, 31, last year.

She also hopes to do 'things that people take for granted' such as going to the Trafford Centre in Manchester and visiting 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."

Megan has now set up a GoFundMe page, to raise the $64,000 she needs to have the private surgery.

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