A former cheerleader who lost both of her legs to a rare genetic condition which made her heart stop 78 times has detailed the agonizing moment that she woke up and realized her limbs were gone – and the depression she suffered in the months after the amputation.
Nicole Grehn, 27, of Milwaukee, Wisconsin, went into cardiac arrest and had both of her legs amputated before she was diagnosed with Catecholaminergic polymorphic ventricular tachycardia (CPVT), a rare condition characterized by an abnormal heart rhythm.
When she woke up from the procedure, Nicole admits she ‘cried and cried and cried’, explaining that she felt as though she was being ‘punished for anything I had ever done wrong’.
Life-changing: Nicole Grehn, 27, of Milwaukee, Wisconsin, went into cardiac arrest and had both of her legs amputated before she learned she suffered from a rare genetic condition
Younger years: Nicole was a cheerleader and a competitive swimmer before she had both of her legs amputated during emergency surgery
New outlook: Two years after she lost her legs, Nicole said she wouldn’t trade her ‘legs back for anything’
When she had her legs amputated in June 2015, the nursing student was on the brink of death after she collapsed out of the blue at a gas station and went into cardiac arrest.
She was suffering the symptoms of an inherited gene mutation which had gone undetected for 25 years – but doctors didn’t know that at the time.
The nursing student was rushed to hospital where baffled medics warned her parents she was likely to die as they desperately battled to save her.
‘I was just so lucky that I collapsed in a gas station that was right in front of a hospital in the middle of nowhere just as an ambulance was pulling in,’ she said.
Nicole’s heart stopped 78 times and she was shocked 78 times, but hospital staff was unable to correct or pinpoint the cause of the irregular rhythm.
Throwback: Nicole, who is pictured as a child, was diagnosed with Catecholaminergic polymorphic ventricular tachycardia (CPVT), which went undetected for most of her life
Hobby: Before she was diagnosed with CPVT, Nicole said she ‘absolutely loved’ being a cheerleader in high school and college
Doctors at Howard Young Medical Center in Minocqua, Wisconsin, gave Nicole antibiotics, fluid and inserted an impella heart pump before performing open heart surgery.
But she said they couldn’t find anything physically wrong with the vital organ to explain why it was only functioning at 10 per cent.
They cut open both her legs to release pressure due to swelling, but she went into septic shock, and they were forced to amputate to stop the deadly infection spreading.
‘From that point it was a medical miracle,’ Nicole said. ‘After they amputated they checked my heart function and it had gone from 10 per cent function to 40.’
Nicole’s sedation was withdrawn on day nine and, incredibly, she had suffered no brain damage, despite the lack of oxygen flow to her brain.
All smiles: Nicole said she was ‘completely healthy’ in her early twenties
Happy as can be: Nicole proudly struck a pose in a bikini over the summer, after she had her legs amputated
She recalled waking up from a coma to be given the devastating news that she was now an amputee, and she went on to suffer depression, anxiety and phantom limb pain.
Before her legs were amputated, the former cheerleader competed in national competitions in high school and coached her college team, which she ‘absolutely loved.’
Nicole, who recalled being ‘completely healthy’ in her early twenties, also swam competitively.
‘When I realized my legs were gone I cried and cried and cried,’ she said.
‘I instantly thought that everything I had worked so hard for over my life was over. It was like I was being punished for anything I had ever done wrong.
‘It felt like someone had cut a hole in the bed, my legs were dangling down and one person was trying to rip them off while someone else was throwing bricks on me.
Close call: In June 2015, the nursing student was on the brink of death after she collapsed out of the blue at a gas station and went into cardiac arrest
Emergency: Doctors cut open both her legs to release pressure due to swelling, but she went into septic shock, and they were forced to amputate to stop the deadly infection spreading
Bi change: Nicole suffered from depression, anxiety and phantom limb pain after she lost her legs, but that all changed when she started using prosthetic legs
‘I wouldn’t wish it on my worst enemy,’ she added. ‘I was also such a go, go, go person, so to then have people taking care of me and pushing me around…’
Three months later, she finally discovered that the entire ordeal had been caused by an ultra-rare genetic mutation called Catecholaminergic polymorphic ventricular tachycardia (CPVT), which had gone undetected for her entire life.
CPVT is a rare inherited heart rhythm disturbance which can cause fainting or sudden death if a sufferer goes into cardiac arrest.
But two years later, Nicole insists she’s happier than she ever and wouldn’t trade her legs back ‘for anything,’ as she proudly shares snapshots of herself in swimsuit while wearing her prosthetics.
Nicole has relearned how to walk, and she says she is actually over the moon that she is an amputee because it’s changed her life.
‘I hated being in a wheelchair and felt like a prisoner in my own body, so when I began my prosthetics journey it changed everything,’ she explained.
The trauma even prompted Nicole, who was studying nursing, to pursue a career as a physician assistant to support other victims of limb loss.
Inspired: The loss prompted Nicole to pursue a career as a physician assistant to support other victims of limb loss.
Giving back: Nicole now works with the Hangar Clinic. which provides prosthetic care, and as a mentor at Camp No Limits, supporting children with limb loss
Living life to the fullest: ‘I have really never been this happy in my entire life. I didn’t really value the things the way I do now,’ Nicole said
‘I decided I was going to work my butt off and I did. I was determined to go back to work and school,’ she said. ‘That’s when I realized, this is where I’m supposed to be. I’m supposed to be in the medical field helping other amputees.
‘I have really never been this happy in my entire life. I didn’t really value the things the way I do now,’ she added. ‘I wouldn’t trade my legs back for anything.’
Nicole now takes heart medication and has a defibrillator to control the condition, and plans to devote her life to helping other amputees.
She works with the Hangar Clinic. which provides prosthetic care, and as a mentor at Camp No Limits, supporting children with limb loss.
‘I’m going to be able to help other amputees for the rest of my life, which is incredible,’ she said.
Mary Leighton, founder of the No Limits Foundation, which organizes Camp No Limits events around the US, described Nicole as a ‘wonderful mentor.’
‘She had to relearn how to live life given her limb loss and heart condition but she did not let this hold her back,’ she said.